Podcasts about patientslikeme

Long before hashtags and apps, patient mentoring thrived quietly in community rooms and support circles—offering emotional validation and practical guidance where clinical care left off. In this episode, Chris Boyer and Reed Smith trace the evolution of peer-to-peer support in healthcare, and how digital platforms have transformed it from local to limitless. They dive into: The History of Peer Mentoring – From 1970s cancer groups to HIV/AIDS buddy programs, peer support has long filled the gaps in clinical care through empathy, shared experience, and trust. The Digital Shift – How platforms like PatientsLikeMe, Reddit, Inspire, and even TikTok created scalable, searchable communities for patients—especially those navigating chronic or stigmatized conditions. Why Health Systems Lag Behind – Compliance fears, cultural resistance, and underinvestment have limited provider involvement, even as patients build robust peer networks on their own. Opportunities for Integration – Peer support could enhance onboarding, post-discharge care, chronic condition engagement, and even brand trust—if health systems partner, not compete. Later in the episode, they're joined by Paul Hoffman, founder of InTandem Health, who shares insights on launching digital peer mentoring platforms—from clinical impact and marketing value to the surprising role peer programs can play in fundraising and health system transformation. In 2025, the most powerful engagement may not be provider-to-patient—but patient-to-patient. Mentions from the Show:  “Peer support/peer provided services: Underlying processes, benefits, and critical ingredients.” Psychiatric Rehabilitation Journal. Effectiveness of Peer Support on Quality of Life and Anxiety in Breast Cancer Patients: A Systematic Review and Meta-Analysis Impact of the 2nd Story Peer Respite Program on Use of Inpatient and Emergency Services Peer-Supported Self-Management of Chronic Disease: A Toolkit “Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another's Data” Online social networking by patients with diabetes: a qualitative evaluation of communication with Facebook. Paul Hoffman on LinkedIn InTandemHealth Reed Smith on LinkedIn Chris Boyer on LinkedIn Chris Boyer website Chris Boyer on BlueSky Reed Smith on BlueSky Learn more about your ad choices. Visit megaphone.fm/adchoices

In this episode, Vera spoke with Morgan Hanger, Executive Director of the Clinical Trials Transformation Initiative (CTTI). CTTI is a public-private partnership dedicated to improving the quality and efficiency of clinical trials, aiming to transform the industry by 2030. Hanger shares her career journey, from her roles at PatientsLikeMe and Memorial Sloan Kettering Cancer Center, to leading CTTI. She explains how her patient-centered focus has shaped CTTI's approach to its Transforming Trials 2030 initiative. Hanger addresses the major challenges in clinical trials today, including regulatory complexities and the need for better data transparency. She explains how CTTI is tackling these issues through collaboration and innovative trial designs, like decentralized and adaptive trials, which aim to improve efficiency and inclusivity. Hanger encourages new clinical trial professionals to embrace innovation and stay patient-focused. She hopes her work at CTTI will influence the development of a clinical trial system that is more efficient, inclusive and better aligned with patient needs. Tune in to learn how CTTI is leading efforts to reshape clinical trials. For more life science and medical device content, visit the Xtalks Vitals homepage. https://xtalks.com/vitals/ Follow Us on Social Media Twitter: https://twitter.com/Xtalks Instagram: https://www.instagram.com/xtalks/ Facebook: https://www.facebook.com/Xtalks.Webinars/ LinkedIn: https://www.linkedin.com/company/xtalks-webconferences YouTube: https://www.youtube.com/c/XtalksWebinars/featured

Minter Dialogue with John Hervey John Hervey started out his career working as a research analyst at prestigious banks, before becoming global head of Reuters Insights. He then made a career switch and was appointed CEO of Cota Healthcare, COO at Inspire before his latest venture, as CEO of PatientsLikeMe, the world's largest personalized health network, boasting 830,000+ people who are living with 2,900 conditions that have generated more than 43 million data points, creating an unprecedented source of real-world evidence and opportunities for continuous learning. In this conversation, we discuss his career and pivot, his experience as the CEO of publicly traded company and now piloting this fascinating initiative. We look at how the role of a leader has evolved over the years, his view on risk taking, and creating a successful culture.  If you've got comments or questions you'd like to see answered, send your email or audio file to nminterdial@gmail.com; or you can find the show notes and comment on minterdial.com. If you liked the podcast, please take a moment to go over to Apple Podcasts or your favourite podcast channel, to rate/review the show. Otherwise, you can find me @mdial on Twitter.

A patient's perspective can ensure safe medical care and lead to new insights that traditional research may overlook. But how do we best harness that perspective to improve patient outcomes?This episode is part of the Uppsala Reports Long Reads series – the most topical stories from UMC's pharmacovigilance news site, brought to you in audio format. Find the original article here.After the read, we speak to Manal Younus, who authored the article, to learn more about patient engagement and its benefits for medicines safety.Tune in to find out:How regulators and healthcare professionals can effectively engage patientsHow patients can get involved in drug safety monitoringWhat the pharmacovigilance community learned from the valproate caseWant to know more?In 2022, the Council for International Organizations of Medical Sciences (CIOMS) published a comprehensive report on patient involvement in the development, regulation and safe use of medicines. They also recorded a webinar to summarise the report's main conclusions.The International Society of Pharmacovigilance (ISoP) runs a patient engagement group to advance patient involvement in the safety monitoring of medicines.The Valproate toolkit, developed by the UK's Medicines and Healthcare Products Regulatory Agency (MHRA), supports healthcare professionals in advising women of childbearing age about the risks and benefits of valproate therapy.PatientsLikeMe is a digital platform where patients can share personal health stories, connect to peers, and learn about different conditions and treatments.For more on patient engagement and communication, check out these episodes from the Drug Safety Matters archive:Why we should listen to patientsThe challenge of rare diseasesHow to talk about risksFinally, don't forget to ­subscribe to the monthly Uppsala Reports newsletter for free regular updates from the world of pharmacovigilance.Join the conversation on social mediaFollow us on Twitter, Facebook or LinkedIn and share your thoughts about the show with the hashtag #DrugSafetyMatters.Got a story to share?We're always looking for new content and interesting people to interview. If you have a great idea for a show, get in touch!About UMCRead more about Uppsala Monitoring Centre and how we work to advance medicines safety.

Dr. Renée Deehan, Ph.D. is the VP of Science & Artificial Intelligence at InsideTracker ( https://www.insidetracker.com/ ), and leads a science team that builds and mines the world's largest data set of blood, DNA, fitness tracking and phenotypic data from healthy people, creating evidence-based solutions that are simple, clear, and actionable. Dr. Deehan has spent her career working in the precision medicine and personalized nutrition domains, previously serving as the VP of Computational Biology & Translational Informatics at QuartzBio and as the VP of Biology and Bioinformatics at PatientsLikeMe, the world's largest integrated community, health management, and real-world data platform. At PatientsLikeMe, Dr. Deehan was responsible for data and knowledge engineering, AI/machine-learning, and translational biology functions that drove infrastructure and consumer & business product development. She was also the Principal Investigator for the DigitalMe Ignite program, which collected longitudinal blood and patient-generated health data from over 5,000 at-home site visits from over 2,000 participants and was able to generate over 2 Million data points from the DigitalMe program. Dr. Deehan also designed and cross-functionally implemented the first generation of an “advanced research platform”, capable of integrating survey and omics data for biomarker analysis, including ensemble-based machine-learning pipelines. Additionally, they developed an outsourced pipeline to support their wet-lab omics needs (DNA/RNAseq, proteomics, immune sequencing/antibody repertoire analysis, metabolomics, methylomics). Dr. Deehan has a Ph.D in Molecular and Cell Biology from University of California, Berkeley and a BSE in Bioengineering from University of Pennsylvania.

Trisha Bordelon is a patient advocate and active participant with the PatientsLikeMe organization. Trisha talks about her journey from when the doctors first diagnosed multiple sclerosis through her attempts to find an effective medication.  Along the way, she discovered some genetic and environmental factors in developing this disease.  She also found a community of patients and advocates on PatientsLikeMe, where she found guidance and where she shares resources and advocacy support. Trisha explains, "I found PatientsLikeMe just by surfing the internet, and I didn't want somebody else to go through what I went through when I was first diagnosed. My doctor, when I was diagnosed with MS, handed me two brochures. One was for Copaxone, and the other one was for, I believe, Avonex. And he said, "Take these home, take a look at them, come back next week, and we'll decide which medicine you're going to start on." I didn't know anything about MS, in my mind's eye, since I had a relative that had it, I'm thinking, "Oh my gosh, I'm going to end up in a wheelchair within six months. I won't be to work anymore. My life as I know it is over." I want to spare somebody else going through that agony." "I stayed off work from 2017 to 2021 and then went back to work full-time for one of the hospitals. They were so short-staffed and could not get enough people that they were reaching out to people that might have a disability or might have a problem. I did not try to hide my MS from them, but I also didn't volunteer it. I put down that I had been formally on disability, and I told my boss that I did have some limitations, but no one ever asked, so I did not disclose them." @PatientsLikeMe  #MultipleSclerosis #MS #ChronicKidneyDisease #PatientAdvocacy #ChronicIllness PatientsLikeMe.com Listen to the podcast here  

