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Our latest Researcher of the Month, Dr Victoria Goodyear, is challenging policymakers and educators to move past simple smartphone bans in schools. In this thought-provoking interview, she shares the latest findings from her NIHR-funded SMART Schools Study, which reveals that restrictive phone policies alone do not improve adolescent mental health or reduce overall phone use. Dr Goodyear calls for a rights-based, education-led approach, empowering young people with the skills, agency and support they need to navigate digital spaces safely and meaningfully.
Bernie McInally narrates his blog written for Dementia Researcher. In this updated blog, Bernie McInally examines the heightened dementia risk among LGBTQ+ individuals, driven by factors like minority stress, social isolation, and health inequalities. Drawing on the latest ENRICH Scotland care home survey, he reveals the lack of structured LGBTQ+ support and calls for targeted action—through training, dedicated roles, inclusive research practices, and stronger community engagement. Bernie argues this isn't just a gap in research, it's a call for systemic change in care environments. Find the original text, and narration here on our website. https://www.dementiaresearcher.nihr.ac.uk/blog-lgbtq-and-higher-dementia-risk/ -- Bernie McInally is a Clinical Studies Officer at NHS Lothian and the Neuroprogressive and Dementia Network. Bernie's background is in Nursing, working in Mental Health and with Older People. He retired from full time NHS clinical work, and is now back working in Clinical Research supporting delivery of the Enabling Research in Care Homes (ENRICH) Scotland. He is passionate about research delivery, and opening access to people in all communities. -- Enjoy listening and reading our blogs? We're always on the look out for new contributors, drop us a line and share your own research and careers advice dementiaresearcher@ucl.ac.uk This podcast is brought to you in association with the NIHR, Alzheimer's Association, Alzheimer's Research UK, Alzheimer's Society and Race Against Dementia, who we thank for their ongoing support. -- Follow us on Social Media: https://www.instagram.com/dementia_researcher/ https://www.facebook.com/Dementia.Researcher/ https://twitter.com/demrescommunity https://www.linkedin.com/company/dementia-researcher https://bsky.app/profile/dementiaresearcher.bsky.social
While in Washington, DC for the IFSSH and IFSHT Triennial Congress, Stephanie and Cara had the pleasure of sitting down with Lisa Newington, a physiotherapist and hand therapist from London to discuss sustainability and the efforts that the UK is taking toward this. Lisa shares with us how their medical system is addressing sustainability and how we as hand therapists can do our part when treating our patients.Guest Bio: Lisa joined the Barts Bone and Joint Health team in September 2023. She is an ac-credited hand therapist (British Association of Hand Therapists) and has combined research and clinical practice throughout her career. Lisa continues to work clinically at Barts Health NHS Trust, having previously worked as an advanced practice hand therapist at Guy's and St Thomas' NHS Trust. She is involved in national and international hand therapy research and mentors re-search active allied health professionals through NIHR and Chartered Society of Physiotherapy mentorship schemes. Lisa was recently appointed to the Scientific Committee of the European Federation for Societies of Hand Therapy (EFSHT) and has previously chaired the British Association of Hand Therapists Clinical Evidence Committee. Lisa is a Deputy Director for the London Centre for Work and Health and an Editorial Board Member for the journal Hand Therapy. Lisa completed her PhD at the MRC Life course Epidemiology Unit at the University of Southampton through an NIHR Doctoral Research Fellowship (2016-2019) and held a Postdoctoral Research Fellowship with Imperial Biomedical Research Centre and Imperial Health Charity (2020-2023).
Richard Westcott talks to Jonathan Stieglitz, IAST and Martin White, University of Cambridge, about the global health challenges related to diet and nutrition, the roles of public health policies, cultural practices, and lifestyle changes, while creating sustainable food systems that ensure access to healthy food for all and maintain economic viability.How do we address global health challenges, particularly in relation to diet and nutrition? What role do public health policies, cultural practices and lifestyle changes play in shaping our food choices? How can we create food systems that ensure everyone has access to healthy and sustainable food while maintaining economic viability?To explore these issues, Richard Westcott talks to Prof Martin White, Professor of population health research from the University of Cambridge, and Prof Jonathan Stieglitz, IAST Scientific Director.Season 4 Episode 7 transcriptListen to this episode on your preferred podcast platformFor more information about the Crossing Channels podcast series and the work of the Bennett Institute and IAST visit our websites at https://www.bennettinstitute.cam.ac.uk/ and https://www.iast.fr/.Follow us on Linkedin, Bluesky and X. With thanks to:Audio production by Steve HankeyAssociate production by Burcu Sevde SelviVisuals by Tiffany Naylor and Aurore CarbonnelMore information about our host and guests:Richard Westcott is an award-winning journalist who spent 27 years at the BBC as a correspondent/producer/presenter covering global stories for the flagship Six and Ten o'clock TV news as well as the Today programme. His last role was as a science correspondent covering the covid outbreak, but prior to that he was the transport correspondent reporting on new technologies such as driverless cars, major accidents and large infrastructure projects. Last year, Richard left the corporation and he is now the communications director for Cambridge University Health Partners and the Cambridge Biomedical Campus, both organisations that are working to support life sciences and healthcare across the city. @BBCwestcottProf Jonathan Stieglitz is an anthropologist specializing in human health and aging. He studies how evolved human biology interacts with variability in the environment to influence well-being over the life course. Since 2004 he has worked with indigenous Tsimane forager-farmers of the Bolivian Amazon, studying how environmental transition (for example, changes in infectious exposures, physical activity levels, or consumption of processed foods) influences diverse health indicators. He co-directs the Tsimane Health and Life History Project. Prof Martin White is an interdisciplinary scientist who leads research on food systems and public health, and has a particular interest in evaluation of population interventions to improve diet and health. He led the NIHR funded evaluation of the Soft Drinks Industry Levy and currently leads two UKRI interdisciplinary consortia on food system transformation (https://www.mandala-consortium.org/ and https://www.salientfoodtrials.uk). He was a visiting fellow at the Bennett Institute for Public Policy in 2020-22 and is a regular contributor to Cambridge University's Centre for Science and Policy (CSaP) Policy Fellows programme for civil servants.
Dr Sam Moxon, narrates his blog written for Dementia Researcher. Sam examines the impact of the UK's shifting financial priorities on dementia research funding. While government-backed funds like Innovate UK, MRC, EPSRC, and UKRI face potential budget tightening, charities such as Alzheimer's Research UK, Alzheimer's Society & Race Against Dementia continue to play a crucial role. The blog highlights uncertainties ahead, suggesting increased competition for available grants, but reassures that the overall support for dementia research remains strong despite financial pressures. Find the original text, and narration here on our website. https://www.dementiaresearcher.nihr.ac.uk/blog-will-dementia-research-funding-weather-the-financial-storm/ #Grantfunding #Research #ResearchFunding -- Dr Sam Moxon is a biomaterials Research Fellow at University of Birmingham. His expertise falls on the interface between biology and engineering. His PhD focussed on regenerative medicine and he now works on trying to develop 3D bioprinting techniques with human stem cells, so that we better understand and treat degenerative diseases. Outside of the lab he hikes through the Lake District and is an expert on all things Disney. -- Enjoy listening and reading our blogs? We're always on the look out for new contributors, drop us a line and share your own research and careers advice dementiaresearcher@ucl.ac.uk This podcast is brought to you in association with the NIHR, Alzheimer's Association, Alzheimer's Research UK, Alzheimer's Society and Race Against Dementia, who we thank for their ongoing support. -- Follow us on Social Media: https://www.instagram.com/dementia_researcher/ https://www.facebook.com/Dementia.Researcher/ https://twitter.com/demrescommunity https://www.linkedin.com/company/dementia-researcher https://bsky.app/profile/dementiaresearcher.bsky.social
Dr Sam Moxon, narrates his blog written for Dementia Researcher. Struggling to turn your thesis into a publication? Dr Sam Moxon breaks down the process in this insightful blog, guiding you through structuring your paper, identifying the core message, simplifying complex content, and navigating peer review. Whether you're overwhelmed by the differences between a thesis and a journal article or unsure where to start, this guide provides practical tips to streamline the journey. Plus, don't forget the final step—celebrating your achievement! Find the original text, and narration here on our website. https://www.dementiaresearcher.nihr.ac.uk/blog-how-to-turn-your-thesis-into-publications/ #PhDLife #AcademicPublishing #ThesisToPaper #ScienceWriting #ResearchTips -- Dr Sam Moxon is a biomaterials Research Fellow at University of Birmingham. His expertise falls on the interface between biology and engineering. His PhD focussed on regenerative medicine and he now works on trying to develop 3D bioprinting techniques with human stem cells, so that we better understand and treat degenerative diseases. Outside of the lab he hikes through the Lake District and is an expert on all things Disney. -- Enjoy listening and reading our blogs? We're always on the look out for new contributors, drop us a line and share your own research and careers advice dementiaresearcher@ucl.ac.uk This podcast is brought to you in association with the NIHR, Alzheimer's Association, Alzheimer's Research UK, Alzheimer's Society and Race Against Dementia, who we thank for their ongoing support. -- Follow us on Social Media: https://www.instagram.com/dementia_researcher/ https://www.facebook.com/Dementia.Researcher/ https://twitter.com/demrescommunity https://www.linkedin.com/company/dementia-researcher https://bsky.app/profile/dementiaresearcher.bsky.social
RESTORING AND MAINTAINING EYESIGHT. Professor Sheng Lim is an internationally renowned ophthalmologist and consultant at St Thomas' Hospital in London. He was trained in the UK and also spent one year as the International Glaucoma Association's postdoctoral fellow at the Mayo Clinic, Minnesota. He was promoted to Professor of Ophthalmology (Glaucoma Studies) at King's College London in 2020, in recognition of his contribution towards ophthalmology research. He is currently the head of ophthalmology research at St Thomas', and founder of their KCL Frost Eye Research Department, one of the largest ophthalmology clinical trial units in the UK. “My ultimate goal, as a professor in glaucoma research, is to find a cure for glaucoma and prevent blindness.” “Vision is probably one of the most intimate and important sensory organs that a human being has.” “In the UK and Europe we have more choices, better suited for the patients, than they have in America.”
In this episode of the St Emlyn's podcast, hosts Iain Beardsell and Liz Crowe welcome back Caroline Leech, a emergency medicine consultant with extensive pre-hospital care experience. Caroline discusses the concept of moral injury, delving into its distinction from moral distress. She introduces three mechanisms of moral injury: acts of commission, acts of omission, and betrayal. Caroline provides insightful examples from emergency medicine to illustrate these concepts, emphasizing the importance of identifying and addressing moral injury to support healthcare professionals. The discussion highlights the emotional and cognitive distress faced by emergency responders and the necessity for professional psychological support when moral distress accumulates into moral injury. 00:00 Introduction and Welcome 00:23 Introducing Caroline Leech 01:10 Defining Moral Injury and Distress 03:42 Acts of Commission 07:12 Acts of Omission 12:30 Betrayal in Healthcare 15:00 Conclusion and Final Thoughts The Guest - Caroline Leech Caroline Leech is Deputy Clinical Lead of The Air Ambulance Service and has 25 years of prehospital clinical experience. She is a Consultant in Emergency Medicine at University Hospital Coventry, the West Midlands Trauma Network Director, and the Trauma Lead for the Institute for Applied & Translational Technologies in Surgery (IATTS). Caroline is currently undertaking a NIHR funded Clinical Research Scholarship with Warwick University. Her research interests include maternal out-of-hospital cardiac arrest, calcium in traumatic haemorrhage, and frailty in major trauma. She is committed to improving equality and diversity in PHEM, and promoting strategies for supporting the wellbeing and psychosocial care of prehospital responders.
Join Professor Peter Nash from the Griffith University in Brisbane, and Professor Denis McGonagle, Professor of investigative rheumatology at the NIHR funded Academic Unit for the Musculoskeletal Diseases and Leeds Teaching Hospitals NHS Trust in the UK, as they discuss his recent review ‘Subclinical psoriatic arthritis and disease interception—where are we in 2024?'