Trisha Bordelon is a patient advocate and active participant with the PatientsLikeMe organization. Trisha talks about her journey from when the doctors first diagnosed multiple sclerosis through her attempts to find an effective medication.  Along the way, she discovered some genetic and environmental factors in developing this disease.  She also found a community of patients and advocates on PatientsLikeMe, where she found guidance and where she shares resources and advocacy support. Trisha explains, "I found PatientsLikeMe just by surfing the internet, and I didn't want somebody else to go through what I went through when I was first diagnosed. My doctor, when I was diagnosed with MS, handed me two brochures. One was for Copaxone, and the other one was for, I believe, Avonex. And he said, "Take these home, take a look at them, come back next week, and we'll decide which medicine you're going to start on." I didn't know anything about MS, in my mind's eye, since I had a relative that had it, I'm thinking, "Oh my gosh, I'm going to end up in a wheelchair within six months. I won't be to work anymore. My life as I know it is over." I want to spare somebody else going through that agony." "I stayed off work from 2017 to 2021 and then went back to work full-time for one of the hospitals. They were so short-staffed and could not get enough people that they were reaching out to people that might have a disability or might have a problem. I did not try to hide my MS from them, but I also didn't volunteer it. I put down that I had been formally on disability, and I told my boss that I did have some limitations, but no one ever asked, so I did not disclose them." @PatientsLikeMe  #MultipleSclerosis #MS #ChronicKidneyDisease #PatientAdvocacy #ChronicIllness PatientsLikeMe.com Download the transcript here  

Again and again, we learn the secret to stroke recovery is repetition. It's about doing the same movement or behavior again and again -- tens of thousands of times. In a typical session with an OT or PT, a patient might do the same exercise 30-60 times, which is a good start. But what if a therapist could crank that up to 1,000 reps an hour, or one every four seconds? Now you've got some interesting possibilities for recovery. Bionik, Inc makes devices and software that do just that. This week I talk with CEO Rich Russo about the InMotion Hand and InMotion Arm devices and how they work in conjunction with a therapist to help patients recover. Listen to the conversation here or in your favorite podcast app. If you don't see the media player below, visit http://strokecast.com/Bionik   Click here for a machine-generated transcript Who is Rich Russo? From the Bionik website: Mr. Russo Jr. has over 15 years of finance and accounting leadership experience and is a Certified Public Accountant. From March 2017 through November 2020, Mr. Russo was the Vice President of Finance and United States Chief Financial Officer, of IcarbonX, a privately held digital health management company specialized in artificial intelligence and health data, and a predecessor PatientsLikeMe. While there, he was responsible for, among other things, the merger of three companies, fundraising, and the ultimate dissolution of certain affiliated companies. From 2007-2016, Mr. Russo held various key leadership roles for Nasdaq-listed companies in life sciences, pharmaceutical and medical device industries. From September 2015 to October 2016, he served as Corporate Controller for Pieris Pharmaceuticals, Inc., a clinical stage biotechnology company, and prior to that, he had roles at Juniper Pharmaceuticals, a woman's health company focused on developing therapeutics, and Cynosure, a medical device company focused on aesthetic treatment systems. In each of these roles, Mr. Russo was responsible for all finance activities and SEC reporting, including partnering closely with management to ensure effective and efficient financial procedures throughout the organizations. Mr. Russo started his career in 2005, where he served as an auditor at Pricewaterhouse Coopers in the assurance group. Mr. Russo is a graduate of Bridgewater State University in Bridgewater, MA, where he graduated from a dual degree program, receiving his Bachelor of Science in Accounting and his Masters in Management and Accounting. Other Inpatient Solutions The Bionik system is one for hospitals and rehab units. The rapid reps help in partnership with the rehab professional. In that respect, it's similar to devices from Restorative Therapies. I talked with the team at Restorative Therapies in episode 92. You can find that episode here.  The key difference is that Restorative Therapies uses Functional Electric Stimulation (or FES) to activate a patients muscles. The Bionik solutions provide physical assistance to help the patient complete motions. They are different ways to stimulate the brain, increase repetitions, and drive the neuroplasticity that is so key to recovery. They are also both intended for use in a hospital or rehab facility with the help of a trained therapist. The other devices I talk about often, like those from sponsor Motus Nova and previous guests with Neofect and Racoon Recovery are for at home use, as a supplement to therapy provided at a medical facility, or as an alternative when those services are not available, for whatever reason. You can learn more about those devices by clicking the links on their names above or from the link table at the bottom of this post. The point of all these solutions is the same -- drive patient recovery through increased movement and repetitions to neureoplastically teach to brain how to access that limb once again. Hack of the Week Wear comfy socks. It's such a simple thing, but the right socks can make a big difference in how you feel. The right socks can wrap your feet well and wick away perspiration. They can protect your foot from rubbing against an AFO or the heel of your shoe. The wrong socks will keep you too hot or too cold. The wrong size will leave you with an uncomfortable wrinkle you walk on all day. If they're too slippery, you've got an additional safety hazard to contend with. The hospital socks they gave me in the hospital were terrible. The had the no slip dots, which was great, but they kept falling down and rotating around my foot. Part if it was they were likely the cheapest that met minimum standards. The other part is that I have large feet for my height (size 12). So my partner ordered me better hospital socks from Amazon,* which helped. For air travel after stroke, I have made a change to my wardrobe. I now wear knee-high compression socks.* They do a good job of preventing swelling in my feet and legs during long flights. And that helps to prevent DVT or deep vein thrombosis, which is where a clot forms in the legs and causes problems there, or breaks loose and lodges elsewhere in the body. That's how Ted Baxter had his stroke. I talked with Ted back in Episode 34. Relatively speaking, good socks are still fairly cheap. Try different ones until you find the socks that are best for your feet and life style. Good socks are worth it. Links Where do we go from here? Learn more about the work Bionik does at https://www.bioniklabs.com/ Share this episode with someone you know by giving them the link http://Strokecast.com/Bionik Subscribe to the Strokecast newsletter at http://strokecast.com/news Don't get best…get better.

Join Dr. Gretchen this week as she chats with Cathy Chester, a true icon & advocator in the MS community. In this episode Cathy shares her insights into how far the knowledge & treatment of MS has come since her own diagnosis, and how she has adapted along with way. Diagnosed with multiple sclerosis in 1986 Cathy has been advocating for the MS community since then, prior to the internet or any approved MS medications. She is a certified health advocate and patient leader and created an award-winning blog, An Empowered Spirit to empower, inspire, and educate the MS community. Cathy was a regular contributor for several MS and health websites and has served as a consultant on patient panels for many pharmaceutical and health companies. Her unique story has been featured in industry newsletters and magazines that include Katie Couric's Wakeup Call, Reader's Digest, Health.com, and Woman's Day, and her writing has appeared in various media outlets that include The Huffington Post, National Multiple Sclerosis Society, Multiple Sclerosis Association of America, Everyday Health, PatientsLikeMe, BetterAfter50, Erma Bombeck Writers' Workshop, The Mighty and Women at Woodstock. Cathy has been featured in several videos and on the radio for PBS, Harvard Radio, Health.com, The Consortium of Multiple Sclerosis Centers, Touch Medical Media, Healthline, and WHOA! Network. Among other awards she's received she's proudest to be awarded the Lifetime Achievement Award from WEGO Health. Find "An Empowered Spirit" (Cathy's Award Winning Blog) at AnEmpoweredSpirit.com Additional Resources: https://www.doctorgretchenhawley.com/insider Reach out to Me: Gretchen@DoctorGretchenHawley.com Website: www.MSingLink.com Social: ★ Facebook: https://www.facebook.com/groups/mswellness ★ Instagram: https://www.instagram.com/doctor.gretchen ★ YouTube: https://www.youtube.com/c/doctorgretchenhawley?sub_confirmation=1 → Game Changers Course: https://www.doctorgretchenhawley.com/GameChangersCourse → Total Core Program: https://www.doctorgretchenhawley.com/TotalCoreProgram → The MSing Link: https://www.doctorgretchenhawley.com/TheMSingLink

The last two years have been driving many discussions of the need for change in the pharmaceutical industry, particularly in the clinical trial arena. Discussions have not always led to actions, however. Hi, I'm Tom Rhoads, CEO of Spencer Health Solutions. As we look towards 2022, I believe we will record this as a year of make it so. The time for moving on from debate is here, as patients are demanding action and forward momentum on today's episode of People Always, Patients Sometimes, our host Janet Kennedy has a conversation with the new executive director of the Clinical Trials Transformation Initiative, Sally Okun. Sally brings a unique and essential perspective to CTTI, as a former nurse and VP of Patients Like Me. They have a detailed discussion of the Transforming Trials 2030 initiative, one that Spencer Health Solutions is 100% behind. I hope you enjoy this episode of People Always, Patients Sometimes.   Janet Kennedy: (00:59) It's very exciting for me to have today's guest. Sally Okun is now the executive director of the Clinical Trials Transformation Initiative. The last time I spoke with her was on the Get Social Health podcast, where she was the vice president of Patients Like Me. So interesting that we're going to have another conversation, but in a totally different role, and yet, still very patient centric. So please join me in welcoming Sally Okun to the People Always, Patients Sometimes podcast. Sally, I'm so glad to have you here. I know it's been very, very odd over the past few years in working and collaborating and life transitions, but we had an opportunity to talk to your predecessor, Pamela Tenaerts, who was the executive director of the Clinical Trials Transformation Initiative. We spoke to her pre-COVID. So now we're in the middle and maybe hopefully heading towards the end. And there are a lot of exciting things happening at CTTI. So welcome to the podcast, and I'd love to hear a little bit about how you ended up joining CTTI.   Sally Okun: (02:09) Janet, it's so nice to be here, and I really appreciate the opportunity to talk more about the Clinical Trials Transformation Initiative, and certainly the shoes that Pam left are large, and I'm still trying to find ways of filling them, and I think that's gonna take some time. How did I get to my current role? Well, interestingly enough, I had left Patients Like Me in 2020 and I was working on a variety of interesting projects at the time across the health spectrum. You know, I was consulting on a variety of different things and also enjoying some newfound freedom of semi-retirement, which was an interesting experience for the first time in my career. You know, by about mid 2021, maybe in light of the time that we were all spending at home as opposed to spending out enjoying each other's company socially or professionally, I started thinking more and more about the next chapter of my professional career.   Sally Okun: (02:57) So it wasn't long after that, that I was approached about the position of executive director at CTTI. And frankly, initially I didn't see the fit for me. You know, I've not spent my career in clinical trial work. I've spent a lot of my career in research and clinical research with patients and others, but hadn't really focused specifically on clinical trials and the clinical trial enterprise. So at first I really wasn't exactly sure it would be a good fit for me. However, after talking with some trusted colleagues and others, including the chairs of CTTI's executive committee, I was truly intrigued by the organization's impressive portfolio of work. I really hadn't been aware of just how much they have done over the last 15 years, 14 years, in terms of contributing to the improvement overall of the clinical trial experience, not just for participants, but for investigators as well as sponsors and others.   Sally Okun: (03:48) So, you know, I then looked a little more closely at the transforming trials vision, and I thought, you know what, here's an organization that is setting goals as a priority to be seeing clinical trials as patient centric and easily accessible as its number one pillar. And I thought, well, you know what, I think maybe this fit might be just right. So I spent a bit more time thinking about it and then made the leap in October of just a couple months ago - just hit my two month anniversary.   Janet Kennedy: (04:13) You mentioned something just now about the Transforming Trials 2030 program. What is that?   Sally Okun: (04:20) Well, you know, a couple of years ago, again, under Pam's leadership, they discussed the need to set some milestones to really stop sort of talking about improving clinical trials, but actually putting some stakes in the ground or pillars up to suggest that we need to have a goal for that transformation; that have to have things that we're working towards as a community in order to be able to achieve a better experience for everyone involved in clinical trials.   Sally Okun: (04:49) So what came out of that initial discussion was a set of five pillars that actually articulate quite specifically what we believe clinical trials should be like by 2030. And each one of them has a host of different objectives beneath the goal, that actually really describe how we might ultimately get to the point where we can say, "Yes, indeed, we have clinical trials that are now patient centered and easily accessible," for example, for the first pillar. But each one of them is complex. Each one of them requires a lot of understanding of what needs to get unpacked to better get at the kinds of things that need to get changed. So we are in the process right now of beginning a strategic plan for doing just that: taking each of the pillars and starting to think about how will we know that we've achieved success on this pillar? What will be the metrics we need to start thinking about for those.   Janet Kennedy: (05:42) Alright. So let's do some metrics here. What are the other four pillars?   Sally Okun: (05:46) Number one, as I said, is that clinical trials will be patient centered and easily accessible. And if we don't reach that, then some of the others are almost irrelevant. So that is actually the place to begin. But then the second one is that they're fully integrated into health processes. So that gives us an opportunity to really begin thinking about the continuously learning health system, where we embed within the care environment, the opportunity to research and learn, and then put that learning back into the care environment again, so that we have a full circle loop. The third one is that they are designed with a quality approach, and CTTI has done an incredible amount of work on something called quality by design.   Sally Okun: (06:27) It has a whole set of recommendations around how to determine how the quality of your trial based on a variety of different things - whether it's your recruitment numbers or other aspects of what the trial efficiency looks like. The fourth one is that clinical trials take full advantage; they maximally leverage all available clinical and nonclinical data, including data that's collected now with digital technologies to ensure that we max - minimize - the collection burden of getting data and actually improve the opportunity to make data more meaningful and impactful as part of the trial experience. And then lastly, although not least, is that clinical trials contribute knowledge to how to prevent diagnosis and treat disease. And that becomes something that's an objective around improving population health and the health of our people.   Janet Kennedy: (07:12) Okay. Those are very large topics, very large goals. Who is the Clinical Trials Transformation Initiative? Who's going to do this work?   Sally Okun: (07:23) We are a group of people who have come together within the organization that includes project managers who oversee our projects, and then strategic and engagement and communications team that oversees all of our communications with our steering committee members in our member organizations. So to give you an idea of what that structure looks like: we have a steering committee that includes about 80 organizations who are actually members of CTTI, Clinical Trials Transformation Initiative, and they commit to have a person assigned as a steering committee representative. So as we begin to think about tackling a new topic or a new initiative, we go to the steering committee and we make available to them the opportunity to join the project team. That project team then starts to create the infrastructure for accomplishing that project, which can include, first of all, the project plan and setting the aims and the objectives.   Sally Okun: (08:17) In many ways, it's creating a research study for the topic under consideration with that. Then they set out to consider what's the literature already say? Who are the expert people we need to be speaking to? So there's a lot of qualitative interviewing that goes on as part of the social science team from the Duke Clinical Research Institute; that is a connection for our team to be able to work with. And then the findings from those interviews begin to shape the recommendations that will come out about a particular topic area. For example, thinking about trials in healthcare setting; what do we need to know about the various barriers for those and the opportunities for those as well as the current landscape within which the clinical experience might or might not include participation in research activities? So there's an entire project management approach that is put on any topic we tackle.   Sally Okun: (09:08) The problem with it; it's an incredible opportunity for us to be able to map out these topics and really think about the issues as a group, but it's a labor intensive and time consuming. It can take up to two years to complete some of our projects because they are so intense in terms of diving deep into the problem and trying to come up with resources and tools to address it. So where we are faced today is thinking about how will transformed trials by 2030 if we continue to take this much time to get through our project? Which is why we're now starting to focus quite specifically on each of the pillars, and in many ways, making a project around that pillar. So if we take the first one, for example, and we say trials will be patient centered and easily accessible. The first question I have is how will we know that?   Sally Okun: (09:55) So we're starting to look at ways of being able to measure whether clinical trials today are, or are not patient centered. And that can be evidenced by whether or not patients were involved in the design of the trial, which is work we've already done in some other projects that we've done. Also, how is the enrollment handled? Did it include a diverse population? A variety of different ways of able to measure patient centricity around a trial. But you're right, each one of these has a lot embedded in it and our strategic approach to it right now is taking each one. I've assigned a project manager to every pillar. And we are now just beginning the process of setting a goal for the metrics for each one, and then identifying where we will go next in terms of what resources we know exist already within CTTI that we can map to it, and then what resources may exist in related efforts, whether it's transCelerate or the Multi-Regional Clinical Trials Initiative, others that are related efforts and aligned with our work, and starting to see where their resources could help to get us closer to realizing that particular vision or that pillar.   Janet Kennedy: (10:59) Now, I know your members represent nonprofit organizations, for profit organizations; I think you even have some patient volunteers who are part of your program. But where does the funding come from to make these things happen?   Sally Okun: (11:12) Well, you know, we are a public/private partnership with the FDA. We have been very fortunate to have an excellent relationship with the FDA over the last number of years, their interest in having us be available to tackle some of the more problematic issues that they are not in a position to do on their own. So the funding comes through a grant that supports that public/private partnership. Also our members, depending on the type of organization or company that they are, pay a membership fee to participate. And so that helps to offset some of the costs as well for maintaining our team and the other resources that we put to bear to get the work done on a regular basis.   Janet Kennedy: (11:50) And then how does it actually get done? So if you come up with these guidelines or these recommendations, is there a commitment on the part of these for-profit organizations that they'll actually start to modify, or is the science and the evidence so evident that it makes no sense not to implement these changes?   Sally Okun: (12:10) Yeah, that's a good question. It would be nice if everything seemed that intuitive. That yes, indeed, this is something we ought to be doing because it's just the right thing to do, right? And many of our recommendations would fall into that category. And I think many of our organizations commit to ensuring that they make attempts to incorporate those recommendations into the work that they're doing. Right now, we do have a method of identifying as part of the project itself. Towards the latter part of it, opportunities for adoption of the recommendation. So what that project team will think about is, so now what? How will we see these things come to life in the real world? So opportunities for providing some insights into how they might be best adopted are offered as part of the overall project deliverable at the end of the day. Now at the same time, we don't have an accountability measure to be able to say, "Yes, we believe these recommendations should be incorporated into the clinical trial on this particular topic area, and we expect that you will deliver on that."   Sally Okun: (13:09) So that is, I think, a professional courtesy that we afford to our members to say, "We appreciate that you committed a lot of time to helping us get to the point where we have these recommendations; now what we'd like to ask of you is to start sharing your experiences of using these recommendations and resources." So we actually - just this past year created the Building Better Trials case study exchange. And it's a portal where our members and non-members actually can contribute their experiences of using CTTI tools and resources for a particular purpose within their organization to advance or improve the efficiency and quality of clinical trial experiences. And those have been great. It's a wonderful opportunity for us to showcase how members and even non-members, as I said, use the CTTI resources in a way that actually do have an impact. And it's also a place where, from my perspective, most importantly, we can have continuous and shared learning. So what one group might have learned as a result of incorporating the recommendations for a single IRB, for example - that can be brought forth for others who are now facing the need to do that, the kinds of challenges and other ways that the organization actually met the recommendations that were set forth.   Janet Kennedy: (14:23) And for those listening, if you visit the website and go to this podcast episode, I'll make sure that there is a link there. Tell me a little bit about the patient's role; obviously you come in with a very unique background and a very wrong patient-centric experience and support system set up. So how are patients involved? Because let's face it, they don't have the kind of money it would take to join an organization. They may not even have the time to commit to some of the work that's being done here. But how do you incorporate the patient voice into the work of CTTI?   