Music from #Uppbeat (free for Creators!): https://uppbeat.io/t/aylex/wanderer License code: YMAZEDLW8RPOEKPH I am a NIHR SRL for community nurses. My objectives for the three-year programme are: to embed a research active culture within community nursing teams; increase the priority of community nurse-led research setting an agenda with people using the services and collaborating with academic partners, regional Trusts and local authorities; establish a supported pathway between existing improvement programmes (QI, service evaluation, clinical audit) and research. Within my Trust I have rolled out the Self-assessment of organisational readiness toolkit, created a staff research interest registry to better understand and serve the workforce, and am soon to launch our nursing journal club. Regionally, I work collaboratively with two other Trusts providing community care to deliver a Research Champions Programme and to develop the programme into a wider pathway. Nationally, I am part of the leadership group for the Queen's Nursing Institute Nursing Research Forum delivering and designing content and I sit on the Working Group for the Community Healthcare Alliance for Research Active Trusts (CHART) to unite community health and care providers, healthcare professionals and public bodies to advance patient-centred research in community settings. Additionally, as a community clinical research nurse I deliver NIHR Portfolio research to gather high-quality and credible data to contribute to improving outcomes for people using community services. Nursing is a safety critical profession and nurse-led research must be at the core, be transparent and be accessible. Donna Clements | LinkedIn @researchnursed.bsky.social Here are the links to my publications: A Novel Randomized Trial Protocol for Evaluating Wound Healing Interventions | Advances in Wound Care The impact of a new intervention for venous leg ulcers: A within‐patient controlled trial - Bull - 2023 - International Wound Journal - Wiley Online Library Here is the link to the Queen's Nursing Institute Nursing Research Forum and my research advice drop-in sessions, blog and masterclass: A Novel Randomized Trial Protocol for Evaluating Wound Healing Interventions | Advances in Wound Care Nursing research advice drop-in sessions – The Queen's Nursing Institute How Can Nurses Get Involved in Local Research Initiatives? – The Queen's Nursing Institute Masterclass: Routes into Research for Community Nurses – The Queen's Nursing Institute And, of course, the link for the NIHR SRL for nurses and midwives (cohort 1 link): New NIHR Senior Research Leader Programme for nurses and midwives | NIHR
Guest: Matthew Winn, Chief Executive, Cambridgeshire Community Services NHS Trust and Norfolk Community Health & Care NHS Trust. Matthew Winn has been the NHS England national director for Community Health leading on virtual wards, NHS Long Term Plan for older people and integration with social care. He continues to advise NHSE England and the Government on intermediate care and rehabilitation. On behalf of partners, he is the senior responsible officer across Bedfordshire and Luton for community health and integrated discharge and chairs the children and young people partnership in Cambridgeshire and Peterborough and is a core member of the Board developing the children's physical and mental health services across Norfolk. Previously he has chaired the regional research collaborative board (NIHR), founded and was the first chair of the Community Network (NHS Providers and NHS Confederation) and has been a member of the NHS Employers policy Board, Outside of work he can be found pounding his way around a real tennis court and providing support to Cambridge United Community Trust as a trustee. Join us as we discuss employee engagement in the NHS. Host: Jo Dodds
Guest: Matthew Winn, Chief Executive, Cambridgeshire Community Services NHS Trust and Norfolk Community Health & Care NHS Trust. Matthew Winn has been the NHS England national director for Community Health leading on virtual wards, NHS Long Term Plan for older people and integration with social care. He continues to advise NHSE England and the Government on intermediate care and rehabilitation. On behalf of partners, he is the senior responsible officer across Bedfordshire and Luton for community health and integrated discharge and chairs the children and young people partnership in Cambridgeshire and Peterborough and is a core member of the Board developing the children's physical and mental health services across Norfolk. Previously he has chaired the regional research collaborative board (NIHR), founded and was the first chair of the Community Network (NHS Providers and NHS Confederation) and has been a member of the NHS Employers policy Board, Outside of work he can be found pounding his way around a real tennis court and providing support to Cambridge United Community Trust as a trustee. Join us as we discuss employee engagement in the NHS. Listen Live (Archive Available) Host: Jo Dodds
Dr Hamilton Morrin is a psychiatrist at South London and Maudsley NHS Foundation Trust and an NIHR academic clinical fellow at King's College London researching neuropsychiatric disorders using neurotechnology. He is a Trustee for Gaming the Mind, a charity that promotes positive mental health within the gaming community and the games industry by raising awareness of mental health challenges and reducing the stigma surrounding these issues.Find out more here:gamingthemind.orgBlueSky/X: @gamingthemind @HamiltonMorrinInterviewed by Dr. Alex Curmi, consultant psychiatrist and a UKCP registered psychotherapist in-training.If you would like to invite Alex to speak at your organisation please email thinkingmindpodcast@gmail.com with "Speaking Enquiry" in the subject line. If you would like to enquire about an online psychotherapy appointment with Dr. Alex, you can email - alexcurmitherapy@gmail.com.Give feedback here - thinkingmindpodcast@gmail.com - Follow us here: Twitter @thinkingmindpod Instagram @thinkingmindpodcast
Dr Sam Moxon, narrates his blog written for Dementia Researcher. In this blog Sam examines the hidden challenges faced by people living with dementia during the cold, isolating months of winter. Drawing from personal experiences and expert insights, the blog explores the increased risks, from slips and falls to disrupted sleep and social isolation. But more importantly, it emphasises the power of compassion, connection, and understanding to ease the burden on those affected. A must-read or listen for anyone seeking to support loved ones navigating the unique difficulties of dementia in wintertime. Find the original text, and narration here on our website. https://www.dementiaresearcher.nihr.ac.uk/blog-dementia-winter-care/ #winter #dementia -- Dr Sam Moxon is a biomaterials Research Fellow at University of Birmingham. His expertise falls on the interface between biology and engineering. His PhD focussed on regenerative medicine and he now works on trying to develop 3D bioprinting techniques with human stem cells, so that we better understand and treat degenerative diseases. Outside of the lab he hikes through the Lake District and is an expert on all things Disney. -- Enjoy listening and reading our blogs? We're always on the look out for new contributors, drop us a line and share your own research and careers advice dementiaresearcher@ucl.ac.uk This podcast is brought to you in association with the NIHR, Alzheimer's Association, Alzheimer's Research UK, Alzheimer's Society and Race Against Dementia, who we thank for their ongoing support. -- Follow us on Social Media: https://www.instagram.com/dementia_researcher/ https://www.facebook.com/Dementia.Researcher/ https://twitter.com/demrescommunity https://www.linkedin.com/company/dementia-researcher https://bsky.app/profile/dementiaresearcher.bsky.social
In this episode, we explore the importance of patient involvement in shaping rare condition research initiatives. Our guests discuss why it's crucial to involve individuals with lived experiences, including patients and caregivers, in setting research agendas. In doing so, this approach ensures research can be more inclusive, efficient, and impactful, addressing the issues that matter most to those affected. Mel Dixon, Founder Cure DHDDS and member of Genomics England Participant Panel is joined by Jo Balfour, Founder of CamRARE and Dr Rona Smith, Senior Research Associate at the University of Cambridge and Honorary Consultant in Nephrology and Vasculitis. Find out more about the Cambridge Rare Disease Research Network, discussed in the episode, which aims to support the rare condition community in building an online network of partnerships and resources to facilitate new patient-centred research opportunities. "We're really turning research on its head, moving away from it being a researcher-led activity where they decide on the idea and the research concept and bring patients in at different points along that research journey and instead starting with the patient's idea in the first place. It can only be a better system for all because it improves efficiency, it improves potentially the long term outputs and, most importantly, outcomes for patients." You can download the transcript or read it below. Mel: Welcome to Behind the Genes. Rona: I think it really means that we measure what matters to patients and individuals that are affected. Often, it's really difficult to capture kind of the real impact of disease and there's a tendency for researchers to measure things that are easy to measure and are reproducible, which of course is important but what's most important is actually being able to truly capture the impact of an intervention on an individual's condition. So, I think that's another key aspect of having people with lived experience involved right from the start. Mel: My name is Mel Dixon and I'm a member of the Participant Panel at Genomics England and founder of Cure DHDDS, a charity set up to raise awareness, support families and help drive research into the ultra-rare DHDDS gene variant. On today's episode I'm joined by Jo Balfour, Managing Director of CamRARE, which is the Cambridge Rare Disease Network. This network unites patients, advocates, experts and leaders to address the challenges faced by people affected by rare conditions. I'm also joined by Rona Smith, Associate Professor at the University of Cambridge and honorary consultant in nephrology and vasculitis. Today we'll be discussing the role of patients in setting research agendas and how their involvement can lead to more impactful and patient-centred research. If you enjoy today's episode we'd love your support. Please like, share and rate us on wherever you listen to your podcasts. Before we begin the interview I'd like to share a little bit of my story. In November 2022, following whole genome sequencing, we received the news that two of our three children carried a neurodevelopmental and neurodegenerative DHDDS genetic variant. At the time of our children's diagnosis there was very little information on our gene, minimal research happening into it and no treatment pathway. Through our charity, Cure DHDDS, we have worked tirelessly to instigate research and create a collaborative scientific research community. I am a huge advocate for patient-led research and have witnessed first-hand the positive impact it can have on patient lives. Thanks to the work of the many scientists that we have had the honour of collaborating with, within two years of our children's diagnosis we have a disease-modifying therapy in our sight and an ASO (Antisense oligonucleotides) therapy in development. We are incredibly grateful for the opportunities genetic testing has given us but I also appreciate how overwhelming a genetic diagnosis can be and how challenging it can be for families to initiate research projects with little to no resources, and that's why initiatives such as CamRARE that we'll be discussing today are so important. On that note, let's get back to our podcast guests. I wonder before we dive into today's topic if you could both give a brief introduction, and, Rona, if you could also give the less scientifically-minded of us an explanation about what nephrology is. Rona: Thank you for inviting me today. So I'm Rona Smith, I work in Cambridge and I'm a nephrologist and that means somebody that looks after individuals who have diseases that affect their kidneys. My specialist interest is in something called vasculitis which is a rare autoimmune disease that affects all organs in the body but kidneys as well. Mel: Thank you. And Jo? Jo: Hi Mel. I'm Jo Balfour, the Managing Director and one of the founding members of Cambridge Rare Disease Network, or CamRARE for short. I think we're often described as the ‘Chief Everything Officers'. I manage the charity and all of our operations and our wonderful team. Mel: Lovely. Thank you very much. Rona, I wonder also if you could explain to our listeners what is a research agenda? Rona: So in brief a research agenda is really a strategy that outlines key questions or topics that a research community, and that might be investigators, clinicians, scientists, patients, industry, and they are the priorities that they want to explore and address over a period of time. So it's really a direction of travel and identification of areas of importance and where there are gaps in knowledge so that it then leads to the opportunity to form specific research questions that you can then go on and address. Mel: Why do you both think it's important to involve patients in setting these research agendas? Jo: Well I think critically one of the things that I've learnt over my time working, not just in the rare disease sector but also earlier in social care and education, is that we should as professionals never assume anything; you know, we have not lived in their shoes and we don't know what the daily life of people living with rare conditions is like. So gathering that day to day lived experience is really crucial. And I have a unique opportunity to see into that daily life with our local community of rare disease families who have a range of different rare conditions. I'm party to their conversations, to their daily trials and tribulations, the things that are difficult, the things that they find joy in but I still will always go back to them and ask their opinion. I see myself as a spokesperson for them as we're an umbrella organisation but I certainly never really know what it's like to live with their conditions. I think they bring with them diverse experiences which we really need and value in setting research priorities, they have unique knowledge of their own conditions. They ethically have a right to be involved from the start and to set that priority and agenda but, equally, it's valuable for us as researchers because if we can involve people early we have definitely more chance of good engagement and later success, better outcomes for everyone. Mel: Couldn't agree more. And, Rona, is there anything you'd like to add to that? Rona: I think it really means that we measure what matters to patients and individuals that are affected. Often it's really difficult to capture kind of the real impact of disease and there's a tendency for researchers to measure things that are easy to measure and are reproducible, which of course is important but what's most important is actually being able to truly capture the impact of an intervention on an individual's condition. So I think that's another key aspect of having people with lived experience involved right from the start. Jo: Another thing that's actually quite interesting that I'm going to mention here is that I think when you live day in, day out with a condition your perception of things like pain is different from your average person's so you become almost accepting of your daily norm, and I think that's really critical to understand as well. And it's only by getting to really know patients and understand. When we say, “What's your pain like on a scale of 1 to 10?” you know, something that I feel as pain because I get it rarely I probably am going to put it at a higher score than somebody who has that every day. So I think there's subtleties and nuances like that as well which are really critical to get across by conversation with patients. Mel: That makes absolute sense. And I see that from the patient perspective myself. I was out with my friends the other day and they said, “Oh my goodness, you're constantly taking your children to sports activities.” Because of their physical needs we're constantly, they go to Pilates, they go to swimming, they go to gym class – we try to keep them fit and healthy – and we, even though they're older, have to take them there and back and that's become our norm but when you're speaking to families whose children don't have those difficulties they have no idea how much time that actually takes up. And I had no idea how much like time it takes up compared to what other people are doing because that is our norm, that's what we've accepted as the norm. Patients and patient groups are incredibly driven and invested in their rare disease as well so they make really good rare disease research partners. And, moving on, what do you see as the challenges and barriers to patient involvement and how do we overcome these? Rona: I think probably the biggest barrier is time. So, the most important thing is investing time to build relationships, to really understand in-depth perspectives both from the patient's side but also the researcher's side. And, inevitably, we always want to do things faster and actually this is one really, really critical aspect is investing time. Funding is also a challenge. Often you have to do a lot of upstream work before you have got funding for a project and that takes time from individuals and that's another challenge. And I think the third thing for me is individuals that are patient partners in research, they're not just patients, they're people - they have lives, they have work, they have families, they have everything else that goes on in life - and so actually fitting this all in is really challenging. Mel: Jo, is there anything you'd like to add there? Jo: Yeah, I think just a word about diversity really and, you know, how do we uncover those hidden families and patients who currently don't really have a voice. I think we'd all acknowledge that there are key voices within the rare disease community who will share the views of their community and they've become well-oiled machines almost at being great advocates but, as I mentioned earlier, even though I'm perhaps one of those people, you know, I speak for a community, I would never assume anything. So, I still need to uncover the thoughts and the feelings and the emotions and the needs and the what matters from those people, and, as Rona mentioned, that takes time and it takes building relationships and trust with people. So, we have a wonderful community in the Eastern region of England which is made up of families affected by all different rare diseases, and undiagnosed. And some are babies and have been lucky enough to get a very early diagnosis and others are young adults but what we're finding through that is that experience is diverse and experience changes over time as families go through transition periods or they meet a roadblock and they're having to navigate things differently. So, it's about building those relationships. That takes times, it takes resources, it takes sometimes a reset in the way that we think things need to be done. So instead of asking questions all the time and putting surveys out and trying to get response that way it takes a bit of thinking about how do we listen better and how do we give those people who don't have a voice, who are non-verbal or perhaps have a learning disability, how do we ensure that we're capturing their views as well. And we did a really lovely project actually last year, it was something funded by the NHS called My Story, My Way, where we actually spent three months with our young adults working out what it was they wanted from our community next, how did they want us to follow them into adulthood. And we knew that there were a number of young people in that group who were non-verbal and had some learning differences and we knew that we couldn't just do it in the normal format, we couldn't just do a focus group and ask their opinion, so we actually did it through photography. So each of the familiess well, the young person themself was given a simple camera. They basically had thirty-six shots. You got thirty-six clicks to capture the things, the people, the places that you love and then to share them with us as a community. And then we all discuss, you know, how these things might be something we can build into our future plans for them. And it was such a wonderful activity. We gave them plenty of time, plenty of opportunities to ask questions. If the young person themself couldn't physically click the camera their sibling got to help them. And their sibling or their parent was given another camera in black and white so we had distinctive pictures, pictures that the kid themself had taken, pictures that the family had taken, but all together, you know, it gave this lovely kind of medley, this beautiful visual representations of what mattered to them. And I think it's about taking the time to be creative with people like that and really get to the bottom of “How do we find out what matters to you?” Mel: Although it takes time to think about those ideas. That could be translatable across the board really, couldn't it, throughout various conditions. I think that's fantastic. Rona, I wonder if you can tell us how has the work that's already been done through the patient-led research hub facilitated addressing research priorities. Rona: So just a tiny bit about the patient-led research hub. So, this has been now running for nearly ten years through Cambridge. It's a partnership between the Cambridge Biomedical Research Campus and we're based within the university and the Trust. And in essence it kind of was set up because of really a mismatch between what many patients wanted from research and what investigators' views were. And so really the premise is that we welcome patients to come to us with an idea, a problem, an unmet need in their disease area – and we do focus