Sally Okun: (14:55) Well, it is an incredibly important voice and we pay a lot of attention to ensuring that we have mechanisms to get that. We actually have three members of the steering committee who are patient representatives and they come into the role with that responsibility. So they are - similar to being an organization - they have been identified through an application process as people who are willing and interested in contributing in a very substantive way to our understanding of what it means to be a patient in the context of clinical trials. So there's three of them on our steering committee itself, and one of them is actually a caregiver and the other two are patients, one living with breast cancer and the other with ALS, or Lou Gehrig's disease. And so the opportunity for them to be a part of the steering committee team, when a project comes up is wide open.   Sally Okun: (15:44) So we're always looking for ways of having them be involved. Now at the same time, we have many patient organizations that are members. You're so right; these organizations and patients individually don't have the resources to be able to pay a membership fee that would be sort of out of their range. Our membership fees vary on a sliding scale depending on the organizational type and the revenue that those organizations have. So a patient organization would - I think the highest amount is a $500 membership fee. And I think, you know, obviously, thinking about other organizations that may even be a challenge for, we would certainly work with them and talk with them about how we could make a membership opportunity come to fruition. So the other thing that we do is we do have a relationship with the FDA in terms of being able to help them support their patient engagement collaborative.   Sally Okun: (16:31) Now, this is a group of sixteen individuals who again, apply to be a part of the patient collaborative, and we actually help support that group. And it's an opportunity for us also to work more closely with FDA on how they can have access to patients in a way that helps them better understand the patient experience. So I think we try really hard to ensure that all of our projects have a patient representative on them, whether it's a patient individual or a patient group, or potentially having some relationship back to the patient engagement collaborative at FDA itself.   Janet Kennedy: (17:03) I think the work you're doing is so exciting and so important. I worry a little bit that your projects are huge, and you do have, you know, your goal of transforming trials by 2030. However, you know, in order to get there, you gotta take a few steps. So will you be releasing work along the way?   Sally Okun: (17:24) You know, as I said, one of the things that I did right from the very first day I arrived was to start talking with the team about measurement and data. As you know, coming out of Patients Like Me, one of the things that was a hallmark of our work with data, and we just felt like we needed to be data driven in order to be able to answer important questions for patients. It's no different here. It's very much the same. In order to be able to achieve these lofty goals of this transforming trials vision, we have to know where we're at now. What's the baseline data we know about the percentage of trials that are currently patient-centric? I really have no idea. We have to start thinking about ways of being able to find metrics that will tell us some of that. What's the evidence of a trial being patient-centric?   Sally Okun: (18:04) And there are tools out there that we will be starting to inventory and start to determine whether or not these will be ones that we'll put into the ways that we think about this. The short answer to your question is my objective with taking each pillar and intentionally unpacking it, is to better understand where do we need to begin? How will we know that we're making some progress? And that will be metrics and data. And then what are the resources that we are gonna need to start thinking about beyond just adoption? So it's not simply gonna be enough to say, "Here's the recommendations we're making about patient-centric trials for you to be able to, you know, have available to you." We'd like very much to start thinking about the ways of being able to have a bit of a scorecard on that. How do we know we've made a difference?   Sally Okun: (18:49) How do we know that some of the work and the learnings that we've been generating are actually going to translate into something that happens at the clinical trial level itself? And those are still things in development, but they are very important, to me personally, as part of my own work, but also for me as the executive director of the organization today to say, "Let's start measuring how well we're doing on every one of these," and better understand at what point we believe we've actually shifted the needle enough to be able to say, "We're reaching closer to that goal." Now, will we get there by 2030 on every one of them? You know what, I'm gonna remain optimistic. But I also recognize that there's so much that can happen between now and then that could interrupt our progress. And just taking into example, the COVID pandemic over the last year and a half, that stopped so many other kinds of research because we had to focus on that.   Sally Okun: (19:40) Our hope is that in some of the things that we've taken away and learned from that, as we look at each of these pillars, we wanna be able to say, will this stand up during a time of public emergency. Also are the things that we're coming up with applicable beyond the US. That's another important aspect that we have to start thinking about; clinical trials take place everywhere. And in fact, more people are recruited outside of the US than they are in the US. So we have to be thinking about that quite intentionally. And then lastly, the one area that we have not worked specifically in integrating into our prior projects is how can technology itself enable the success on this particular pillar? What are the opportunities that are available today and even tomorrow or two years from now that weren't available previously, that we can start to take advantage of that, help us move that goal closer to achieving it?   Janet Kennedy: (20:30) Well, you come in at an interesting time where you probably were interviewing during the process of all the stopping and starting and having to rethink about how clinical trials were going to go ahead in the midst of the pandemic. And now you've started when, you know, we thought we saw the light at the end of the tunnel and things have managed to pick up, and a lot of companies were able to pivot and use digital technology to move some clinical trials forward. However, I'm curious to know, as you come in and you were getting feedback from your steering committees, did you hear them say that this pandemic has accelerated our vision for decentralized clinical trials for the use of digital health technology?   Sally Okun: (21:14) Yes. And I may not have been hearing that because I wasn't here at the time, but definitely the projects that we had that as a result of some of the work being done through COVID and some webinars that we ran with some of our esteem colleagues - including Rob Califf and Harlan Krumholz, and Deb Estrin - just the idea that we have learned a lot as a result of the COVID experience, and we do need to ensure that what we've learned and those things that actually have benefited the clinical trial experience, not only for participants, but potentially for investigators as well, and outcomes more coming more quickly, that we have to ensure that these are not compromised as we move forward. That we don't fall back simply because it's a little easier to fall back and then it might be to fall forward. And that we take advantage of the things that we've learned, especially that technology is now a new enabler for improving the efficiency and quality of clinical trials. When used appropriately, when used in the right context, and when used with tools that actually have the ability to be used for regulatory decision making. You know, we have to ensure that we're not just simply falling back onto technology for technology's sake. We have to ensure that we're using the kinds of tools that actually can be helpful and useful for regulatory decision making.   Janet Kennedy: (22:30) Tell me a little bit about incorporating patient voice through patient reported outcomes and real world evidence. Is that something that is now you would almost consider mandated as part of a clinical trial?   Sally Okun: (22:42) Not so sure we're at mandated yet, but I think we can recognize just how important and valuable real world data is to understanding the real world experiences of real people, right? And yet I think we still have a fair amount of work yet to do on translating that - all of those different types, disparate types of data - into the totality of evidence, within which real world evidence will be one piece of it, that then contributes to a regulator's understanding of the sponsors data. So I think, yes, I think real world data and real world evidence have definitely achieved the validity of being important as part of the clinical trial and clinical research experience. And we're seeing, increasingly, opportunities where that's now starting to become more important to regulators. For example, you know, FDA is continuing to meet its mandate from the 21st Century Cures Act, where it was required to issue guidance on the use of real world data and real world evidence for regulatory decision making.   Sally Okun: (23:42) So they now have I think issued, I wanna say four of the four, but the last one or two are still in draft and will have no final rule yet. But those are important considerations; to think that the regulator themselves has now put forth what they feel will be required for the use of real world data and real world evidence for their ability to make good decisions. Additionally, EMA just recently stated a vision that enabling the use of real world evidence and establishing its value for regulatory decision making is going to be required in Europe by 2025. So these, you know, different entities are putting a stake in the ground and they're saying okay, similar to what we're doing with our vision, right? The idea is that we need to ensure that all the data that could contribute to our understanding of what it takes to have a medicine or device developed so that it can be used to improve outcomes for people needs to come to bear.   Sally Okun: (24:37) And we can't simply just look at it and say, "It's too complicated, or it's too difficult to translate that data into something that's understood by the regulators." We have to figure that out. And I think there's going to be a lot of work in the coming year or two on that very topic. You know, there's a lot of work being done. For example, Duke Margolis has had a point of care working group now for some time that I've actually enjoyed being a part of, and they're aligned very much with our work being done in trials and healthcare settings. So you can see those two things are both totally aligned and related. We're working at it from a different perspective. Duke Margolis, a little more from the policy side and CTTI, a little more from sort of the actual operational side, and bringing those groups together, some of which actually - some of our senior committee members sit on the Duke Margolis's working group too. So there's definitely starting to see this overlap of the attention paid to the value and the importance of this data. So I don't think it'll be long before it becomes something that's just a part of clinical trial experiences. But I think we still have a little ways to go before we actually see it integrated into every clinical trial.   Janet Kennedy: (25:41) Now before we started recording, we talked a Little bit about where and when we'll be able to interact with CTTI in public, and it sounds like you're shooting for a live meeting about a year from now?   Sally Okun: (25:53) The meeting we were talking about in fact was our steering committee meeting. So we have two meetings a year where we gather our executive committee and our steering committee for two days of meetings. One will be in March, which we're going to be doing virtually. And the other will be in September. In the meantime, throughout the course of the year, we actually do a number of webinars and other events that actually are open to the public to learn about some of the work we're doing. And we will definitely continue to do those. Those right now are quarterly, but we might likely start to increase those depending on how the work is going on. Each of the pillars for the transforming trials vision. But the September meeting will be the first time our steering committee and executive committee see each other in person since the pandemic. So we're very excited to shoot towards that. And obviously we'll be flexible and adaptable as needed, but right now we've made that commitment that we will see each other in person in the fall.   Janet Kennedy: (26:44) That is exciting. And I hope we get to meet in person sometime in 2022. The conference season looks like it's kicking back in with protocols in place, but that we're gonna be face to face more than we have been in the last two years. So hopefully I will get a chance to run across you at one of the conferences coming up in the spring.   Sally Okun: (27:05) I would enjoy that very much, Janet. Yes, I've actually just recently had my first foray out into the professional traveling again. And that was a quick trip to Boston and followed by a quick one to D.C. Both of which felt very odd, but also at the same time felt very good. And it was wonderful to see friends and colleagues that I just haven't seen in way too long.   Janet Kennedy: (27:26) It is surprising what good friendships are developed in the professional environment. We talked a lot about family and COVID'S impact on family units. But for many of us, our colleagues are also just as much our family members, and not being around these people who stimulate our minds and get us really interested in new ideas; it really is very draining and disappointing not to be near some of these amazing people.   Sally Okun: (27:55) That's such a good point. I mean, I know I thrive on just having conversations with people face to face and hearing their ideas about what they're doing or giving me some feedback on a presentation I just did. You know, I just always loved the after experience of being a part of a panel or part of a, you know, presentation that was being held at a conference, and just the feedback you would get from people on the things that you talked about is, was just - really provided me with professional learning that I couldn't get anywhere else, frankly.   Janet Kennedy: (28:22) Absolutely. Alright, well, hopefully a cup of coffee in real life is going to be on our agenda sometime in 2022. Well, Sally Okun, executive director for the Clinical Trials Transformation Initiative, thank you so very much for joining me on the People Always, Patients Sometimes podcast.   Sally Okun: (28:40) Janet, it has been my true pleasure to connect with you again, and I look forward to many times of having the opportunity to see you and spend some time again. Thank you so much. And thank you for the highlight for the Clinical Trials Transformation Initiative and our work. We really appreciate it.   Janet Kennedy: (28:55) Absolutely.

Louise Vetter (President and CEO of HDSA) underscores her support for the initiative to change the current diagnostic criteria and introduces the new Huntington's disease support platform - #PatientsLikeMe

Louise Vetter is the Chief Executive Officer of the Huntington's Disease Society of America (HDSA), the largest public not-for-profit organization devoted to the fight against Huntington's disease (HD). Since joining HDSA in 2009, she has led the expansion of the Society's reach with new programs and initiatives to strengthen the web of support for the HD community, advocate for better access to care for those affected by the disease, improve physician understanding of HD, and support scientific exploration to bring new treatments to HD families. Ms. Vetter serves as Secretary of the International Huntington's Association and is Treasurer of the Board of Directors of the American Brain Coalition. Additionally, she is an active member of the National Health Council and an editorial advisor to the Rare Disease Report. Before coming to HDSA, Ms. Vetter spent nearly 10 years leading the American Lung Association of New York where she advocated for families living with lung diseases, like lung cancer, asthma, cystic fibrosis, emphysema and more, to get the care and support they needed. Earlier in her career, she led national health education and public relations campaigns for Fleishman Hillard International Communications with emphasis on improving the patient-physician dialogue. At the heart of her experience is a firm passion for helping people face health challenges head on, always with dignity, understanding and hope. To join PatientsLikeMe, please visit www.hdsa.org/plm  

About Marisa: Marisa Zeppieri is a speaker, author of the new memoir CHRONICALLY FABULOUS, and founder of the NY nonprofit and social community, LupusChick.com. LupusChick serves to educate and empower those living with lupus and other autoimmune diseases and chronic illnesses. The community reaches almost 400K people per month, and was the launching point for CHRONICALLY FABULOUS, which inspires readers to continue striving toward their goals and not let a diagnosis or disability define who they are. Marisa is a former health journalist and Mrs. New York, and has been a fierce advocate and speaker in the world of chronic illness for over 13 years. She has spoken for and acted as a consultant for Astra Zeneca, GlaxoSmithKline, Novartis and Janssen Pharmaceuticals, and has served as the keynote speaker for UMASS Med School, Simmons College, and Patients Like Me. She currently serves as a contractor for The Department of Defense's Lupus Research Program, the host of the Lupus Foundation of New England's TILLY series, and her LupusChick story is featured as the 35th chapter of Lady Gaga's new Anthology, CHANNEL KINDNESS.

Social media has helped consumers educate themselves about their health and connect with other patients who suffer from the same chronic conditions. But the explosion of health information has also caused collateral damage. On today's episode, we welcome Kate Burke, MD, senior medical advisor for PatientsLikeMe. We discuss how virtual communities can overcome the pitfalls of social media and help patients better manage their condition, slow disease progression and give them control of their health.

About Marisa: Marisa Zeppieri is a speaker, author of the new memoir CHRONICALLY FABULOUS, and founder of the NY nonprofit and social community, LupusChick.com. LupusChick serves to educate and empower those living with lupus and other autoimmune diseases and chronic illnesses. The community reaches almost 400K people per month, and was the launching point for CHRONICALLY FABULOUS, which inspires readers to continue striving toward their goals and not let a diagnosis or disability define who they are. Marisa is a former health journalist and Mrs. New York, and has been a fierce advocate and speaker in the world of chronic illness for over 13 years. She has spoken for and acted as a consultant for Astra Zeneca, GlaxoSmithKline, Novartis and Janssen Pharmaceuticals, and has served as the keynote speaker for UMASS Med School, Simmons College, and Patients Like Me. She currently serves as a contractor for The Department of Defense's Lupus Research Program, the host of the Lupus Foundation of New England's TILLY series, and her LupusChick story is featured as the 35th chapter of Lady Gaga's new Anthology, CHANNEL KINDNESS. She is also always exhausted and loves to nap ;)

Dr. Kate Burke is Senior Medical Advisor at PatientsLikeMe and Jed is a patient leader, advocate and patient with a range of conditions including ankylosing spondylitis (AS) and Lyme disease. They join me on the podcast to talk about the robust online community PatientsLikeMe and how it helps patients with rare diseases take charge of their health and helps life science organizations better understand patient needs. By integrating medical data from a variety of sources, the site helps patients share that data with their care team and make more informed healthcare choices.  The community also encourages connections amongst those suffering from the same rare disease and facilitates participation in virtual or semi-virtual clinical trials. COVID-19 forced a re-evaluation of the power of online access for this community. Many of the barriers for participating in live group activities have been removed by going online and both Kate and Jed agree the changes are here to stay. @PatientsLikeMe #rarediseases #digitalhealth #ankylosingspondylitis #AS #COVID19 PatientsLikeMe.com Listen to the podcast here

Dr. Kate Burke is Senior Medical Advisor at PatientsLikeMe and Jed is a patient leader, advocate and patient with a range of conditions including ankylosing spondylitis (AS) and Lyme disease. They join me on the podcast to talk about the robust online community PatientsLikeMe and how it helps patients with rare diseases take charge of their health and helps life science organizations better understand patient needs. By integrating medical data from a variety of sources, the site helps patients share that data with their care team and make more informed healthcare choices.  The community also encourages connections amongst those suffering from the same rare disease and facilitates participation in virtual or semi-virtual clinical trials. COVID-19 forced a re-evaluation of the power of online access for this community. Many of the barriers for participating in live group activities have been removed by going online and both Kate and Jed agree the changes are here to stay. @PatientsLikeMe #rarediseases #digitalhealth #ankylosingspondylitis #AS #COVID19 PatientsLikeMe.com Download the transcript here

An interview with Jamie Heywood, who got into the medical research field when his brother was diagnosed with ALS and Jamie wanted to do everything he could do to save him. Jamie started an ALS research institute, and later was co-founder and CEO of PatientsLikeMe, an organization for collecting real-world medical data directly from patients. He discusses the strengths and challenges in collecting real-world patient-reported data, why such tactics haven't been as disruptive and revolutionary as their potential suggests, and thoughts on the problems we face in medical research and healthcare solutions in general.

Things are just getting even more intense on #TheShot of #DigitalHealth Therapy. Jim and I had our first dog on our show making an appearance along with our awesome guest Carlos Rodarte and we chatted about:

An overabundance of info makes it difficult to find trusted sources, reliable guidance when needed, in manner, context, & useful format. With Janice McCallum. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem 00:53. 1 Introducing Janice McCallum 03:32. 2 Find a drop in the firehose 04:47. 2 Infodemiology 08:28. 3 Finding information: PubMed and search engines 13:23. 4 Absorbing the information found 16:34. 5 What do you trust? 19:64. 5 Trust but verify. Follow the money. 21:36. 6 Never trust a headline 25:16. 7 Information from patient communities 26:48. 7 Know the source 30:45. 8 Trusted information, trusted sources, Twitter 33:21. 8 Good information crowding out bad information 38:57. 10 Reflection 44:15. 11 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger Sponsored by Abridge Thanks to these fine people who inspired me for this episode: Andy Oram, Tyson Ortiz, Carla Berg, Grace Cordovano, Monica Cunningham, Gunther Eysenbach, Colin Hung, Marilyn Mann, Susan Woods Links Please read Report from The Guardian and Kaiser Health News about More than 900 US healthcare workers have died of COVID-19-and the toll is rising Resources and references: https://pubmed.ncbi.nlm.nih.gov/12517369/ (Gunther Eysenbach’s 2002 article on Infodemiology) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1839505/ (Gunther Eysenbach’s 2006 article on Infodemiology) https://pubmed.ncbi.nlm.nih.gov/32310818/ (April 2020 article, where infodemiology is study of info usage patterns. Fulltext link for 2020 article: https://www.jmir.org/2020/4/e16206/ WHO Infodemiology Conference webpage: https://www.who.int/news-room/events/detail/2020/06/30/default-calendar/1st-who-infodemiology-conference Twitter thread on WHO Infodemiology conference: https://twitter.com/juansarasua/status/1277596552719224833 First Draft, UK org fighting misinformation, which participated in the WHO Infodemiology conference: https://firstdraftnews.org/ Check out Information Disorder report on their site. For understanding medical research studies, Between The Lines, a book by Marya Zilberberg, MD: https://www.amazon.com/Between-Lines-Finding-Medical-Literature/dp/0985456205/ref=cm_cr_arp_d_product_top?ie=UTF8 https://participatorymedicine.org/epatients/2008/05/two-research-papers-published-on-patientslikeme.html (JM comment on infodemiology on post in Society for Participatory Medicine (S4PM blog). https://participatorymedicine.org/epatients/2009/09/health-it-policy-e-patients-want-access.html (See JM comment to Susannah Fox’s post of S4PM blog). Medical Library Association (MLA): https://www.mlanet.org/page/find-good-health-information National Library of Medicine (NLM): http://www.healthfinder.gov/ ; https://medlineplus.gov/ Merck Manual, Consumer Edition: https://www.merckmanuals.com/home Also mentioned consumer health sites: Healthline.com, EveryDayHealth.com, WebMD.com, MayoClinic.org and Patient community sites: PatientsLikeMe.com, Inspire.com. The Bulwork Related podcasts and blogs Health Hats series about CDS, Clinical Decision Support, Making Health Choices. About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen,