on rare disease – and we work with them to see “Well actually what do we already know about that?” and then if there is a gap in knowledge we then move to kind of trying to work and develop a question that we can then address. And that might be a question that's addressed through generating more information through surveys or it may actually be a question of an intervention that we can test. So, we've had lots of projects come through and we, just an example of a project was from a group of patients with a rare kidney condition called autosomal dominant polycystic kidney disease, and that is a condition where over time you accumulate cysts in your kidneys and the kidneys become large, they become very painful and eventually they can fail. And a question that the patient group had was about whether drinking more water could impact the rate of growth of these cysts, and there's a strong hypothesis behind that that drinking lots of water reduces down the level of a particular hormone. And we actually worked with the charity behind this group, the Polycystic Kidney Disease Charity, and designed a study to test a very high water intake to a normal water intake to see whether it was possible over a period of eight weeks for patients to actually stick to this. It's quite difficult to do. And they recorded how much water they'd drunk, they tested their own urine and actually it showed that this was feasible to do this kind of work. So, I think the patient-led research hub is kind of taking the research priorities that are important to patients but working in a patient-led way to come right through to a project. Mel: That sounds great. And if the patients are engaged from the start of the project and it's led by them they're obviously going to be much more driven to take part in the actual research and see the research through themselves. So, Jo, I'm very excited to hear about the launch of the Rare Disease Research Network. Can you please tell me what the research network is and what you hope to achieve with it? Jo: So the Rare Disease Research Network is first of all a bit of a mouthful so we're going to try and encourage people to call it the RDRN. It's a co-created project which really the patient-led research hub in Cambridge approached us about in 2022, I think, we started talking about this, approached CamRARE as a partner to apply for an NIHR partnership grant, and we were successful with that to really take the model that the patient-led research hub had already developed and found was successful, and perhaps too successful for its own good – they were receiving more applications and more ideas than they could manage – and to develop that into an online platform. So taking the same model, making it more accessible to a wider group of people, potentially worldwide, and providing the hand-holding that the patient-led research hub has always done, helping patients really consider their question, formulate that into a research idea, then do the literature search to find out “Is this question already answered, and if it is, great, can we provide that information to our community? If it's not, how do we then build a team? Who needs to be in my research team? How do we then get funding together to take this idea forward?” So, it's really taking the model, taking the good practice that already existed and creating an online platform to really attempt to replicate that as best we can. So the platform will launch on 23rd November (2024) at CamRARE's Rarefest which is a lovely in-person activity that's going on in Cambridge, and that platform will be open to anyone who has an interest in rare disease research. But I think, critically, what's different about this is that, you know, we've talked about setting research agendas and we've talked about patients contributing to that, contributing to setting the priorities, what's different here is that the patients decide on the questions; it's what matters to the patients coming from them and their community. And it's an opportunity for them to showcase those questions and those idea on a platform and almost to have a call to action, “Is there anyone else on this platform who has similar research interests to me?” The platform will matchmake them together through a series of choosing tags, choosing tags about particular disease areas - It's linked to the Orphanet database - choosing tags about the type of research that you're interested in. That matchmaking process will happen, which at the moment is a very serendipitous process but we hope to take it a little bit further on from that. It's still going to be a little bit of potluck who's on the platform at the time who's got similar interests as you but hopefully it will improve that serendipitous system. And it will allow them to access resources on the platform, which is the kind of hand-holding bit, and also, critically, some mentoring. So, there's a real sort of opportunity here for professionals – researchers, industry partners, healthcare professionals – who have particular skills in research to be able to say, “Well I can help. I might not be able to be part of your team at this point but if you need half an hour on a Zoom call with me to think about your research question I can offer to mentor you on that.” But, likewise, I think there's going to be lovely opportunities here for patient groups to support each other too because what we've always realised is that patient groups are at different points of their research journey. You know, we see some organisations that are really well-funded now who are in partnership with industry, you know, they have a group of pharma companies that are supporting the development of treatments and they've kind of reached that point where they're very highly skilled and very well experienced. And then there's others who are mum and dad who've just had a recent diagnosis for their child, they've gone searching on the internet, they can't find information, they don't have a patient organisation to rely on so they're going to make one themselves. This happens all the time in the rare disease field. There are 11,000 different rare conditions and there's not a group for all of them so mum and dad will often start something themselves and then in lots of cases want to do some research, they want to answer some of these questions. So, you know, they're really starting from a very different beginning stage here where they've going to need some help, and sometimes the best help comes from their peers, it comes from other patient groups. So that's in a nutshell what it's about; it's about providing opportunity for patient groups to showcase their great ideas, build partnerships and take research forward. Rona: The only thing just to add there is I think, although rare diseases are individually rare, collectively, as Jo said, they're quite common, there's 11,000 rare diseases, and often, although they all have distinct features, there are common threads through rare diseases in terms of maybe symptoms that patients experience or challenges that their rare disease brings. So, for example, you may have symptoms of pain or seizures that are common across many conditions, there may be educational needs that are threads going through. And groups could work together maybe to answer a question that's relevant to a number of conditions and so bringing people together for that. Or there may be another group that's already tried to answer that question in their condition and you can learn what worked, what didn't work. I think that's the other thing, is there will be common threads that come through, and I think that would be a real strength of the network to draw those people together. Jo: I think as well, Mel, if we take this back to what we said right at the outset about optimising success for patients by bringing them into the conversation early, I think this platform provides the perfect opportunity to do that. So we're moving away from, we're really turning research on its head, moving away from it being a researcher-led activity where they decide on the idea and the research concept and bring patients in at different points along that research journey and instead starting with the patient's idea in the first place. It can only be a better system for all because it improves efficiency, it improves potentially the long-term outputs and, most importantly, outcomes for patients. Mel: We were that family, that mum and dad setting up the charity a year and a half ago for the ultra-rare disease that our children had. I think, you know, the match-making opportunities that are here are fantastic because finding yourself in that position is incredibly isolating. And not only the matchmaking opportunities with the researchers but, as you were saying, Rona, as well with similar diseases; there's so much to learn from other diseases that may have, I don't know, a similar phenotype in the cells or similar symptoms. That's what we found from connecting with these other rare conditions. So, for us it's lysosomal storage diseases, we've now got the opportunity potentially to piggyback on drugs better used for their diseases for our own ultra rare condition, you know, where for us to run a full-on clinical trial by ourselves with a new drug, I mean, we just wouldn't have, there's no funding, there's not enough interest. So, I think the opportunities that lie in this network are really, really exciting. Jo, can you tell me a bit more about who can join the research network? Jo: So anyone with a rare disease research interest. That's everybody from individuals affected themselves, their family members, their caregivers, the patient organisations, that support them, and then, you know, all sorts of rare disease professional researchers. So, we're looking for PhD students who are looking for their first exciting project to undertake, have they taken a look at the Rare Disease Research Network to see if there's any ideas that might pique their interest. We're looking for established researchers, medical professionals who are undertaking clinical research but also I think, importantly, companies. You know, we hear more and more about concepts like drug repurposing for rare diseases where we're looking at the opportunities for taking drugs that already exist and have been proven safe to be redeployed to other rare diseases. It's quicker, it's more efficient, it's cheaper, so does it open up opportunities for companies that are using that technique to get involved. And also pharma companies. This platform is not all going to be about finding cures and treatments but it certainly will be a priority for some groups. So we really are welcoming everyone with an interest in rare disease research to get involved, be part of the network, collaborate, help where you can. Rona: And also, as we've said before, once you've got that level of engagement and the patients leading these initiatives we've found, certainly with our group, the patients are much more willing to, say, find the MRI scans for the scientists, to have a blood sample done, to have skin fibroblasts taken. If they know and they understand and they're driven and, as you said, the research idea has come from them as a patient group it certainly increases the chance of them being fully involved in the project from the start to the finish. And all these things are imperative to understanding rare conditions because without researchers having the opportunity to look at these various samples you're not going to stand much of a chance of finding a treatment. Jo: And we want the opportunity to upskill patients as well. I think there are many people out there with great ideas who haven't yet found the confidence to promote those ideas because they're not quite sure of what the research journey looks like or what it might entail or whether they've got the right skills. But I think by joining the platform and almost kind of watching how other people are managing these things and utilising the resources and the mentoring I do really hope that will build that confidence and those skills sets in people so that they can engage. Rona: Yeah, just to add to that, I don't think it's just upskilling patients and patient groups, I think it's upskilling everybody involved in rare disease research. This is quite a different way of approaching research, it's something that maybe academics may feel a little bit uncomfortable with, it's not how it's normally done, so I think there's a whole learning process. And the aim is that this RDR network will evolve and will develop and the direction it goes will be driven by the community that are engaging with it. So I think it's a really exciting time just as we're coming up to launch to see where this goes. Jo: Mel, you've been involved in this project, it would be really interesting actually to hear from you. I was just thinking, as part of the co-creation community we had 25 individuals from the rare disease community who built this platform from scratch with us; Rona and I might have set out all the vision for how we wanted the platform to be or what we thought might be a good idea but ultimately it was the community who decided and they literally have fact-checked and cross-referenced every word that's gone on the platform. What has that experience been like for you as a patient representative? Mel: I think it's been really welcome to see a network that is truly putting patients at the centre of everything. So, from the very beginning foundations you have the rare disease community involved which is exactly what you're trying to create through your network. So, I think it's been very welcome to be involved in the project and I also think that hopefully it will sort of be self-perpetuating that this will start to press a reset button on how we think about rare conditions and how it needs to be a more equitable field with patients. Because I think, as you've both alluded to, while some clinicians and researchers are very onboard with this, for others it's a new concept that they still need to potentially adjust to or get their head round because it is a different way of thinking. But in rare disease, well, in any condition really but particularly rare disease because there's so few experiences to draw on, I think that patients are vital to moving forward and to making that change so that diseases and conditions that have previously had no treatment, like, hopefully this way of thinking can expedite those treatments because, well, as a rare disease representative myself for our community that's one of our biggest drivers. We're dealing with a condition that's progressive that affects most of our community's children; that is what we want, we want treatment, we want something that can stabilise the conditions. You know, you can have researchers doing random projects that would make no difference to the final outcome of patients but if researchers know it's a priority of this particular group, hopefully that can channel in their focus and get the outcomes that the patients want in a more timely collaborative way. So, I am a huge advocate for what you're doing, I think it's an incredible initiative. Is there anything either of you would like to add to that? Rona: Rare disease disproportionately affects children and young people. So, 7 out of 10 rare diseases develop in childhood and at the moment the Rare Disease Research Network hasn't really got a forum for including children and young people, and really that's partly because, and Jo can speak much more eloquently to this with her experience. Actually, we didn't do that at the start because we feel that this is actually a discreet piece of work that really needs to be done in collaboration with children and young people to make sure that it's done well so that they can engage in the platform. So, Jo, I don't know if you want to talk about how we're hoping to take this forward. Jo: Yeah, so we're busy developing a project plan at the moment which we're hoping to get funding for to work over eighteen months with a team of young adults with rare conditions, probably from our Unique Feet community and keep it local because we already have a good relationship with them and they have our trust. But the idea would be to work with lots of other young people's forums. So there's already ones established in and around our area, such as Pedal, which works with really small children, and there's also groups that are set up for young people with cancer. So we've already had lots of great conversations with them about how we can work with them, how they can help us sense-check our project, and then in return we can help them better understand research and their ability to be involved in that. But ultimately by the end we want to run focus groups, we want to develop some peer mentors within our community, so young adults who've, you know, perhaps come out the other end of a period of transition into adulthood who can support other young people with rare diseases to also become researchers, to come up with their own ideas and their own questions, and to sense-check projects that come through the platform. So it's a really exciting opportunity to truly involve the people who are affected most by rare conditions but we know through our My Story, My Way project that this has to be done gently, carefully, given time and done really thoughtfully. So that's our next step and we hope to be able to share those learnings with people so that it can be done elsewhere. Mel: And do you see the network also working with children with learning differences? Jo: Absolutely. We'll invest a lot of time and energy in ensuring that materials are accessible, inclusive and suitable for the community that we're working with. Mel: So looking to the future, how do you think, Rona, can patient-led research help to shape the future landscape? Rona: So I think, Jo used the term earlier, kind of this is really turning research on its head, so it's really putting patients right at the centre of research, so it just makes sure that it's absolutely driven by what matters to them to get the outcomes that matter. And, again, it's just got all that benefit of efficiency and really answering those questions that matter. Mel: And, Jo, do you think this could lead to more collaborative partnership, for example, between industry and academia, potentially leading to quicker clinical advancement? Jo: I would absolutely like to think so. You know, as CamRARE we run a companies forum which is a roundtable meeting for pharma and biotech companies and other organisations like Genomics England who are involved in the rare disease therapeutic space and diagnostics, and I think one thing that I find really heart-warming about those meetings is that, you know, different companies are able to sit around a table as competitors but with a very open mind to addressing the barriers and the bottlenecks that prevent them from getting drugs to patients. Because of course it's not just the research journey that's a challenge, it's the regulatory side of things at the end of that journey; just because you've created a great drug it doesn't matter in the end if it doesn't get to the patient. So, you know, access is critical and involving patients at the earliest possible moment to ensure that that treatment gets through to the regulators and gets access to patients is the only way forward. We had a recent companies forum meeting where we were exploring health-related patient reported outcome measures, or PROMs, and we had a speaker from NICE who's the regulatory body, we had a speaker from Sheffield University who was talking as an academic about developing PROMs for industry and for patient groups and we had Emily Reuben, the CEO of Duchenne UK, and we had an amazing discussion about the importance of involving the patient community from the outset. And the academic explained that developing a PROM for Duchenne UK had taken them two years and it had taken them that length of time because they'd followed this careful thoughtful pathway of making sure that they didn't assume anything about what matters to patients. But that of course, as we said earlier, involves time, it involves financial commitment, it involves resources and the right attitude, but I do think that a platform like the Rare Disease Research Network can really try to harness all of those things by bringing the right people together – industry, academia and patients – to work together equitably. Mel: And with the network do you think you'll be getting the regulators in at that initial stage as well so that, like you said, the patients can gain access while we're dealing with their priorities, the regulators are informed at the very earliest stages so that we know the process that's being followed will ultimately lead to patients gaining access to the relevant therapies? Jo: Yes, I think this is really important, and there's actually, we've got a section on the new platform which really talks to each of the different stakeholders. ‘What's in this for me?' ‘Why is it important for you to be here and to join?' And one part of that is funders and that includes the regulatory bodies. And at the next companies forum meeting we're actually going to be bringing the Rare Disease Research Network Platform and its potential to the companies forum meeting and we'll have regulators involved in that. So, you know, we are constantly talking to people about why it's important for them all to be involved and all to see what matters. I think I'd like to advocate for an extra letter at the end of PPIEP - if we could squeeze a D in there at the end too. So over time that terminology has expanded to be Public Patient Involvement Engagement and Participation, which was added I think this year, but it would be lovely to have the D on the end and to include ‘Driven' because I think what's really important about this platform is that it's not just engagement and involvement, it's not just participation, it's initiated by and driven by patients. Mel: So I think we'll wrap here. Thank you to our guests, Jo Balfour and Dr Rona Smith, for joining me today as we discuss the role of patients in setting research agendas. If you'd like to hear more like this, please subscribe to Behind the Genes on your favourite podcast app. Thank you for listening. I've been your host, Mel Dixon, and this podcast was edited by Bill Griffin at Ventoux Digital and produced by Naimah Callachand.
Bernie McInally narrates his blog written for Dementia Researcher. In his guest blog, Bernie McInally, explores the often-overlooked needs of LGBTQ+ residents in care homes. Reflecting on his initial scepticism of the potential recruitment of LGBTQ+ community into studies, Bernie examines the unique challenges this group faces, including potential social isolation, distrust of care staff, and an increased risk of dementia due to health disparities. He highlights the importance of inclusivity in care home research to better understand and address the specific needs of LGBTQ+ residents, aiming for a future where this community receives equal recognition and support in healthcare. Find the original text, and narration here on our website. https://www.dementiaresearcher.nihr.ac.uk/blog-lgbtq-in-care-home-research/ -- Bernie McInally is a Clinical Studies Officer at NHS Lothian and the Neuroprogressive and Dementia Network. Bernie's background is in Nursing, working in Mental Health and with Older People. He retired from full time NHS clinical work, and is now back working in Clinical Research supporting delivery of the Enabling Research in Care Homes (ENRICH) Scotland. He is passionate about research delivery, and opening access to people in all communities. -- Enjoy listening and reading our blogs? We're always on the look out for new contributors, drop us a line and share your own research and careers advice dementiaresearcher@ucl.ac.uk This podcast is brought to you in association with the NIHR, Alzheimer's Association, Alzheimer's Research UK, Alzheimer's Society and Race Against Dementia, who we thank for their ongoing support. -- Follow us on Social Media: https://www.instagram.com/dementia_researcher/ https://www.facebook.com/Dementia.Researcher/ https://twitter.com/demrescommunity https://www.linkedin.com/company/dementia-researcher https://bsky.app/profile/dementiaresearcher.bsky.social
Dr Sam Moxon, narrates his blog written for Dementia Researcher. Sam's blog, offers a step-by-step guide for academics interested in turning their research into a successful business. Drawing from his own experience co-founding a spin-out at the University of Birmingham, Sam shares insights on how to transform an idea into a viable enterprise. The blog covers crucial aspects such as finding the right support, protecting intellectual property, market validation, negotiating with the university, and securing funding. It's a must-read for anyone considering the journey from innovation to commercialisation, packed with practical advice and personal reflections. Find the original text, and narration here on our website. https://www.dementiaresearcher.nihr.ac.uk/blog-how-do-you-create-a-university-spin-out/ #Spinout #Innovation -- Dr Sam Moxon is a biomaterials Research Fellow at University of Birmingham. His expertise falls on the interface between biology and engineering. His PhD focussed on regenerative medicine and he now works on trying to develop 3D bioprinting techniques with human stem cells, so that we better understand and treat degenerative diseases. Outside of the lab he hikes through the Lake District and is an expert on all things Disney. -- Enjoy listening and reading our blogs? We're always on the look out for new contributors, drop us a line and share your own research and careers advice dementiaresearcher@ucl.ac.uk This podcast is brought to you in association with the NIHR, Alzheimer's Association, Alzheimer's Research UK, Alzheimer's Society and Race Against Dementia, who we thank for their ongoing support. -- Follow us on Social Media: https://www.instagram.com/dementia_researcher/ https://www.facebook.com/Dementia.Researcher/ https://twitter.com/demrescommunity https://www.linkedin.com/company/dementia-researcher https://bsky.app/profile/dementiaresearcher.bsky.social
Dr Sam Moxon, narrates his blog written for Dementia Researcher. In this blog, Sam provides practical advice for PhD students and postdocs attending conferences alone, especially overseas. Sam shares his personal experience, acknowledging that while solo travel can seem daunting, it offers significant personal and professional growth opportunities. He gives key tips, such as preparing thoroughly for the trip to reduce anxiety, obtaining an e-SIM to stay connected, using long-haul flights as a chance to relax, arriving early to explore the area, and making efforts to network at the event. Ultimately, he emphasises that solo travel can be a rewarding and empowering experience. Find the original text, and narration here on our website. https://www.dementiaresearcher.nihr.ac.uk/blog-flying-solo-to-an-international-conference-a-survival-guide/ -- Dr Sam Moxon is a biomaterials Research Fellow at University of Birmingham. His expertise falls on the interface between biology and engineering. His PhD focussed on regenerative medicine and he now works on trying to develop 3D bioprinting techniques with human stem cells, so that we better understand and treat degenerative diseases. Outside of the lab he hikes through the Lake District and is an expert on all things Disney. -- Enjoy listening and reading our blogs? We're always on the look out for new contributors, drop us a line and share your own research and careers advice dementiaresearcher@ucl.ac.uk This podcast is brought to you in association with the NIHR, Alzheimer's Association, Alzheimer's Research UK, Alzheimer's Society and Race Against Dementia, who we thank for their ongoing support. -- Follow us on Social Media: https://www.instagram.com/dementia_researcher/ https://www.facebook.com/Dementia.Researcher/ https://twitter.com/demrescommunity https://www.linkedin.com/company/dementia-researcher https://bsky.app/profile/dementiaresearcher.bsky.social
This week, we're joined by Joanne Henry from NIHR, winners of the 2024 Northern Power Women Inclusive Innovation Award.Joanne shares how winning boosted their mission to transform healthcare and ensure fair access to health research for underserved communities in Greater Manchester.From the joy of winning to a celebration that involved everyone from finance to communications, Joanne's story highlights the power of teamwork and community.Listen to learn:Joanne's journey from children's nurse to leader in health research How the NIHR team is changing the face of healthcare and research for underserved groups Why innovation is essential in tackling health inequalities The importance of celebrating success as a team You can now nominate for the 2025 Northern Power Women Awards to be in with a chance of celebrating with changemakers, trailblazers and advocates on 6th March 2025! Nominate now at wearepower.netSign up to our Power Platform to check out our events calendar here. Keep up to date on the latest news from We Are Power : Twitter, LinkedIn, Instagram & Facebook Sign up to our newsletter.
In this episode, we talk to Dr Michelle Rickett, a Research Associate on the NIHR funded EXTEND study based at the School of Medicine at Keele University. Title of paper: Collaboration across the primary/specialist interface in early intervention in psychosis services: a qualitative studyAvailable at: https://doi.org/10.3399/BJGP.2023.0558Early Intervention in Psychosis (EIP) service users may be referred from, and discharged back to, primary care. There is limited research on patient and carer experience of discharge to primary care from EIP services and little guidance around planning and implementation of discharge. This paper explores experiences of EIP care and discharge from the perspectives of service users, carers and healthcare professionals in EIP services and primary care. It explores the patient journey through EIP services, highlights the lost connection with primary care, and makes recommendations for more collaboration between primary and specialist care, particularly around physical health monitoring and management, which might improve patient experience and outcome.
In this episode, we talk again with Jen MacLellan, a qualitative researcher based within the Nuffield Department of Primary Care Health Sciences at the University of Oxford. Title of paper: Unpacking complexity: GP perspectives on addressing the contribution of trauma to women's ill healthAvailable at: https://doi.org/10.3399/BJGP.2024.0024Significant challenges and uncertainties reside in how best to manage the link between mind and body in communication with patients and in healthcare pathways. Lack of supportive resources to deliver holistic, trauma informed care risks practitioners (inadvertently) avoiding discussion of the contribution of distress in the illness presentation. A trauma informed systems level approach would support integration of psychological support within multiple care pathways and support wellbeing of practitioners providing care.This study was funded by the National Institute for Health and Care Research (NIHR) Policy Research Programme (NIHR202450). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.
Dr Martyna Matuszyk, narrates her article written for Dementia Researcher. Martyna shares news that the Alzheimer's Society is investing over £9 million in three Doctoral Training Centres to support early career researchers in dementia research. This funding aims to nurture a new generation of scientists by providing world-class training and resources, encouraging innovative ideas, and building sustainable research capacity. The centres will focus on specific areas, such as vascular and immune contributors to dementia, Lewy body dementia, and integrated dementia care, to advance understanding and treatment of dementia, ultimately leading to life-changing breakthroughs for those affected by the condition. Find the original text, and narration here on our website. https://www.dementiaresearcher.nihr.ac.uk/alzheimers-society-invests-9m-in-doctoral-training-centres/ #DementiaResearch Note: The DTC's will start to advertised funded studentship opportunities from September 2024, keep an eye on Dementia Researcher job listings. -- Dr Martyna Matuszyk is a former postdoc from The University of Sheffield where she worked on Alzheimer's disease and ALS. Martyna is now Research Communications Officer at Alzheimer's Society. Her main role involves communicating dementia research to the wider public through various outlets. She is also a research spokesperson for the charity, so you might hear her voice on local radios when big dementia stories hit the news! -- Enjoy listening and reading our blogs? We're always on the look out for new contributors, drop us a line and share your own research and careers advice dementiaresearcher@ucl.ac.uk This podcast is brought to you in association with the NIHR, Alzheimer's Association, Alzheimer's Research UK, Alzheimer's Society and Race Against Dementia, who we thank for their ongoing support. -- Follow us on Social Media: https://www.instagram.com/dementia_researcher/ https://www.facebook.com/Dementia.Researcher/ https://x.com/demrescommunity https://bsky.app/profile/dementiaresearcher.bsky.social https://www.linkedin.com/company/dementia-researcher
Dr Ayokunmi Ojebode, narrates his blog written for Dementia Researcher. In his guest blog Ayokunmi, examines the intersection of poetry and dementia care. Drawing from his extensive experience as a creative writer, scholar, and dementia care worker, Ayokunmi shares some of his own work and discusses how poetry serves as a powerful medium for expressing the complex emotions and experiences of individuals living with dementia. He highlights the therapeutic value of poetry in supporting the well-being of both patients, people living with dementia and caregivers, while also advocating for greater recognition of the personhood and dignity of those affected by dementia. Find the original text, and narration here on our website. https://www.dementiaresearcher.nihr.ac.uk/blog-poetic-tales-from-dementia-wards/ -- Dr Ayokunmi Ojebode is a creative writer, lecturer and researcher with eight years of experience as a university faculty. He is an Honorary Research Fellow at the School of English, University of Nottingham and a Member of the Institute of Mental Health Nottingham. He is also a Bank Mental Health Support Worker with Nottinghamshire Healthcare NHS Foundation Trust and has worked across different care homes and hospitals in the East Midlands. He is a Volunteer Call Companion for the Alzheimer's Society, a Focus Group participant for the Alzheimer's Society's Companionship Project and a Lead Social Media and Community Strategist for Alzheimer's Disease International (ADI), providing care and expert counsel for people with dementia and their carers through telephone service, community and digital engagements. Dr Ojebode is a dynamic researcher with a track record in the field of Dementia, Arts and Poetry. -- Enjoy listening and reading our blogs? We're always on the look out for new contributors, drop us a line and share your own research and careers advice dementiaresearcher@ucl.ac.uk This podcast is brought to you in association with the NIHR, Alzheimer's Association, Alzheimer's Research UK, Alzheimer's Society and Race Against Dementia, who we thank for their ongoing support. -- Follow us on Social Media: https://www.instagram.com/dementia_researcher/ https://www.facebook.com/Dementia.Researcher/ https://twitter.com/demrescommunity https://www.linkedin.com/company/dementia-researcher
Dr Sam Moxon, narrates his blog written for Dementia Researcher. In this blog, Sam explores the concept of cognitive reserve, which acts as a protective "hidden fortress" against dementia. Cognitive reserve refers to the brain's ability to adapt and remain resilient in the face of damage or aging, allowing some individuals to maintain cognitive function despite significant brain pathology. The development of cognitive reserve starts in childhood and is influenced by factors such as education, social interactions, and mentally stimulating activities. Understanding and enhancing cognitive reserve through lifestyle choices like learning, social engagement, and healthy habits can significantly reduce the risk of dementia and support healthy brain aging. Find the original text, and narration here on our website. https://www.dementiaresearcher.nihr.ac.uk/blog-the-minds-hidden-fortress-cognitive-reserve-and-dementia/ -- Dr Sam Moxon is a biomaterials Research Fellow at University of Birmingham. His expertise falls on the interface between biology and engineering. His PhD focussed on regenerative medicine and he now works on trying to develop 3D bioprinting techniques with human stem cells, so that we better understand and treat degenerative diseases. Outside of the lab he hikes through the Lake District and is an expert on all things Disney. -- Enjoy listening and reading our blogs? We're always on the look out for new contributors, drop us a line and share your own research and careers advice dementiaresearcher@ucl.ac.uk This podcast is brought to you in association with the NIHR, Alzheimer's Association, Alzheimer's Research UK, Alzheimer's Society and Race Against Dementia, who we thank for their ongoing support. -- Follow us on Social Media: https://www.instagram.com/dementia_researcher/ https://www.facebook.com/Dementia.Researcher/ https://twitter.com/demrescommunity https://www.linkedin.com/company/dementia-researcher
On the season 2 finale of ACRO's Good Clinical Podcast, Steve Cutler (CEO, ICON plc) and Professor Lucy Chappell (CEO, NIHR) join the podcast to discuss the current clinical research landscape in the UK.They dive deeper into the competitive nature of bringing clinical research to a country, process-related challenges that need to be addressed in order to realize the benefits of AI and other technologies, and importance of bi-directional communication between CROs and government.
Researcher Lauren Herlitz and theatre maker James Baldwin talked to 14 young people in care or care leavers about their experiences of seeing a doctor. The frank conversation covers being able to trust a doctor, opening-up about mental health, being affected by trauma, and being judged by healthcare professionals. Lauren and James invited two experts in child health, Dr. Claire Agathou and Prof. Monica Lakhanpaul, to respond to young people's views. They talk about the difficulties young people face in accessing healthcare and why some doctors find it hard to start conversations about mental health or trauma. The conversations with young people, aged 13 - 22 years, were recorded face-to-face between November 2022 and April 2023 in Greater London and South England, and the dialogue with Claire and Monica was recorded online in September 2023. This podcast was funded by the National Institute for Health and Care Research (NIHR) through the Children and Families Policy Research Unit (PR-PRU-1217-21301). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care. Transcription link: https://www.ucl.ac.uk/children-policy-research/unheard-voices-young-people-cares-experiences-speaking-doctors Date of episode recording: 2024-01-05T00:00:00Z Duration: 00:37:27 Language of episode: English Presenter:Lauren Herlitz; James Baldwin Guests: Young people (anonymous); Dr Claire Agathou; Prof Monica Lakhanpaul Producer: James Baldwin
Welcome back to another episode of the Pharmacist Diaries podcast! In this episode, we dive into the topic of work-life balance and managing stress as a consultant pharmacist. Our guest, Jo Crook, a consultant pharmacist in paediatrics at King's College Hospital NHS Trust, shares her inspiring journey in the pharmacy field while balancing her career and family life. Jo Crook is a Consultant Pharmacist specialising in paediatrics, focusing on children with liver disease, including those who have had liver transplants, and medication adherence. She is actively involved with the Neonatal Paediatric Pharmacy Group (NPPG) organising committee and works on national projects to improve health outcomes related to medicines for children. Jo recently completed an NIHR pre-doctoral fellowship, enhancing her clinical academic skills and paving the way for a PhD aimed at supporting families with post-liver transplant medication adherence. Key Takeaway Messages: Importance of Setting Boundaries: Jo highlighted the significance of learning to say no and having a clear strategy in mind when it comes to balancing work and personal life. Setting clear objectives and priorities can help ensure that both professional responsibilities and personal well-being are taken care of effectively. Utilising Part-Time Work for Flexibility: Jo shared her experience of working part-time and how it provided her with the flexibility to not only deliver on her professional commitments but also pursue her passions and interests outside of work. Part-time work allowed her to focus on tasks that she was genuinely passionate about, enhancing her overall productivity and job satisfaction. Support and Delegation: Jo emphasised the importance of delegating tasks and providing support to team members. By trusting her colleagues and offering guidance when needed, Jo created a supportive work environment where team members felt empowered to take on responsibilities and seek assistance when required. This approach not only fosters a collaborative work culture but also ensures that workloads are managed effectively. Sign up to our FREE community called Behind The Mic! We are excited to engage with you and provide you with the support & guidance you need to get started. Register here: https://behindthemic.circle.so/ SIGN UP to my NEWSLETTER below so you'll be the first to know when new episodes are being released. You'll also receive regular inspiration, tips, tools, and free content. https://pharmacistdiaries.ck.page/newsletter PARTNERSHIPS and DISCOUNTS: The Naked Pharmacy is offering my podcast listeners a 20% discount on all their products. Use discount code PD20 at checkout to receive the offer. https://www.thenakedpharmacy.com/
This bulletin intro was brought to you by Ian Kingsbury from East Genomics Nottingham University Hospitals NHS Trust. Keep listening for more team members introducing other episodes. If you're a clinical researcher at NUH or the University of Nottingham and want to be voice of the podcast contact us at R&Icomms@nuh.nhs.uk. #BioResource, #GLADstudy, #NIHR, #Chest drains, #PneumocystisPneumonia, #NottinghamUniversityHospitals Links East Genomics – https://www.eastgenomics.nhs.uk/ Join the world's largest study of anxiety & depression - https://gladstudy.org.uk/ PCP – If you are interested in contributing to the development of this research proposal, please contact Vikki Flemming, Consultant Clinical Scientist, Clinical Microbiology, vicki.fleming@nuh.nhs.uk Chest drain - So If you, or someone you care for, has had a chest drain fitted as part of their treatment, please email: GetInvolved@nuh.nhs.uk BioResource – bioresource.nihr.ac.uk or Joanne.Llewellyn@nuh.nhs.uk This Podcast is brought to you by the Research & Innovation team at Nottingham University Hospitals NHS Trust. Follow us on @ResearchNUH and @NottmBRC, or email R&Icomms@nuh.nhs.uk. If you haven't already, please subscribe to the podcast where-ever you get your podcasts, and like/review us on Apple Podcasts or Spotify especially. It's For Science.