An overabundance of info makes it difficult to find trusted sources, reliable guidance when needed, in manner, context, & useful format. With Janice McCallum. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem 00:53. 1 Introducing Janice McCallum 03:32. 2 Find a drop in the firehose 04:47. 2 Infodemiology 08:28. 3 Finding information: PubMed and search engines 13:23. 4 Absorbing the information found 16:34. 5 What do you trust? 19:64. 5 Trust but verify. Follow the money. 21:36. 6 Never trust a headline 25:16. 7 Information from patient communities 26:48. 7 Know the source 30:45. 8 Trusted information, trusted sources, Twitter 33:21. 8 Good information crowding out bad information 38:57. 10 Reflection 44:15. 11 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger Sponsored by Abridge Thanks to these fine people who inspired me for this episode: Andy Oram, Tyson Ortiz, Carla Berg, Grace Cordovano, Monica Cunningham, Gunther Eysenbach, Colin Hung, Marilyn Mann, Susan Woods Links Please read Report from The Guardian and Kaiser Health News about More than 900 US healthcare workers have died of COVID-19-and the toll is rising Resources and references: https://pubmed.ncbi.nlm.nih.gov/12517369/ (Gunther Eysenbach's 2002 article on Infodemiology) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1839505/ (Gunther Eysenbach's 2006 article on Infodemiology) https://pubmed.ncbi.nlm.nih.gov/32310818/ (April 2020 article, where infodemiology is study of info usage patterns. Fulltext link for 2020 article: https://www.jmir.org/2020/4/e16206/ WHO Infodemiology Conference webpage: https://www.who.int/news-room/events/detail/2020/06/30/default-calendar/1st-who-infodemiology-conference Twitter thread on WHO Infodemiology conference: https://twitter.com/juansarasua/status/1277596552719224833 First Draft, UK org fighting misinformation, which participated in the WHO Infodemiology conference: https://firstdraftnews.org/ Check out Information Disorder report on their site. For understanding medical research studies, Between The Lines, a book by Marya Zilberberg, MD: https://www.amazon.com/Between-Lines-Finding-Medical-Literature/dp/0985456205/ref=cm_cr_arp_d_product_top?ie=UTF8 https://participatorymedicine.org/epatients/2008/05/two-research-papers-published-on-patientslikeme.html (JM comment on infodemiology on post in Society for Participatory Medicine (S4PM blog). https://participatorymedicine.org/epatients/2009/09/health-it-policy-e-patients-want-access.html (See JM comment to Susannah Fox's post of S4PM blog). Medical Library Association (MLA): https://www.mlanet.org/page/find-good-health-information National Library of Medicine (NLM): http://www.healthfinder.gov/ ; https://medlineplus.gov/ Merck Manual, Consumer Edition: https://www.merckmanuals.com/home Also mentioned consumer health sites: Healthline.com, EveryDayHealth.com, WebMD.com, MayoClinic.org and Patient community sites: PatientsLikeMe.com, Inspire.com. The Bulwork Related podcasts and blogs Health Hats series about CDS, Clinical Decision Support, Making Health Choices. About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen,

This episode covers some of the dramatic changes in the field of medical research as a result of COVID19 making it unsafe for people to visit medical research facilities, and medical professional's time and efforts being redirected to fighting the new virus. The guests on the podcast are Paul Wicks, a digital health consultant and scientific advisor to Sano Genetics as well as several other digital health companies. Paul was previously the VP of Innovation at PatientsLikeMe, one of the worlds largest patient social networks and one of the first large-scale platforms for patients to share knowledge and connect with one another, and a pioneer in digital medical research. Paul was previously on the podcast on episode 22 in October 2019 "Behind every data point is a patient". The second guest is Liam Eves, who is also part of the Sano team and has worked in medical research and life sciences for about 15 years working in a number of different parts of the clinical trial ecosystem including at CROs, site management companies, and startup companies innovating in remote clinical trials. Liam is experienced in virology clinical trials, and explains how a typical trial is conducted and some of the challenges with COVID19.

This episode covers some of the dramatic changes in the field of medical research as a result of COVID19 making it unsafe for people to visit medical research facilities, and medical professional's time and efforts being redirected to fighting the new virus. The guests on the podcast are Paul Wicks, a digital health consultant and scientific advisor to Sano Genetics as well as several other digital health companies. Paul was previously the VP of Innovation at PatientsLikeMe, one of the worlds largest patient social networks and one of the first large-scale platforms for patients to share knowledge and connect with one another, and a pioneer in digital medical research. Paul was previously on the podcast on episode 22 in October 2019 "Behind every data point is a patient". The second guest is Liam Eves, who is also part of the Sano team and has worked in medical research and life sciences for about 15 years working in a number of different parts of the clinical trial ecosystem including at CROs, site management companies, and startup companies innovating in remote clinical trials. Liam is experienced in virology clinical trials, and explains how a typical trial is conducted and some of the challenges with COVID19.

Get to know a little bit more about our new scientific advisor Dr Paul Wicks. Paul has dedicated much of his career to patient-centric research and building patient communities, particularly in rare disease. Paul has spent 17 years in the digital health and online community space, 13 of which were spent as a senior leader at PatientsLikeMe.

Get to know a little bit more about our new scientific advisor Dr Paul Wicks. Paul has dedicated much of his career to patient-centric research and building patient communities, particularly in rare disease. Paul has spent 17 years in the digital health and online community space, 13 of which were spent as a senior leader at PatientsLikeMe.

Kate Brigham, VP of Product, Design, & Research at ezCater, discusses organizational design, roadmaps, user-research, designing to solve the needs of several groups at once, and, as a leader, empowering others to solve problems. This episode of Giant Robots is sponsored by: ISL Online Indeed Prime Links & Show Notes ezCater Stefania Mallett on Giant Robots PatientsLikeMe Kate on Twitter Kate on LinkedIn See open positions at thoughtbot! Become a Sponsor of Giant Robots!

Managing Pain and Suffering at Work with Amy Newell Guest Amy Newell: (https://twitter.com/amynewell): Director of Engineering at Wistia. Previous Director of Engineering at PatientsLikeMe (https://www.patientslikeme.com/). RailsConf 2019 - Failure, Risk, and Shame: Approaching Suffering at Work by Amy Newell (https://www.youtube.com/watch?v=BRG6uIkHH8c) Summary Our guest this week is Amy Newell. Amy is the Director of Engineering at Wistia, and she gave a talk at RailsConf this year entitled “Failure, Risk, and Shame: Approaching pain and suffering at work”. We have what I hope is an uplifting conversation about failure and pain, how to recognize it, and how to skillfully manage those feelings to be more resilient, prevent additional pain, and ultimately be more satisfied with your job. Notes 01:56 - Why Use Words Like “Pain” and “Shame” When Talking About Work Experience - Thinking, Fast and Slow by Daniel Kahneman (https://www.amazon.com/Thinking-Fast-Slow-Daniel-Kahneman/dp/0374533555) 04:21 - Specific Kinds of Pain and Suffering at Work 07:31 - Mistakes People Make When They’re Dealing with Failure, Anxiety, and Shame 10:28 - Skillful Responses 17:37 - Mitigating Pain 21:57 - Skillful Responses (Cont’d) 25:04 - Mindfulness - RAIN: Tara Brach (https://www.tarabrach.com/rain/) 30:34 - Feedback and Identity - Thanks for the Feedback: The Science and Art of Receiving Feedback Well by Douglas Stone and Sheila Heen (https://www.amazon.com/Thanks-Feedback-Science-Receiving-Well/dp/0670014664) - Paul Graham: Keep Your Identity Small (http://www.paulgraham.com/identity.html) Special Guest: Amy Newell.

O grupo de saúde UnitedHealth comprou a PatientsLikeMe, uma plataforma online que permite a pessoas com a mesma doença partilhar a evolução do seu bem-estar. A compra dá acesso a uma vasta base de dados de mais de 650 mil membros e relativos a perto de 3 mil doenças. Saiba mais sobre inovação e nova economia em supertoast.pt.

This is our first episode with a guest in 2019. Welcome to our friend, Karla! Kim and Karla FriendZ In this episode, Kim spends some time talking to our friend Karla. Not only is Karla a good friend of ours, she is also hosts our art day each month. Not only do we enjoy doing art, we also love road trips and going to concerts together. We hope you love Karla as much as we do! And Kim finally gets someone to sing harmony with her!Karla AdviceDo you own thing and enjoy others who do their own thing.Don’t spend so much money on your kids, spend time with them. When attending a seminar, always sit in the back. Then, if it isn’t good, you can leave. You have better things to do.Ambien + Amazon = bad for your checkbook.You can make money trading nickels for dimes.Transverse Sinus Vein ResourcesPatients Like Me Dr. Teals Pure Epsom Salt Dead Sea Cosmetics MoisturizersAnti Aging Hand CreamSunbeam Heated Throw BlanketGood Sleep at Night Essential OilDon’t forget to subscribe on itunes, sign up for our email list, and follow us on social media. Special Guest: Karla Rush.

Собеседник: Евгений Емельянов, Chief Product Officer в Avito FB: https://www.facebook.com/evg.emelyanov Обсуждаем доклады и общее впечатление о конференции - Про этику, цели и выбор метрик. Kim Goodwin (VP Product & UX at Patients Like Me) - Про то, как связывать видение комании и фичи. Roan Lavery (Chief Product Officer, FreeAgent) - Про лидерство и построение устойчивых, к внешней среде, команд. Ryan Freitas (Director of Product Design at Facebook) - Про создание сообщест и их использование как инструмента. Emily Webber (Author of Building Successful Communities of Practice) - Про психологию и ментальные модели при создании продуктов. Joe Leech (Product Strategy Consultant) - Про то, как создаются "железные" продукты в Google. Ivy Ross (VP Design for Hardware at Google) - Про гипотезы и эксперименты и научный подход. Rik Higham (Principal Product Manager at Skyscanner) - Про минимально возможный продукт. Sally Foote (Director of Product Innovation, Photobox) - Про психологическую безопасность и развитие команд. Richard Banfield (Co-Author of Design Sprint & Product Leadership) - Про самоанализ, принятие бизнес решений и валидацию принятых решений. Janice Fraser (Chief Product Officer at Bionic) - Общие впечатления о конференции bit.ly/ps2018_scp - обмен опытом, новые знания, полезные знакомства. ProductSense'18 Minsk - конференция для менеджеров продуктов. Наш телеграм канал: t.me/productsense

I muse quickly on epilepsy resources: Epilepsy Society (www.epilepsysociety.org.uk), Patients Like Me (www.patientslikeme.com), Danny Foundation (www.dannyfoundation.com)

We are at a rare juncture in time where the future is up for grabs and the following realms are in a state of upheaval: Environment Economics Society Education Politics Technology “When the winds of change blow, some people build walls, others build windmills” - Chinese Proverb This book and this innovation show are about windmills and the people who are building them. We talk about the heroes of innovation and disruption, those people sacrificing so much to make the World a better place: Jamie Heywood's nonprofit PatientsLikeMe portal – modelled after dating sites and his fight to find a cure for ALS after his brother Stephen contracted and died from the illness. Samir Brahmachari, India's highest ranking scientist who is fighting for a cure to fight antibiotic-resistant tuberculosis. TB kills 4,000 per day worldwide and 1 person per minute in India. There hasn't been a front-line drug since 1970. We talk about Dr Erika Syger who was suffering death threats for her drive to disrupt and implement new food systems. We discuss Peter Dearman's “liquid air” engine, which brings food refrigeration to the developing world. We talk about the energy trilemma and the clash between environmentalists and fossil fuel lobbyists. We discuss the great story of former professional basketball player Reinhard Koch and Mayor Peter Vadasz and the town of Güssing, Austria, which experienced a massive revival when it went green. We mention the case of “Open Utility” and James Johnson who was inspired by Ethernet co-director Bob Metcalfe and built a smart grid based Ethernet, an uber for energy. Ashley Atkinson and KGD (keep growing Detroit), which uses “urban farming” to achieve urban renewal. In education, we talk about Carl Jarvis and how he turned around one of the UK's worst-performing schools in spite of the education system who bullied him. In politics, we mention Maria Ines Naha and Fernando Pimental of Brazil and the idea of participatory budgeting, where citizens decide where the budget is assigned. You can find out more about Mark Stevenson and his books here: https://markstevenson.org/