Genomics has changed considerably over the past 10 years, and we are now exploring how to integrate it into routine healthcare. In this episode, our guests reflect on this evolution and discuss how the key learnings from the past 10 years can shape the genomics ecosystem of the future. They highlight the importance of partnership across teams, organisations and participants, emphasising the importance of keeping participant and patient benefit at the heart of research, whilst also addressing the ethical and safe storage of patient data. In this episode, our host, Helen White, who is the Participant Panel Vice-Chair for cancer at Genomics England, speaks with Dr Rich Scott, CEO of Genomics England. "Our goal is to ensure that everyone can benefit from the advancements in genomics, but this requires collaboration across disciplines and a commitment to ethical practices in managing and sharing genomic data." You can read the transcript below or download it here: https://files.genomicsengland.co.uk/documents/Podcast-transcripts/How_can_we_work_in_partnership_towards_a_new_era_of_genomic_medicine_and_research.docx Helen: Welcome to Behind the Genes. Rich: There's a whole new era I see coming in terms of the therapies that are directed at the causes of genomic conditions, both in rare conditions and in cancer, and thinking as we do that, about how we structure the system to generate evidence, and to respond to it, and have a conversation about what the right balance of evidence for patients to make a choice about their own care. Helen: My name is Helen White and I am the Participant Panel Vice Chair for Cancer, at Genomics England. On today's episode I'm joined by Dr Richard Scott, Chief Executive Officer for Genomics England. And today we'll be discussing Richard's recent appointment as CEO, lessons learnt from the last ten years in the evolution of genomics in healthcare, and how these learnings will be taken forward in the next ten years. And we'll also visit the importance of keeping participant and patient benefit at the heart of research, as well as the ethical and safe storage of patient data. If you enjoy today's episode we would love your support: please like, share and rate us on wherever you listen to your podcast. Before we dive into the interview with Rich, I wanted to take a moment to share my story and tell you a little bit about myself. I have been a member of the Participant Panel at Genomics England since 2018. It was the year before that when I was diagnosed with endometrial, or womb cancer, and was offered the chance to join the 100,000 Genomes Project, which felt like something positive at what was otherwise quite a scary time. It turns out that I have something called Lynch syndrome, that's a genetic condition that increases my chance of developing certain cancers, particularly womb and bowel cancer, which is actually a really useful thing to know as there are things I can do to reduce my chance of getting cancer; things like having regular colonoscopies and taking daily aspirin. I have now been on the participant panel for six years and one year ago I was appointed as Vice Chair for cancer. This is a new and developing role and I am excited to have so far helped recruit more people with lived experience of cancer to the panel and to be assisting Genomics England with connecting to organisations that advocate for people whose lives have been touched by cancer. So that's enough about me. I am delighted to be joined today by Richard Scott, and I am very much looking forward to our conversation. Welcome, Rich. Thank you. So Rich, you've recently been appointed CEO of Genomics England. Can you tell me a bit about your background and what brought you to this role? Rich: It's a really good question and it's one that doesn't have a really very simple answer. I guess what it boils down to is I guess I've always had an interest, even as a child, for whatever reason, in genetics and genomics. I have also then always been drawn to things where I can have an impact and particularly the impact in healthcare and that's what took me to being a medical student. And I guess it's that combination of that particular interest in genetics and being able to see, even when I was at medical school I qualified in 2000 that this was an area of medicine that was going to be really important in the future. And then as I trained, as I did a PhD and as I saw the technology develop and change and then when I saw the UK government and the NHS investing in genomics in a really foresighted way, I found myself eight or nine years sitting at Great Ormond Street as a consultant in clinical genetics where I still practice, I still do one clinic a month there as a clinical genetics consultant seeing families with rare conditions. But I could see when Genomics England was established that this was something, as I said, really foresightful where we could really collectively across the country make more of a difference together in terms of patient and healthcare outcomes. So I joined GEL eight or nine years ago initially in a subject matter expert role, and really found myself the more time it passed, understanding how working in my role at GEL and helping GEL be a really productive part of what is a busy genomics healthcare ecosystem in the UK, we can make a big difference, and that's the thing that just wakes me up in the morning, is realising how much there is left to do, being proud of the stuff we've done, the difference we've made to participants in our programmes already, but realising that many of those still need our support to do better and the big distance left to go before we really deliver on I think the long-term promise of genomics, and I feel my mixture of skills and experience make me really excited to be in the middle of that. Helen: Thank you. Yes, it sounds like you've brought many skills and experience, and interesting to hear that as a child you already had that interest in genetics and where that's taken you. Can you tell me what being CEO Genomics England means for you? What are your aspirations for your first year in this position? Rich: Well, I guess, as you can tell, I'm really excited to take on this role. As I said, as a doctor I'm always focused on the impact for patients and our participants and ultimately it's the broader health of the nation. And the role I see Genomics England playing and being able to play in the future, sort of building on that, the leadership position the UK's always had in genomics – you know if you look back to the discovery of the structure of DNA, the invention of sequencing technologies and also the clinical implementation coming from that government investment and the NHS investment, what excites me most about GEL is that we can be there, playing a critical role alongside others in that ecosystem, whether that's in the NHS, whether it's our participants and the patients who we're aiming to support academia and industry, to create a whole that's greater than the sum of the parts, and I genuinely feel that the UK remains uniquely placed to live out that potential that genomics has, engaging in the questions, not just you know, the scientific questions of: what could genomics test for? Or, how could this be implemented and is it cost-effective? But also being able to have the nuanced conversation of what we all and our participants in the public and general, expect in terms of the care we receive or how our data is looked after, and getting that really balanced view on how we chart a path forwards where we can really see big differences being made in the future, and I think always being honest to ourselves about where we are today and that things don't come in spotting some position a long time in the future that we want to navigate to, but also being really focused on the here and now and what is possible and what is evidenced, and what the next set of evidence or discussions or conversations in the public we need to have to help navigate ourselves there and that's where at the moment our focus at Genomics England is both being very clear sighted on where Genomics could go, and also thinking very clearly about where we are today, and so very much at the moment for us it's about focusing on the life service we offer to the NHS and we're really proud to be part of a world-leading whole genome sequencing service, the first national health service in the world to be providing that in the context of cancer and rare disease, and so offering and providing our service that contributes to that. Supporting researchers so that we can keep the flow of discoveries coming and also for example, making sure that our participants in existing programmes continue to get new answers as the science evolves. So, the last year more than 2,000 families had new findings fed back because of new knowledge that's accumulating, keeping that flow going. And then we've got three big research initiatives going on at the moment where we're really focusing on delivering around them. We've got a diverse data initiative where we're really focused on making sure the research library, the National Genomic Research Library, our participants are representative of the UK population, so the discoveries that we're supporting are relevant to everyone; our cancer initiative which is exploring the use of new sequencing technology in the context of cancer, and also looking at the use of image data and other modalities of data, alongside generic data to drive new discoveries. And then the third initiative is our newborn genomes programme, where we're asking a big question through a research study to generate evidence to ultimately answer the question: should every baby when they're born be offered whole genome sequencing? Most pressingly to improve and broader the range of conditions that we can look for that are severe and treatable. So, this year we're very much focused on delivering on those promises that we've made to our participants and our partners and through those programmes and very much with an eye to the future thinking about what we need to change in terms of the use of underpinning technology, so that we know that we've got the potential to scale, to think about the broader use of genomics in years to come as evidence evolves. Helen: So Rich, there have been many advances in genomics in the last ten years. What do you think are the big lessons from those last ten years, and what do you think the next ten years will look like for the genomics ecosystem, what impact will this all have on healthcare as we know it? Rich: So, genomics has changed extraordinarily in the last ten years thanks to shifts both in the technology, particularly the sequencing technology but also some of the computing technology that's there to deal with the scale of data. Ten years ago we were talking about the 100,000 genomes project and beginning the project itself, but it was still very early in the use of whole genome sequencing, that's gone from something where the big question around the 100,000 genomes project was: can this technology be used in routine care in cancer and for rare conditions, and if so, how do we do that? And we've learnt both I think about that specific question and as I mentioned, we're enormously proud to be part of enabling the NHS whole genome sequencing clinical service, so that has entered routine care. I think along the way the biggest lesson for me is actually one about this being about partnership and about working as a team across many different organisations and with our participants, and recognising that this isn't just about one set of questions, or it's not just about clinical or scientific questions, it's about joining everything up together back to that point around, so a discussion about what people expect – this is about doing stuff together and learning often quite complex lessons about practicalities is one things, for example, one of the really big lessons we learnt around the use of whole genome sequencing in cancer are just practical lessons about handling of tissue samples and the need to make sure the right fridges are available on the right corridor of a hospital, with plugs available to plug them into, through to questions around, as I say, people's expectations around how their data is stored, which it's used for, which again there's really strong precedent for, and as we explored, different uses of genomic technology, we shouldn't just take those previous answers for granted, we need to make sure we validate and check with people what their expectations are. So I think that's the big one for me is sort of the number of different angles with which one explores questions and the fact that this is very much about doing it together. I think just one other piece which is so easy for us here to take for granted is that doing things at national scale with national scale investment from government, from other funders and from the NHS is absolutely critical and when you look across the world, we are in an extraordinarily privileged position here in this country because of that investment and because that investment recognises the need critically to join clinical care and research in a whole, where you recognise that you're doing multiple things at once, but joining them up rather than them being two worlds, is really, really critical, and we're really lucky to be able to do that at national scale. So then thinking about what the next ten years might look like for the genomics ecosystem, I think lots of those things continue, so I think national scale and the need for ongoing investment to keep up our position at the forefront in terms of answering these big questions about the use of genomics in healthcare, and to where the evidence supports their implementation to roll them out and keep that link there between healthcare and research, and so making sure the systems talk to each other and I mean that in a digital sense as well as a human sense is absolutely critical. And then, so in ten years' time what are the areas of healthcare that will have been impacted, or could have been impacted by genomics, I'm really pleased that we're doing a better job for families with rare conditions and people with cancer than we were ten years ago, I think there's a long distance left to run even in those settings for us to do better and to continue to learn, so we expect our major focus to continue to be in those areas where we know they can have an impact and there's more to do. We also then have the different areas where if the evidence pans out to support the use of genomics or if we can implement systems that can support it there can be a big sort of area of growth. For example, our newborn genomes programme is asking questions and developing evidence so that in the future policymakers can decide should that become part of routine care, and I think that's something that could have become part of routine care in the next ten years if the evidence supports it and if that's something that the public support. If I were to pick one other area where there's a real potential for growth in the coming handful of years it's in something we refer to as pharmacogenomics. What that means is looking at your DNA code (genomics) to help make decisions about prescription of medicines and sometimes that's about avoiding these medicines in people who are at a higher risk of having an adverse reaction, or it's about tailoring the dose because of something about for example the way the person metabolises, chews up, the medicine and so can influence how much dose they need. That actually has an enormous potential; we all have variations in our DNA code that influence how we respond to or metabolise medicines. If you look across primary care, GPs and so forth, primary care physicians and in secondary care, hospital care, I think there's good evidence that actually probably half of all appointments, interactions in those settings, if you were to have DNA data available that could influence how prescription choices are made; sometimes that's about knowing that you're doing the right thing, giving the normal prescription, but sometimes it's about modifying it, that's an area where I think there's a real potential for growth and that's an area that the NHS also really recognise and we're exploring ways in which we might look into that and think about how that might be implemented, because actually a lot of the questions there are about how you make sure the right data, the right information is available to clinical teams and patients at the time that prescriptions are being made. There's also real potential more broadly in thinking about more common disease settings, there's lots of work going on from various research studies looking at the value of what people sometimes refer to as polygenic risk scores or integrated risk scores, where we use genomics as an element of estimating risk for common diseases like heart disease or cancer, that's something where the evidence is being worked on and is developing, I think we'll see a lot of evidence come out in the coming years and I think that will then influence how we implement genomics to help as part of that risk estimation process, which is routine now in GP practices where you go for an NHS health-check they do it with lots of complicated stuff, at the moment not genomics, and we'll see how that plays out in the years to come. So I think there's enormous room for growth where genomics where at the moment it's making an important difference to people with certain conditions that we can do better on. In the future I see it becoming very much more part of the routine day to day of healthcare. As we make that transition there's lots to work through about the evidence, the order in which that's done and the way in which we, for example, store data, and make people part of the choice about how their data is used and what I'm really excited about in Genomics England is the role we play in the middle of that, bringing our particular expertise around what we call bioinformatics, which is sort of managing genomic data at big scale, particularly national scale to support healthcare and research, generating evidence that can help inform policy, and also critically drawing things together into the conversation amongst different players in the ecosystem and participants in the public so that we can not just think about evidence in a sort of terribly scientific way but we think about it in the round. Helen: That's really interesting to hear you speak a lot about getting that evidence because that's critical, but that takes a long time doesn't it, so for example with the generation study, the newborn study it's really important to measure the benefits of that if you're testing young babies, newborn babies for diseases that if you pick up a condition that condition can be treated and something can be done about it early rather than poor parents going through this diagnostic odyssey, but also it's that balance isn't it with not leading to any harm, so if a number of parents come out of that thinking their baby might get a condition and it never happens there's potential there isn't there. But I think in terms of the public understanding of how long it takes to get evidence and everything else that needs to go on in the background I don't think it's always particularly clear that that's a massive process that has to be gone through and there's a lot of work going on behind the scenes – you can't just do these things. I think as patients/members of the public we're eager to get on and for change to happen and things to be better but it's a big, big process, but also good to hear that you talk about it being a collaborative approach, it's not just Genomics England, it's the NHS, it's members of the public and patient voices, it's other organisations working in partnership, it's a big undertaking. Rich: No, it is and I think that one of the words you used there was impatience, and I think that's healthy and important to recognise, it can be easy, particularly for example as a doctor, sat in a clinic room to accept the status quo, and at the same time, one needs to recognise the complexity of the questions, the balance, the need to generate high-quality evidence to inform those opinions and I think combining both that sort of impatience and dissatisfaction with the status quo, and that mind-set about thinking really thoroughly and collaboratively about the right evidence that is needed to change policy. Helen: Yes, really important that those patient voices are there from the beginning, from the planning of obtaining this evidence and that you're measuring the things that matter most. Rich: One of the areas where I think we've seen that play out, another area where I really see the potential for growth in the future is much more genomics-enabled treatments. We and you and the participant panel have helped us think about there's a whole new era I see coming in terms of the therapies that are directed at the causes of genomic conditions, both in rare conditions and in cancer and thinking as we do that about how we structure the system to generate evidence and to respond to it and have a conversation about what the right balance of evidence for patients to make a choice about their own care, but also policymakers to make choices about funding, decisions and safety decisions, is really important and we've been supporting to a wider work in cancer in the UK called the Cancer Vaccine Launchpad, and likewise we're part of something we call the Rare Therapies Launchpad, where in those two areas we're exploring that, and that's another area I think of real potential in the coming years, and also real nuance as we construct a way of navigating that together and making the most of the potential, but not just sort of rushing in and pretending we know all of the answers at the outset. Helen: And those launchpads are of particular interest to participants in the wider patient population, there are a lot of people and children with rare, ultra-rare conditions who are desperate for treatments that just aren't available right now, equally for cancer patients there's a big need isn't there for more effective treatments, fewer side effects, that target that person's particular cancer, so it's good news I think for the wider public. It does seem that innovation and partnerships are crucial to Genomics England's activities so how does Genomics England ensure that participant and wider patient benefit are at the heart of these activities? Rich: I think one of the really important things is actually governance is sometimes a boring word, sounds like it, but I think thinking about how we've structured the organisation and placed you, as the participant panel, as part of our governance to make sure that when we're thinking about for example access to data in the National Genomic Research Library, participants are sort of driving those decisions, it's an independent committee that makes those decisions with representation from our panel. One of the things is thinking about the governance and making sure that you as our participant panel hold us to account for the decisions that we're making, which I think is really critical. I think then also as we've learnt a lot over the years, not always getting it right, about how we make sure that participants, or potential participants in the public are involved from the outset in the design of programmes because it always helps. I think certainly before I joined Genomics England I think I would have been unsure about the best ways of going about that and that brings with it sometimes a nervousness. I think the main advice I would say to people listening is to have confidence that just getting stuck in and have conversations is the way to do it. There are then also all sorts of expertise that we've really benefited from being to bear in terms of ways of doing that engagement work and that will come; the first thing is to have the confidence and the desire to put that at the centre of how you decide where your focus should be and how you design programmes. Helen: I think Genomics England has been very successful with that by integrating that patient voice from the very early days and here we are what eight years on I think now, and yes, hopefully we'll be there for some time to come yet, as long as Genomics England exists. So Rich, with more and more health data being stored, how do we ensure that this sensitive personal data is stored and used safely and ethically across the genomics ecosystem. And actually while we're on this question, can you just explain what genomics ecosystem means, because we use that term I think quite a lot, but I think it's not necessarily understandable to the wider public? Rich: What I mean when I talk about it is I mean the mixture of different people, whether that's sometimes organisations, us, Genomics England, the NHS, the NIHR, National Institute for Health Research; industry partners whether they're people who are from pharma companies or from biotech, academic researchers, participants in programmes – everyone who comes together to work on genomics in the UK and a bit like the word as it's used in biology, it's a sort of busy ecosystem with all sorts of people playing their own role and then working together, and so I think it's a really important thing to recognise that we're part of that and in fact it's one of the things I love most about my role at Genomics England is thinking about all of the different partners that we need to work with and to those outside it I think it can also be a bit intimidating, because it's hard to keep up with who on earth everyone is. So then thinking about the question of how we make sure that data's stored and looked after and used in the ways that people expect and safely and so forth, I think that's absolutely at the heart of my role and our role. And I think one thing is actually always sort of starting at the: why are we doing this? What benefits are we seeking to bring to people? Is that what they expect? What have they signed up for if you like? But that's in a research study or when they've decided to say yes to having a particular test, which is the same in any part of medicine. And if we use that to drive our decisions, that's what's so critical. And so that's where thinking about programmes we run, and also the things that we think might be worth something that we should prioritise in the future is always first driven by the benefit that you might be bringing, weighing up the costs and the potential downsides and harm that might be caused by the use of genomic data in that way and that's what should always drive things, and there isn't a one-size-fits-all, you know, genomic data should be used and stored in this way and that's one of the things that I think making sure that participants and the public are at the centre of the conversation is absolutely critical, it turns out that genomic data is very much like health data at large in many senses and it's very precious for those reasons. It is also special in a few ways. One of the ways that's sort of peculiar if you like is that pretty much the DNA sequence, the genome, that you're born with, is the same one that you hold throughout your life, that's different from say if you do a blood count or something that varies for various reasons over your life and most things in medicine do change quite meaningfully over a much shorter time period. One of the things about the DNA code: A) it makes it more precious because it's very much about you, your whole life; also it makes it more useful and reuseable in many ways, so one of the things that we think about a lot more in genomics is about the storage and reuse of data on an ongoing basis through the lifetime. And I do think that that model in certain settings and potentially more broadly as evidence accumulates, may well be the path that we take forward where you consider your genomic data part of your health record where it can be used and reused. And what we need to do is explore why you would in the first case generate someone's DNA sequence, and what sort of sequence, is it a whole genome or less than a whole genome? What would you use it for in the first place when you first generate it? And what other uses could there be to support the healthcare and have you involved them or the public more generally in decisions about how it's used? Because we do, as I said, see the potential for genomics being just becoming part of the fabric if you like of healthcare, good healthcare, the best healthcare. Linked to that is the point on research as well, like where people are happy for it, holding their genomic data and understanding how that impacts on longer term health outcomes, something we'll continue to learn about for years and years. So I think the first point is about focusing on the why and whose data it is, one's own genome belongs to you, it doesn't belong to anyone else, what people are happy with and consent to and expect and then always holding that in mind as one makes the choices is critical. I've talked about how we think the governance and the involvement of the participant panel is really critical for that as well. And then it also comes down to doing in various ways, the job that people would expect in terms of, for example, that safety piece, using the very latest tooling to make sure that it's held in a secure way, that it's backed up so that it won't be lost etc. and bringing sort of the right, very good minds around some of those more technical questions, but always with the expectations of the people whose genomes they are in mind and to say are we living up to their expectations, are we doing what they would expect? So, Helen, I wondered if I could ask you a couple of questions. The first one I wanted to ask is what you're hopeful for in the coming years as a participant panel member? Helen: Thank you. I've actually already posed these questions to some of the other panel members, so I'll try and make sure I include their responses here as well as mine, but I think it's important to hear from everybody, not just me, Rebecca Middleton and Emma Walters have recorded their responses as well. I think the four main things that panel members are hopeful for is the coming years, the first is equitable access to whole genome sequencing, basically everybody who needs whole genome sequencing should get access to it regardless of where they live, their income, ethnicity or disability, so that's something that we're hopeful will get better over the years. We know this is essential to improving healthcare, to improving outcomes for patients and generally for sort of greater inclusivity and in genomic research, we want as well as Genomics England, the data is the National Genomics Research Library to be representative of the population as a whole, not just the people who 1) are offered, and 2) agree to have their data in the library. And also, obviously the more data that is held in that library, the more opportunity there is for research across those rare and ultra rare conditions and rare and less common cancers, where it's all about numbers, you need numbers of sets of data in order to draw things together and make conclusions to look for patterns. And the other thing which I guess comes more under the umbrella of the NHS is that the panel is quite keen, they want everybody who's undergoing genomic testing to receive good support and after care, I think regardless of whether that testing is via the NHS or as part of a research study, sometimes it will be both, but that's for the patients at the coal face that is obviously critically important. The second, I think broad theme, coming from the panel members' responses is that I think you've mentioned this already, is increased understanding of genomics amongst the general public is really important – there's a need to demystify genomics and to generally improve public awareness of its benefits and to get those conversations going around its regulation and its ethical use, but to do that you need to get meaningful engagement from a wide range of people, you know, that's not always straightforward, there are lots of challenges there, it's all about prioritising inclusivity, accessibility, to make sure you get diverse views and perspectives on genomics and on genomics research. The other thing that came out very strongly from the responses which we have talked quite a bit about already is about this individualised healthcare. I think we as a panel are very hopeful that there will be this shift towards treatment strategies that are tailored more to the individual and their specific health condition, rather than a one-size-fits-all approach, we want effective treatments that will minimise side effects but also through the use of pharmacogenomics, to make sure if there's a risk of a severe, sometimes life-threatening side effect that that can be identified and that individual doesn't have that treatment either at all or has a lower dose, so it's not so toxic. And let's hear from Emma who talks about this. Emma: My hope is that we move to a truly individualised healthcare system and I'm really excited to see how in particular pharmacogenomics changes the healthcare landscape. For a long time we've gone with a one-size-fits-all approach, and that's easy to deliver on a large scale basis that the NHS works on, but we know fundamentally that's not how patients work, so to be able to consider individualising medication and knowing which won't work, interests and excites me. Helen: So the panel is also very hopeful about the development of those innovative therapies, and you talked about the rare therapies launchpad and the cancer vaccine launchpad, because those offer real hope for treating previously untreatable conditions and generally improving accessibility to treatments. And we're also hopeful that there will be a much better understanding of diagnosis of cancer, through things like the multi-model programme, because although there's lots and lots of research going on with cancer there's still a long way to go to have more effective treatments and to improve diagnosis of cancer. And then just finally just in response to your question, patient and public involvement, this is what the participant panel is all about, we are a group of individuals whose lives have all been touched by either a rare condition or by cancer currently, either we've had that condition ourselves or it's affected our loved one, and we do bring these diverse views and perspectives to Genomics England and I think we have a crucial role in influencing its decisions about what it does with participant data and who has access to that data. It's critically important that Genomics England listens to what matters to the people whose data it holds and who do that, as Rebecca here explains. Rebecca: Genomics is a fast-moving science and it has the impact to change lives and healthcare for future generations, but genomics is a science of people and therefore the only way you can truly understand the limitations and opportunities of it is to talk eye to eye to the very people it will impact, and not everyone will agree on everything. But how we understand genomics and its power to transform healthcare, our own and that of our children and the ones we love, can only progress at the pace of the people that it will benefit. It's a simple equation but it's not maths and indeed not science: we are all different and unique, our emotions, experience and history will be wrapped up in our viewpoints and thoughts, and that's where the panel comes in, representing and advocating for the very many different voices of genomic healthcare, ensures Genomics England is stronger, healthcare design is more meaningful and research is more impactful. I have no doubt that the panel of the future will continue to be heard and understood at Genomics England, and I hope it continues to grow to reflect more diverse voices and experiences and continues to be the people inside the science. Helen: Finally, the panel is also hopeful for increased public and patient involvement in genomics research, this is integral for shaping research both academic and commercial, it helps with identifying research priorities, developing new treatments, basically getting that voice of the patient in there to tell researchers what's the most important and what matters to them. Rich: So another question Helen, how do the panel feel about the changing genomics landscape? Helen: A good question and I think overall it's a balance between excitement and hope on the one hand, and a bit of apprehension and caution on the other. So the panel is really excited about the advances going on in healthcare, we're entering an age now where we're promised a much more proactive, as opposed to reactive approach to healthcare. You were talking earlier Rich, about having your genome sequence, and this is something that you have for life, it's like your passport, your fingerprint, so from infancy to old age you've got this data which is held somewhere which holds so much promise of predicting if you might develop a disease, whether you might react badly to a drug, so ultimately it offers great potential to improve outcomes for patients, their families and the NHS. Again, we spoke earlier about this holds so much promise for producing the diagnostic odyssey that so many parents go through when the children are born with a condition that doesn't have a diagnosis, potential to diagnose things like cancer a lot earlier where it's more treatable and to prevent disease as well, I know that's something Genomics England isn't specifically looking at, but through screening programmes, using things for example like circulating DNA which may be able to pick up that there are things going on and picking things up earlier means that those things can be dealt with earlier. I mean thinking of my own personal example, I know I have Lynch Syndrome, I know that I am at risk of developing bowel cancer now, but that means I can do something about it. So I have my colonoscopies every two years, I take aspirin every day because that reduces my chance of getting bowel cancers and I'm much more symptom-aware, so having that knowledge up front is very helpful in being able to move forward and reduce my chance of getting an advanced cancer. The panel is also very excited about the ongoing collaborations and the novel therapies that are being developed through the rare therapies launchpad, these offer a lot of hope for treating previously untreatable conditions, and improving accessibility to treatments, and obviously more targeted treatments for cancer, you know, we'd need more effective treatments for cancer but with reduced side effects, so that in a nutshell, those are the other positive sort of things that the panel feel excited about. Where they're slightly more apprehensive or concerned, I mean they do acknowledge that there are challenges ahead and there are big concerns about the NHS's ability to cope with increase in demand for genomic testing and particularly worries about education and training of healthcare professionals in genomics, how do they effectively communicate research findings or results to patients if they don't have a broad understanding of genomics? And then finally, let's hear from Emma. Emma: I think I'm excited but cautious. I think it's really important to acknowledge that the research being undertaken is groundbreaking and the vast majority of clinicians have very little to know genomics education, and translating these findings into tangible benefits for participants is so very important, and something I think we've really got to make sure we don't lose sight of. Helen: We talked earlier about awareness among the public about genomics and we do feel that there's a need to drive education forwards, you know but this is challenging, given the rapid pace of developments that we've spoken about, I think even for the panel members who I would say are relative experts in genomics now it's hard to keep up to date, so how do we do that moving forwards? We've talked about security of data, we understand there are moves to link more genomic data sets both nationally and internationally and that clearly has significant benefits because that brings bigger numbers of patients data together, but opens up potential risks in terms of security, so how do we make sure that the security of that data is as good as it is currently when it's held in one pot in Genomics England Research Library. And just a couple of final concerns that were flagged by panel members, there is some apprehension regarding potential misuse with genomic data by insurance companies; we're given a lot of reassurance about that but there are concerns that could potentially lead to the most vulnerable in society being unable to get affordable cover if they're found to have genomic changes that mean they are at risk of conditions or have certain conditions and there are also concerns about the ethical implications of AI in diagnosis and clinical decision making, you know, AI is obviously a fantastic thing for looking at patterns amongst a big lot of data, but how accurate is it and where does the human come in, in terms of decision making? So those are, I think, the broad concerns from the panel. I don't know if you have any thoughts on those, Rich? Rich: I think the big thing to say is I think having the participant panel there, you said in the middle of that, become collectively quite expert and you recognise that. Having the ability to have these complex nuance conversations and have people share that and speak directly to us about it I think is the biggest thing – lots of those points there made by the panel, I think both things that we have very much in our mind about things that one needs to balance and focus on, and there are also things that we already talk about which is reassuring I think as well, we talk about with the panel. I think one of the things for us as well is sort of being clear on some of the things where there are really clearly well-established red lines, for example, that point on insurance, but that is very clear and part of our role is making sure that that is there and people can feel comfortable in that context to understand that. I think the main thing that I would say is thank you to you Helen, and to all of the panel and all of our participants because I said earlier, this is a team thing and you are all very much part of the team and we would not be able to do our jobs in any way, I wouldn't even say effectively, I would say with the relevance, which is the thing that we drive for, the relevance to have impact for people's lives whose data we hold and will hold in the future. And so thank you for being part of the team. Helen: Thank you. And I think thank you to Genomics England for having the foresight to create the participant panel in the first instance, it was there from the get-go and I think a really great opportunity for all of us to be involved in this, to have our voices heard and listened to, so thank you. We'll wrap up there. Thank you for joining me today and thank you for discussing your appointment as CEO for Genomic England, and your view on what the genomics ecosystem might look like over the next ten years. If you would like to hear more like this, please subscribe to the Behind the Genes, on your favourite podcast app. Thank you for listening. I've been your host, Helen White. This podcast was edited by Bill Griffin at Ventoux Digital, and produced by Naimah Callachand.
Evidence Based Perioperative Medicine (EBPOM) is at the heart of what we do and their annual world conference in London always delivers. TopMedTalk, the broadcasting arm of EBPOM, is there bringing you conversations and adding to the discussions at the conference. Presented by Andy Cumpstey, NIHR clinical lecturer in anaesthesia and intensive care medicine at Southampton University with Joff Lacey, consultant anaesthetist at St George's Hospital NHS Foundation Trust in London.
What value is there in allied health professional research? To consider this question Sophie Chalmers, Hazel Roddam and fellow researchers conducted a systematic review, which explored the value of research engagement specifically by AHPs, and also considered mechanisms which might connect research engagement with healthcare performance. In this podcast Sophie and Hazel discuss their research and its implications.We cover:What is this new research and why it is important?What does it mean for allied health professionals?What does it mean for their organisations?How do AHPs develop their research skills?The launch of the multi professional research capabilities framework.Interviewees:Sophie Chalmers, Speech and Language Therapist & NIHR ARC-GM pre-doctoral fellow Dr Hazel Roddam, FRCSLT, HEE's Lead for the AHP Research & Innovation Strategy for England 2022 Resources:1. Link to paper being discussed The value of allied health professional research engagement on healthcare performance: a systematic reviewS. Chalmers, J. Hill, L. Connell, S. Ackerley, A. Kulkarni & H. Roddam, BMC Health Services Research, volume 23, Article number: 766 (2023) https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-023-09555-9 2. Link to bitesize resources from this paper:Infographic: https://twitter.com/SChalmersSLT/status/1687172202553102336/photo/1 AHPs2mintalks video: https://x.com/SChalmersSLT/status/1684863198434844673?s=20 3. NIHR research capacity building funding streams Information resource for all AHPs https://cahpr.csp.org.uk/news/2024-03-12-new-nihr-research-training-development-career-awards 4. NHS England Multi professional research capabilities framework launched February 2024 https://advanced-practice.hee.nhs.uk/research-framework-launched/?utm_source=Twitter&utm_medium=social&utm_campaign=Orlo5. Related paper‘It depends': what 86 systematic reviews tell us about what strategies to use to support the use of research in clinical practiceAnnette Boaz, Juan Baeza, Alec Fraser & Erik Persson Implementation Science volume 19, Article number: 15 (2024) https://implementationscience.biomedcentral.com/articles/10.1186/s13012-024-01337-z
Dr. Dan Perry, a children's orthopaedist and NIHR research professor from Liverpool, joins the show to discuss his recent research, including numerous ongoing multicenter trials spanning the UK and beyond: SCIENCE, CRAAFT, FORCE, BASIS, ODD SOCKS, to name a few. The lightning round touches on compartment syndrome in ECMO, why pedipods get low online reviews, and more. This episode is sponsored by OrthoFix. Your hosts are Carter Clement from Children's Hospital of New Orleans and Craig Louer from Vanderbilt. Music by A. A. Aalto. References: Joseph et al. Radiological assessment of hip disease in children with cerebral palsy: development of a core measurement set. Bone & Joint Open. Nov 2023. PMID 37909150. Bridges et al. Acute Compartment Syndrome in Pediatric Patients on Extracorporeal Membrane Oxygenation Support. JPO. Dec 2023 Epub. PMID 38084004. Torres-Izquierdo et al. Is There a Role for Isolated Closed Reduction in the Emergency Department Without Fixation for Displaced Proximal Humerus Fractures in Adolescents? JPO. Dec 2023 Epub. PMID 38151963. Martino et al. The Optimal Age for Surgical Management of DDH Differs by Treatment Method. JPO. Nov 2023 Epub. PMID 37970702. Hitchman et al. An Analysis of Negative One-star Patient Reviews and Complaints for Pediatric Orthopaedic Surgeons throughout the United States: A Retrospective Study. JPO. Nov 2023 Epub. PMID 37970712.
Join Philip Mease, Professor at the University of Washington School of Medicine and Director of Rheumatology Research at the Swedish Medical Centre in Seattle, USA, and Laura Coates, an Associate Professor, NIHR clinician scientist and senior clinical research fellow at the Oxford Psoriatic Arthritis Centre, as they discuss two important topics from the world of contemporary PsA treatment. The first of the publications they will be reviewing sought to compare patient characteristics and efficacy and safety of advanced therapies between male and female patients with PsA participating in RCTs. They then go on to discuss a second publication describing malignancies in patients with a variety of rheumatic conditions treated with upadacitinib or active comparators.
In today's episode with Amanda Daley, we're diving into a revolutionary concept that might just change the way you think about staying active: Snacktivity™. Amanda is a Professor of Behavioural Medicine and a Research Professor in Public Health at the NIHR. She is also the Director of the Centre for Lifestyle Medicine and Behaviour (CLiMB). Amanda's work is focused on investigating the effects of lifestyle interventions on health outcomes. She is the chief investigator on several on-going trials that are examining the effectiveness of community and general practice based physical activity and weight management interventions. She works closely with public health organizations and other stakeholders. To learn more about the studies on Snacktivity™ so far, go to: https://www.lboro.ac.uk/research/climb/ and https://www.lboro.ac.uk/research/climb/prevention-treatment-disease/ ************************* ➡️ JOIN OUR FREE 5-DAY CHALLENGE: https://official.purephysique.com/5-day FOLLOW US ON SOCIAL: ➡️ IG: @corriebeth.lipowski | @mike_lipowski | @pure.physique ➡️ YouTube: PURE PHYSIQUE
Join Peter Nash, Professor at the School of Medicine, Griffith University, and Director of the Rheumatology Research Unit on the Sunshine Coast, Australia, Philip Mease, Professor at the University of Washington School of Medicine, and Director of Rheumatology Research at the Swedish Medical Centre in Seattle, USA, as well as Laura Coates, an Associate Professor, NIHR clinician scientist and senior clinical research fellow at the Oxford Psoriatic Arthritis Centre as they discuss two intriguing aspects of the contemporary PsA treatment landscape. The first of the publications relates to the effects of gender on disease characteristics, treatment impact and treatment persistence. The second publication explores the long-term safety profile of guselkumab in the treatment of PsO and PsA.
Georgina Aasgaard Cellist and Music and Health Practitioner Georgina Aasgaard is a Liverpool based Cellist and Music and Health practitioner who has a passion for bringing Music from the concert platform to challenging and more intimate environments. She has 20 years of experience delivering music interventions in a broad range of health and social settings such as hospitals, mental health units, prisons, homes for the elderly as well as community centres for refugees and the homeless. Her practice includes 15-year partnerships with the Royal Liverpool Philharmonic Orchestra, Mersey Care NHS Foundation Trust, Alder Hey NHS Foundation Trust and Live Music Now. She has also aworked for 10 years with DadaFest and Drake Music, engaging with people with disabilities through music making and technology . As a musician in residence, she has led innovative and groundbreaking programmes which include both one to one interaction on intensive care units and group work in mental health units. She has co-created recovery courses, co-produced performances, exploring skills such as improvisation, composition, songwriting, music technology, and including employability opportunities. Her activities have been measured through co-evaluation methods and continuous contact with patients and service users. These collaborations have enabled her to draw on her experiences to create context specific training and mentoring programmes. She is currently developing a toolkit for musicians working in healthcare, informed by her collaborative work over the years and her research activities. Georgina was awarded a Pre-doctoral Local Authority Fellowship by the NIHR, as a Director of Training and Development Research for Live Music Now, working in partnership with the University of Liverpool to investigate the influence of non-clinical music interventions on mental health. She currently works in close collaboration with The Liverpool Centre for Health, Art, Society and Environment (CHASE) at the University of Liverpool aiming to foster critical inquiry, dialogue and creativity to build new knowledge about enabling creative communities through music collaboration and cross-sector partnerships. As part of this collaboration, she has been granted a new Community Innovation Practitioner (CIP) award funded by the AHRC to investigate how collaborations between academics and partners from across different sectors can work to benefit health and wellbeing. Awards and Honorary Fellowship · 05/07/2022: Festival of Learning Awards: Winner of the President's Award. Music and Mental Health Programme at the Life Rooms, Royal Liverpool Philharmonic, Lead musician · 01/02/2021: Liverpool City Region Culture and Creativity Awards: Winner of the Impact Award on Health and Wellbeing Royal Liverpool Philharmonic, Lead Musician · 01/05/2019: Winner of the Merseyside Woman of the Year in the category of Arts, Culture and Media · 01/03/2016: NHS Award in Health and Care - Certificate of Recognition for Commitment to learning in Health and Care · 01/09/2011: University of Liverpool Honorary Fellowship, Music and Wellbeing · 01/09/2010: NHS Positive achievement Award in Mental Health
Join Peter Nash, Professor at the School of Medicine, Griffith University, and Director of the Rheumatology Research Unit on the Sunshine Coast, Australia and Laura Coates, an Associate Professor, NIHR clinician scientist and senior clinical research fellow at the Oxford Psoriatic Arthritis Centre, discussing two intriguing aspects of the contemporary PsA treatment landscape. The first of the publications relates to the safety and efficacy of bimekizumab in bDMARD-naïve patients with PsA through 52 weeks and the second is a publication exploring the real-world safety and efficacy of upadacitinib in patients with PsA and an inadequate response to csDMARDs or bDMARDs.
Last week Adam Smith attended the 33rd Alzheimer Europe Conference in Helsinki, Finland. In this podcast Adam and his guests bring you highlights from event, sharing news and their best bits from the hundreds of posters and talks delivered. -- This week's guests are: Dr Victoria Shepherd, Senior Research Fello and Nurse from Cardiff University. Victoria has a special interest in research involving under-served populations with a particular focus on people with cognitive impairment. She leads a programme of methodological research exploring the ethical, legal and practical issues around research involving adults who lack capacity consent. Dr Monica Leverton, Postdoctoral Researcher at King's College London. Monica is based within the NIHR policy institute in health and social care workforce. Her areas of interest include care for people living with dementia and the social care workforce who support them. She currently leads a project developing the role of dementia champions in homecare. Dr Danielle Jones, Associate Professor in Dementia Studies at University of Bradford. Danielle is a medical sociologist with expertise in Conversation Analysis. She has applied this method to medical communication to investigate how dementia is assessed within memory clinics in the UK. Her current project explores how dementia risk is communicated in medical interaction within both primary and secondary care. Caroline Bartle, Dementia Project Specialist at Ryman Health Care in New Zealand. Caroline has 30 years in dementia care – carer to social worker to CEO – leading workforce development in dementia care. Founder of 3 Spirit Training Consultancy who has trained over 100,000 carers and developed over 500 different health and social care programmes. -- This year's conference was held under the motto “New opportunities in dementia care, policy and research”. As in previous years, this conference is one of the few in the diary that has a ‘family feel; providing great networking opportunities and bringing together people living with dementia, carers, volunteers and staff of European Alzheimer associations, policy makers, health and social care professionals, researchers and academics. This year had a record turn-out of 1,000 in-person attendees, enjoying a programme covering a broad range of topics, from fundamental science to care, diagnosis, policies, interventions, treatments and more (and for the first-time sessions led and decided by their European Working Group of People with Dementia (EWGPWD) and European Dementia Carers Working Group (EDCWG)). -- Links discussed in the show: Conference Website - https://bit.ly/3seI5g4 Conference hashtag - https://bit.ly/45R0RYX EU-Fingers - https://eufingers.com/ INTERDEM - https://interdem.org/ -- You can find out more about our panellists, and their work on our website. There you will also find a full transcript: https://www.dementiaresearcher.nihr.ac.uk -- Prefer to listen rather than watch? Check out the audio version of this podcast: https://podfollow.com/dementia-researcher -- The views and opinions expressed by guests in this podcast represent those of the guests and do not necessarily reflect those of Dementia Researcher or its supporters.
Peter Nash, Professor at the School of Medicine, Griffith University, and Director of the Rheumatology Research Unit on the Sunshine Coast, Australia, is joined by Laura Coates, an Associate Professor, NIHR clinician scientist and senior clinical research fellow at the Oxford Psoriatic Arthritis Centre as well as Doctor Frank Behrens, Medical director at Goethe-University. The papers covered in this topical discussion highlight two interesting areas of the modern PsA therapeutic landscape. The first of the publications discusses the safety and efficacy of upadacitinib in the treatment of patients with PsA and an inadequate response to bDMARDs through a three-year study. The second, explores an analysis of the real-world safety profile of tofacitinib in the treatment of patients with PsA. If you would like to read more about the topics discussed, head over to cytokinesignalling.com, where you'll find detailed summary slides of each of the papers.
Join Peter Nash, Professor at the School of Medicine, Griffith University, and Director of the Rheumatology Research Unit on the Sunshine Coast, Australia, Laura Coates, an Associate Professor, NIHR clinician scientist and senior clinical research fellow at the Oxford Psoriatic Arthritis Centre and Doctor Frank Behrens, Medical director at Goethe-University, as they discuss two interesting areas of the modern PsA therapeutic landscape. The first of the publications discussed pertains to the use of secukinumab in oligoarticular PsA. We will then go on to expand upon the latest in the evolving story begun by ORAL Surveillance, as we discuss the latest meta-analysis of the relationship between JAK inhibition and malignancies.
Professor Peter Nash from the Griffith University in Brisbane, is joined by Professor Laura Coates a NIHR clinician scientist and senior clinical research fellow at the Oxford Psoriatic Arthritis Centre, discussing her recent paper 'Secukinumab improves physical function and quality of life and inhibits structural damage in patients with PsA with sustained remission or low disease activity: results from the 2-year phase 3 FUTURE 5 study'.
In this episode of the podcast, I had the pleasure of talking to Ofran Al-mossawi about her inspiring career journey. If you are interested in pursuing a pharmacy career in research or you've thought about it in the past but you're not sure where to start, then this is perfect episode for you to tune into! Ofran has spent most of her pharmacy career in a hospital setting and has focused her time between paediatrics, critical care, and clinical trials. At the time of this recording, she was writing the finishing touches to her thesis in order to complete her PhD. An exciting achievement for her and one we can celebrate with her as this episode launches! Ofran and I spent most of our time talking about research in pharmacy. We are so fortunate that she is a current National Institute of Health & Care Research (NIHR) Docotoral Research Fellow with the UCL GOS Institute of Child Health. She gives us insight into: Why Pharmacists should get involved with research The application process for a fellowship with the NIHR and the benefits of working with them. Why you would choose to do a fellowship with NIHR and at what point in your career would you consider it How to best prepare for a fellowship application as it is a very competitive process, including the steps you should take from early in your career to prepare you for success The pros and cons of a research career, including the challenges of balancing research with clinical work The value in mentorship and building a strong support network as a researcher Overall, this episode was both educational and motivating, and I highly recommend it to anyone interested in pursuing a career in research or looking to find their true passion in life. So be sure to give it a listen and get ready to be inspired! PARTNERSHIPS: The Naked Pharmacy is offering my podcast listeners a 20% discount on all their products. Use discount code PD20 at checkout to receive the offer. Sunjay Vyas, my husband and videographer, is offering my podcast listeners a one-off 20% discount for videography services. Maybe you want to launch a podcast. Maybe you want to turn a hobby into something more. Or maybe you have a creative project to share with the world. Whatever it is, the way you tell your story online can make all the difference. Book a call with him using the link above! SUPPORT THE PODCAST: As I continue to grow and evolve this podcast, I am committed to bringing you inspiring and empowering content. But in order to do that, I need your support. I've set up a Buy Me a Coffee donation page where you have the opportunity donate a coffee (£5). You'll be helping us invest in the infrastructure, equipment, and team needed to take Pharmacist Diaries to the next level. With your help, we can continue to inspire and empower pharmacists around the world, and create a community that supports and uplifts one another. FOLLOW OFRAN: LinkedIn: Ofran Almossawi Follow me on My Website, YouTube, Instagram, Facebook, LinkedIn, and/or Twitter. Feel free to subscribe to the podcast on your favourite podcast platform so you can be notified when a new episode is released or leave a review on apple podcasts. If you have any suggestions for guests you want me to talk to or if you'd like to come on yourself, please feel free to contact me via social media, or email at info@pharmacistdiaries.com.
This week we interview John Milad. John has 25 years of experience as a start-up executive, venture investor, and banker specializing in healthcare innovation across the UK, Europe, and the US. He had 10 years of life sciences venture experience at a family office, Atlas Venture, NBGI Venture and Downing. Notable exits include Symetis, ACT/EPIX, BoneSupport and Medcast/WebMD. John is a Co-founder of Quanta Dialysis Technologies, which I led as CEO for 8 years. Notable outcomes include creating an award-winning, disruptive portable dialysis system; raising nearly $400m in funding; commercially launching in UK and US; and establishing trans-Atlantic commercial operations. For another two years, he served as an executive at Nitec Pharma, which was ultimately sold to Horizon Therapeutics. John has held multiple board positions across the sector. He has been an advisor to the NIHR i4i programme. Mentor at the Enterprise Hub of the Royal Academy of Engineering. He has been recognized in the Sunday Times Maserati List of the UK's Top 100 “Game Changing Innovators and Entrepreneurs”; Winner of the 2022 MacRobert Award from the Royal Academy of Engineering for outstanding engineering innovation.
Inspiring Stories 030 - Dr Kasia Zmarzly - Client Story Subscribe to the Women In STEM Career & Confidence Podcast on your favourite platform and stay tuned. Today on Women in STEM Career & Confidence I'm joined by Dr Kasia Zmarzly, Programme Manager at LGC supporting management of NIHR and NHS England funding calls. During this episode Kasia talks about her coaching journey: And how she learnt that leadership starts with self-leadership. Putting yourself first is not selfish, it's essential for your success. How Kasia felt capable but it wasn't translating to confidence, until we stopped the old patterns of behaviours from repeating, using trigger tracking and by unpicking bonding patterns (our default position in relationships). How Kasia has had a big shift in her approach to work, becoming an advocate for work-life balance and that means being able to speak up and say the uncomfortable things. You are going to love Kasia, so let's dig in. Resources: Join hundreds of Scientists and Professional Women in Breakthrough Unleashed on Facebook: https://www.facebook.com/groups/breakthroughunleashed/ Visit my Website: https://hannahnikeroberts.com/ Connect with me on LinkedIn: https://www.linkedin.com/in/hannahrobertscoaching/ Follow me on Twitter: https://twitter.com/HannahNikeR Follow me on Facebook: https://www.facebook.com/drhannahroberts Connect with me on Instagram: https://www.instagram.com/drhannahroberts/ Download Your FREE Guide: https://drhannahroberts.lpages.co/high-achievers-anxiety
The way labour and birth is depicted on film and TV has bugged me for some years and, I think, does little to make women feel empowered. This episode isn't about how or where to give birth - that's your choice - but we do talk about what happens in an uncomplicated vaginal birth.Amy is the Lead Research Midwife in the Department of Obstetrics and Gynaecology at the university of Cambridge, and study coordinator for the Pregnancy Outcome Prediction Study 2 (POPS2). She's previously worked as a senior research midwife in the NHS, and as the Eastern Regions Champion Research Midwife for the NIHR. Amy received a Chief Midwifery Officer Silver Award in 2020 for her work in reproductive health and childbirth research.Amy has also been an independent midwife, which is when I met her as she delivered my second child. Birthrights is a great charity that helps you understand your rights when giving birth in the UK.https://www.birthrights.org.ukMake a one off donation: https://supporter.acast.com/conversations-with-annalisa-barbieriWant this podcast ad free: head over to my Patreon https://www.patreon.com/annalisabarbieri Follow us: Twitter: @AnnalisaB, Instagram: @pocketannalisaSupport this show http://supporter.acast.com/conversations-with-annalisa-barbieri. Hosted on Acast. See acast.com/privacy for more information.
In this podcast Speech and Language Therapist Dr Anna Volkmer talks with a Nurse and an Occupational Therapist discussing their career pathways from the NHS into academia, and then back to put their training to use on the front-line in the NHS. -- This week's guests are: Dr Emily Jones, Senior Matron & Lead Dementia Nurse at Portsmouth Hospitals University NHS Trust. Her research focussed on the care of people with dementia in acute hospital settings and how the work system influences nursing staff capacity for high quality relationship centred dementia care. Dr Naomi Gallant, Occupational Therapist Team Lead at King's College Hospital NHS Foundation Trust. Naomi's PhD focussed on mealtimes and enabling independence and quality of life for people with dementia. Full biographies on all our guests and a transcript can be found on our website https://www.dementiaresearcher.nihr.ac.uk -- With a number of clinical academic training funding calls open this month (NIHR, Alzheimer's Society, Alzheimer's Association, Wellcome Trust etc), we shine a spotlight on the potential for healthcare professionals to take time away and pursue further training, undertaking a MSc, PhD and clinical academic position. Highlighting that the doors this can open to enable you to return to clinical practice or continue as a clinical academic. A clinical academic is a qualified healthcare professional who also works in academia, typically in research, teaching, or both. They balance their time between treating patients, conducting research that contributes to the scientific understanding of their field, and training the next generation of clinicians. Every clinical academic post is different, depending on the specialism, experience, and interests of the individual. Most clinical academics will work for two entities – the NHS and a university – and split their time variably between the two. Many find that their dual role gives them greater career flexibility, and an exciting and varied workload. There is a huge array of clinical academic careers on offer across a diverse range of specialties, making every clinical academic post truly unique. However…. Even if academia isn't your passion, you can put your academic training to great use in the NHS, as our brilliant host and guests demonstrate. -- Like what you hear? Please review, like, and share our podcast - and don't forget to subscribe to ensure you never miss an episode – and if you prefer to watch rather than listen, you'll find a video version of this podcast with full captions on our YouTube Channel – http://www.youtube.com/dementiaresearcher -- This podcast is brought to you by University College London / UCLH NIHR Biomedical Research Centre in association with Alzheimer's Association, Alzheimer's Research UK, Alzheimer's Society and Race Against Dementia who we thank for their ongoing support.
In the clinical work I do in urgent care pediatrics, most of the kids I see come in with an injury or an infection – a fever, cough, runny nose, GI symptoms. That means that – as is the case for many pediatricians – so much of what I do revolves around diagnosing infections and counseling families about them. It's often routine work, but it has its challenges. The most difficult thing, I think, is seeing parents who are desperate for relief, exhausted from a few sleepless nights with a sick, crying child, and having to tell them that their child isn't in danger, that nothing more needs to be done, and that this too, shall pass on its own. That disconnect between the distress – which I too have felt as a parent – and the routine nature of these illnesses, is tricky to navigate.In the last few months, and in particular this past Fall, it seems all of society and much of the news cycle in Canada and the US turned its attention to childhood infections. With an extraordinary wave of RSV and then influenza, pediatric emergency rooms and hospitals were overwhelmed with sick patients. Coming in the midst of the Covid pandemic, this wave of viral infections had health systems reeling. In Canada, shortages of medications like common antibiotics and pediatric formulations of ibuprofen and acetaminophen compounded the sense of chaos and of a breakdown in health services. All that has now passed, but I wanted to revisit those events and talk a little about what happened. My next guest is someone I've come to trust on this subject for his abilities as a communicator. Alasdair Munro is a senior clinical research fellow in pediatric infectious diseases at the UK National Institute for Health and Care Research (NIHR) in Southampton, England and a medical doctor. He's currently a senior trainee in pediatrics working in pediatric emergency medicine. During the pandemic he led the live evidence review of COVID-19 in children with the Royal College of Paediatrics and Child Health while running a number of different COVID-19 vaccine clinical trials. He also sat on The Lancet commission on COVID-19 (safe work, travel and schools) as well as the NIHR working group for the study of transmission of COVID-19 in schools. Alasdair's gained a large Twitter following, and his substack newsletter, the Munro Report, is widely shared. Whenever I read Alasdair, I feel he captures the way I and most pediatricians I know think, about covid, other infections, and pediatrics more broadly. We cover all of that in our conversation, and I hope you enjoy it as much as I did. Although I never provide medical advice on this show, since this episode is about my area of clinical expertise, I wanted to make it extra clear that nothing in the following discussion should be construed as direct medical advice to you or a child you know. For those questions, you should see a health care provider yourself. And now, here's my conversation with Alasdair Munro.***Links:Alasdair's newsletterAlasdair's Twitter: @apsmunroDon't Forget the Bubbles (pediatric evidence review site)***Recorded February 9th, 2022Music: Mr. SmithArt: Jeff Landman***www.practicingpod.comTwitter: @practicingpodInstagram: practicingpodLinkedIn: Practicing Podcast
This piece looks at how The National Institute for Health and Care Research (NIHR) is taking an active role in perioperative medicine and surgery; addressing unanswered questions and ensuring research is both inclusive and extensive in the UK health industry. How have the NIHR moved medicine forward and what lessons can be learned from the recent COVID-19 crisis? Presented by Lucy Chappell, Professor, Chief Scientific Adviser to the Department of Health and Social Care and Chief Executive of the National Institute for Health and Care Research (NIHR) with contributions and questions from the audience and panel including; Mike Grocott, Professor of Anaesthesia and Critical Care in Southampton and Director of the NIHR Biomedical Research Center in Southampton, Guy Ludbrook, Professor of Anaesthesia at the University of Adelaide and Royal Adelaide Hospital and Ramani Moonesinghe OBE, Professor of Perioperative Medicine at University College London and a Consultant in Anaesthetics and Critical Care Medicine at UCL Hospitals.
We recorded this episode live at the 2022 Canadian Surgical Forum in Toronto, Canada. We managed to catch up with the globetrotting colorectal surgeon, Dr. Neil Smart, right after his in-depth session at CSF on parastomal hernias. Dr. Smart is based out of Exeter, UK and is the current Editor-in-Chief of the journal Colorectal Disease. In this masterclass episode we delved deep into the management of parastomal hernias, covering stoma formation itself to the surgical management of this complex disease. Be sure to check out the links to Dr. Smart's study in the show notes. Neil Smart Twitter handle: @Neil_J_Smart Links: 1. Cohort study to Investigate the prevention of Parastomal Hernia (CIPHER) study: Cohort study to Investigate the prevention of Parastomal Hernia (CIPHER) 2. Twitter link to CIPHER study: https://twitter.com/TheCIPHERStudy?s=20&t=ECwhYqAUrf43WN9h0SuFzw 3. PROPHER study: https://www.escp.eu.com/research/cohort-studies/2019-patient-reported-outcomes-after-parastomal-hernia-treatment 4. Twitter link to PROPHER study: https://www.escp.eu.com/research/cohort-studies/2019-patient-reported-outcomes-after-parastomal-hernia-treatment Bio (from https://www.europeanherniasociety.eu/new-ehs-wing-members): Neil Smart is an academic surgeon at the Royal Devon & Exeter hospital & Honorary Associate Professor at the University of Exeter Medical School. His clinical practice includes subspecialty interests in rectal cancer, hernia prophylaxis, incisional hernia repair / complex abdominal wall reconstruction and parastomal & perineal hernias. Neil has been involved in hernia research for over 15 years, leading a range of study designs from clinical to translational studies, and participating in RCTs and qualitative research. Most notably: • generated over £1.3 million total in research funds directed primarily at hernia research. • Chief Investigator of the NIHR funded CIPHER study on parastomal hernia. • translational work into mesh characteristics. • co-applicant of research onto parastomal hernia repair, incisional hernia outcomes reporting and the impact of Covid on hernia surgery. Neil has published extensively in the field of hernia surgery and mesh, including 3 hernia related guidelines for EHS & ACPGBI on parastomal & perineal hernias. He has been a specialty advisor to NICE for mesh & stomas since 2018. Neil is Editor in Chief of the journal Colorectal Disease and has provided peer review for over 20 other journals. He has provided peer review for grant awarding bodies including NIHR / MRC / RCUK / AMRC.
Episode 58 of the Long Covid Podcast is a chat with Fiona Jones, Co-lead of the LISTEN trial which is funded by the NIHR and is currently recruiting in parts of England & Wales.We chat about the 2 parts of the trial, how it's been set up and the benefit of their patient involvement both for the researchers & the the patients themselves.Home (listentrial.co.uk)What do people with long Covid think of LISTEN? (listentrial.co.uk)~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~The Long Covid Podcast is self-produced & self funded. If you enjoy what you hear and are able to, please Buy me a coffee or purchase a mug to help cover costs.Share the podcast, website & blog: www.LongCovidPodcast.comFacebook @LongCovidPodcastInstagram & Twitter @LongCovidPodFacebook Support GroupSubscribe to mailing listPlease get in touch with feedback and suggestions or just how you're doing - I'd love to hear from you! You can get in touch via the social media links or at LongCovidPodcast@gmail.com Support the show
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