A Computação Vestível é uma proposta de aproveitar o corpo como origem e destino da interação. Os dispositivos são pequenos o suficiente para não causar desconforto e oferecem aplicativos específicos para processar dados contextuais gerados à partir do corpo de referência. As interfaces da Computação Vestível não exigem atenção total e podem inclusive ser operadas com a visão periférica ou com outros sentidos, como o tato. A Computação Vestível oferece a oportunidade de experiências de alteridade que transformam hábitos e pensamentos.Slides Áudio Computação vestível e interações com o corpo consciente [MP3] 1h 43min Transcrição O ábaco em formato de anel utilizado entre os séculos XVII e XIX na China é considerado o precursor mais antigo da Computação Vestível. Suas contas eram tão pequenas que, para manuseá-lo, era necessário um objeto pontiagudo. Isso não era um problema para as usuárias da época, mulheres educadas que tinham à disposição diversos grampos de cabelo. O ábaco era tanto um símbolo de distinção quanto uma ferramenta prática no comércio. Embora seja possível realizar cálculos com o ábaco, ele ainda não permitia computar dados. Em 1975, a miniaturização dos eletrônicos permitiu encaixar uma calculadora dentro de um relógio. A primeira empresa a lançar um relógio calculadora foi a Time Computer, com o modelo Pulsar. A tela era feita de LED e gastava tanta bateria que só mostrava as horas quando se apertava no botão "Pulsar". Este botão era o único que podia ser apertado sem a ajuda de um objeto pontiagudo. Tal como o ábaco, o Pulsar aproveitava a disposição de canetas nos bolsos dos homens de negócios que podiam comprá-las. Os relógios calculadora se tornaram mais complexos, porém, nenhum deles permitia computar dados, por isso são precursores da Computação Vestível. A capacidade de programar algoritmos e computar dados em objetos vestíveis toma corpo a partir dos anos 1990, quando o paradigma de Computação Pessoal se consolida. Pesquisadores de diversas Universidades experimentaram maneiras de computar cada vez mais relevantes ao cotidiano. O grupo Borg Lab do MIT (que depois viria a se chamar Wearable Computing), desenvolveu uma série de computadores vestíveis que aproveitavam dados como a localização do usuário, o campo de visão, batimentos cardíacos para guardar ou prover informações contextuais. Eles fizeram isso também para demonstrar que alguns conceitos trabalhados na ficção científica, como o do ciborgue, já era possível com a tecnologia da época. Um detalhe interessante é a combinação bizarra entre dispositivos estrambóticos e as vestimentas casuais da época. MindMesh é uma capa de circuitos instalada permanentemente sobre o crânio que se comunica com eletrodos implantados dentro do cérebro. É possível plugar diferentes acessórios a essa capa, como por exemplo, câmeras e dispositivos de memória artificial que podem interagir diretamente com o cérebro humano. Steve Mann iniciou esse projeto em 2012 com a intenção de ajudar deficientes visuais a enxergar ou pacientes de Alzheimer a recuperar sua memória. O protótipo ainda não é funcional, mas levanta por si só uma série de questionamentos. Quem duvida da viabilidade do MindMesh, precisa conhecer os diversos projetos que Mann desenvolveu no passado que hoje já foram incorporados ao arsenal de tecnologias do cotidiano. O EyeTap, por exemplo, é um óculos digital que Steve Mann criou em 1999 e que serviu de base para o Google Glass, lançado em 2012. Em 2012, poucos meses antes do lançamento do Google Glass, Steve Mann foi barrado em um restaurante do McDonalds em Paris. O gerente pediu que Mann retirasse o seu óculos digital, porém, Mann mostrou-lhe um documento do seu médico recomendando o uso do dispositivo. Embora Mann tenha explicado que o dispositivo estava preso à sua cabeça, o gerente do McDonalds tentou retirar o óculos à força. Apesar dos danos causados ao dispositivo, a foto do momento desconfortável ficou gravada. O Google Glass não chegou a ser lançado para o público em geral. De 2012 a 2015, a empresa vendeu o produto a desenvolvedores interessados em experimentar a tecnologia. Embora o produto tenha atraído o interesse de muitos desenvolvedores, acabou recebendo muitas críticas e reclamações dos não-usuários, ou seja, as pessoas que interagiam com esses desenvolvedores e se sentiam desconfortáveis com a presença de um dispositivo que permitia gravação não autorizada de seus rostos. Este foi um dos diversos problemas apresentados pelo Google Glass devido à falta de consideração pelo corpo do usuário e pelos não-usuários. O Apple Watch lançado em 2015, pelo contrário, tomou o corpo do usuário como uma fonte constante de dados. Equipado com sensores biométricos e algoritmos de detecção de atividade física, o Apple Watch propôs auxiliar na mudança de hábitos pouco saudáveis, como o sedentarismo. O aplicativo Activity mostra a quantidade de tempo gasto pelo usuário na posição sentada, em pé ou andando dentro do período de um dia. Caso não haja muito movimento, o aplicativo dispara notificações convidando o usuário a se mexer. Caso haja movimento, as notificações atuam com reforço positivo. Apple Watch também levou em consideração que a apresentação do corpo em público está sujeita a tendências de moda. Os relógios, assim como os óculos, são considerados acessórios importantes na moda e devem combinar com as vestimentas. A forma do Apple Watch é básica, visando um maior número de combinações possíveis. Além disso, é possível escolher diferentes estilos visuais para o mostrador do relógio. O alumínio escovado brilha menos do que materiais como prata e ouro, que costumam ser usados em relógios de luxo, porém, ainda demonstra esmero na produção. Apple Watch levou em consideração que acessórios corporais são símbolos de status social. A maior parte das pessoas que vi usando um Apple Watch eram executivos ou gerentes de grandes empresas. O relógio digital comunica que esse tipo de pessoa está atualizada com o que há de mais moderno em termos de tecnologia. Por outro lado, também demonstra que a pessoa é muito ocupada e precisa estar atenta a fluxos de informação o tempo todo. Na foto, Peter Murdoch, magnata estadunidense, exibe seu Apple Watch com orgulho. Talvez o maior fator de sucesso do Apple Watch tenha sido a promessa de incentivar a atividade física do usuário, visando, com isso promover a perda de peso. Nesta foto, usuários compartilham suas conquistas na perda de peso após utilizar o Apple Watch por alguns meses. Conclui-se que o Apple Watch levou em consideração o sentimento de insatisfação com o corpo característico de nossa cultura. Apple Watch levou também em consideração os ritmos da interação corporificada, ou seja, a interação entre pessoas que leva em consideração o corpo delas, como por exemplo, uma conversa face-a-face. Nessas ocasiões, o usuário pode ler notificações com um golpe de vista e leve torção do pulso, o que é menos intrusivo para uma conversa do que sacar um smartphone do bolso. Existe também um botão de fácil acesso para desligar tais notificações ("não perturbe"). O corpo humano é um objeto de interesse científico, em particular, da Medicina. A Apple levou em consideração o interesse da Medicina sobre as variedades de corpos humanos e lançou em parceria com a Universidade de Stanford um aplicativo chamado Apple Heart Study para participantes voluntários cederem dados de batimentos cardíaco. É a primeira vez que se realiza um estudo sobre arritmia cardíaca com uma amostragem tão grande. A Computação Vestível (e o Apple Watch) surgiram a partir do momento em que pesquisadores da Interação Humano Computador abandonaram a visão cognitivista do corpo, que considera o corpo um mero suporte para a mente. Nesta visão, o corpo não contribui para o pensamento e pode inclusive atrapalhar o pensamento com emoções inoportunas. As interfaces computacionais construídas à partir dessa visão aproveitam apenas o pensamento lógico e abstrato do usuário, tratando a saúde e ergonomia do corpo como secundárias. No fundo, o corpo é tratado como uma coisa nojenta ou até mesmo asquerosa que deve ser superada pela singularidade tecnológica. Um filme que mostra o conflito de superar as emoções do corpo é Videodrome (1983), de David Cronenberg. Através de uma estética gore, o filme demonstra que a televisão não é só veículo de informações, mas também e principalmente um veículo para afetos corporais. A visão que inspira o desenvolvimento da Computação Vestível é conhecida como encarnada. Nesta visão, a mente não seria um fenômeno transcendental magnífico, mas sim um produto da carne humana. Existiria, então, um continuum entre o que acontece no cérebro e o que acontece nos demais órgãos do corpo humano. A postura corporal, os gestos, as condições físicas e o estado de saúde seriam fundamentais para o pensamento humano, tanto quanto a atividade neuronal. Esse corpo encarnado possui, também uma relação ativa em relação ao ambiente, modificando o que não convém. Uma vez que no ambiente existem outros corpos e o ambiente é compartilhado, a capacidade de agir do corpo acaba sendo objeto de disputas políticas sobre o que pode ou não pode ser feito. Essa visão encarnada do corpo é apresentada por David Cronenberg em um filme mais recente, ExistenZ (1999). Neste filme, a protagonista se conecta a um mundo virtual através de um órgão biológico externo. Cronenberg demonstra que a tecnologia já não pode mais ser considerada como um mal que adentrou nossos corpos, mas como parte constitutiva e fundamental do mesmo. As condições que impulsionam o desenvolvimento da Computação Vestível são diversas. Em primeiro lugar, existe a questão ergonômica. Conforme nossas atividades cotidianas se tornam dependentes de computadores, menos conforto e mobilidade saudável temos à disposição. O uso do computador por longas horas de uso está associado a diversas doenças ligadas ao sedentarismo. Embora existam recomendações sobre como utilizar o computador de maneira saudável, o modo de interação cognitivista desestimula a atividade física. Além da questão ergonômica, existe a limitação de conhecimentos que podem ser expressos através de computadores. Pesquisadores de diferentes áreas já demonstraram que o corpo humano possui diversos conhecimentos tácitos que são extremamente difíceis de expressar e computar pelo modo cognitivista de interação. Por exemplo, o conhecimento sobre como amarrar calçados. É extremamente difícil descrever em palavras esta operação para uma criança, mas é fácil colocá-la no colo e utilizar o corpo diretamente para ensiná-la. Pois assim torna-se possível utilizar gestos sutis para demonstrar como realizar a operação. Como este, existem diversos conhecimentos fundamentais à cultura humana que não podem ser computados devido à limitações das interfaces computacionais. O computador praticamente só utiliza o sentido da visão para comunicar informações. Embora a quantidade de informações que podem ser adquiridas pelo canal visual seja maior do que por outros canais, não há nenhuma vantagem em termos de qualidade. Com frequência, a quantidade de informações prejudica a qualidade da compreensão, gerando mais confusão e distração do que conhecimento. Na ânsia de aproveitar a capacidade informacional do canal visual, computadores acabam exigindo atenção demais para serem operados. As pessoas costumam ficar completamente focadas no computador e distraídas para tudo o mais que está ao seu redor, inclusive, e principalmente, seu próprio corpo. Um dos principais problemas de postura no uso do computador deve-se ao costume das pessoas ignorarem as dores de acomodação que servem para estimular sua mudança sua postura. A Computação Vestível tenta superar estes problemas trazendo o computador para perto do corpo. Os dispositivos são pequenos o suficiente para não causar desconforto e oferecem aplicativos específicos para processar dados contextuais gerados à partir do corpo de referência. As interfaces da Computação Vestível não exigem atenção total e podem inclusive ser operadas com a visão periférica ou com outros sentidos, como o tato. A Computação Vestível ainda está na sua infância, porém, acredita-se que o desenvolvimento de algumas tecnologias recentes pode contribuir para um desenvolvimento rápido de funcionalidades. Essas novas tecnologias conseguem processar dados contextuais e inferir informações relevantes mais rapidamente do que era possível anteriormente. A consultoria Callaghan Innovation identificou em 2017 três áreas estratégicas para vestíveis: Saúde, Trabalho e Lazer. Na Saúde é possível observar uma mudança no comportamento dos pacientes, que estão cada vez mais ativos na busca por informação sobre suas condições de saúde e também na automedicação, com todos os perigos que isso traz. O website Patients Like Me permite que pacientes compartilhem que remédios estão tomando e os sintomas que estão sentindo. Acompanhando a mudança, os serviços de saúde estão buscando oferecer cada vez mais soluções que dispensem a visita ao hospital ou clínica, como o homecare e a Medicina Preventiva. No Trabalho, existe uma tendência de normalizar a vigilância do trabalhador para medir sua performance ou analisar suas ações. O fim da privacidade é compensado pelo aumento da segurança e produtividade. A geração e utilização de informações contextuais para organização do trabalho eficiente está se tornando uma justificativa suficiente para basicamente qualquer mudança nas relações de trabalho. A polícia de Washington DC realizou em 2017 um experimento para verificar se policiais portando câmeras iriam tratar melhor os cidadãos do que aqueles que não estavam portando o dispositivo. O resultado foi negativo. Os policiais com câmera receberam o mesmo número de reclamações que os que não portavam as câmeras. Já no Lazer, existe uma preocupação muito grande em transformar momentos ociosos em momentos de lazer. Qualquer espera ociosa precisa ser preenchida por um jogo ou distração divertida. A gamificação aparece como uma maneira de misturar Lazer com Trabalho e até mesmo com Saúde. Nem mesmo as crianças ficam de fora da tendência. O Leap Band é um vestível que incentiva crianças a fazer exercícios físicos através de um personagem virtual. Embora não garanta resultados para perder peso, o Leap Band seduz pais preocupados com o alarmante crescimento da obesidade infantil criada, em partes, pelo sedentarismo dos computadores e videogames. Essas tendências estão provocando diversas respostas da sociedade. Um movimento peculiar chamado Quantified Self defende que, se as pessoas tiverem controle e acesso a dados gerados à partir de seu corpo, a vigilância é inofensiva. Os ativistas desse movimento acreditam que ter mais dados à disposição pode levar à decisões melhores informadas e um conhecimento maior acerca do próprio corpo. Um pioneiro deste movimento é Nicholas Felton, que de 2004 a 2014 publicou um relatório anual sobre sua vida pessoal contendo dados sobre as pessoas com quem ele interagia, o tipo de atividade que ele se dedicava e as alterações nos dados biométricos. Na última edição do Feltron Annual Report há tentativas de compreender correlações entre os ritmos biológicos. Nicholas Felton publicou na App Store junto com colegas o aplicativo que permitia o registro de dados sobre sua vida, o Reporter App. Com esse aplicativo, qualquer pessoa pode agora compilar um relatório anual com estatísticas sobre seu comportamento. O aplicativo oferece a possibilidade de customizar o tipo de dados coletado e, com isso, gerar novos insights sobre o comportamento. Uma crítica levantada ao movimento Quantified Self é que a coleta de dados estaria também interferindo sobre os ritmos biológicos. Uma pesquisa realizada por Baron et al (2017) descobriu que alguns pacientes com distúrbio do sono que utilizam aplicativos rastreadores de sono (sleep trackers) sentem tanta ansiedade que acabam dormindo menos do que os que utilizam métodos analógicos de mensuração do sono. A mensuração de dados acaba, portanto, gerando um ciclo vicioso de dependência da tecnologia para o sono. Observando o crescimento do interesse pelo corpo no Design de Interação, tenho trabalhado juntamente com meu colega Rodrigo Gonzatto numa visão encarnada chamada corpo consciente. Esse termo foi inicialmente proposto por Paulo Freire para designar uma pessoa que está consciente de seus condicionamentos e liberdades. Na disciplina Design de Interação, que ministramos juntos no Curso de Design Digital da PUCPR, nós propomos aos estudantes desenvolver projetos à partir da conscientização das opressões que eles estão sujeitos no cotidiano. Numa das atividades, pedimos aos estudantes que registrassem as pressões vividas no período de uma semana. Ao final de cada dia, eles criavam um modelo com massa de modelar expressando a pressão e guardavam no organizador de remédios. Ao final da semana, os modelos foram comparados e discutidos para encontrar padrões. Na disciplina Design de Interação, mostramos projetos de vestíveis que tratam o corpo não só como uma fonte de dados, mas como um maneira de existir na sociedade. O capuz para pessoas que não gostam de ser espiadas enquanto usam o computador criado por Joe Malia em 2004 é um exemplo paradigmático. Aqui a pessoa restringe seu campo de visão para garantir sua privacidade na utilização do computador. Indiretamente, o capuz comunica a relação íntima entre corpo e computador, uma relação que existe mesmo que a pessoa não vista o capuz. O capuz exagera a restrição do campo de visão e individualização resultante do uso intensivo da Computação Pessoal. Esse projeto pode ser considerado um exemplo de Design Crítico, ou seja, um projeto com foco na crítica social e reflexão. Um projeto mais recente que levanta condicionamentos contemporâneos é o Embodied Suffering, um conjunto de luvas eletrônicas que permitem sentir a ansiedade que uma outra pessoa sente. Ao final da interação, os dados biométricos são impressos em 3D em um objeto que deve ser trocado entre os usuários, funcionando como uma espécie de souvenir daquele momento. O projeto foi desenvolvido por Fernando Obieta, Gabriel Bach e Nadine Prigann no curso de Embodied Interaction da Universidade de Artes de Zurique em 2017. Numa linha similar, Ava Aghakouchak e Maria Paneta desenvolveram uma série de vestíveis chamada Sarotis. Cada vestível é composto por um soft robot feito de silicone que enche de ar ou líquido e transmite uma sensação suave de toque à pele humana. Os vestíveis exploram maneiras de perceber dados computacionais através do tato. Uma aplicação de Sarotis é uma navegação tátil por espaços virtuais para deficientes visuais, que podem perceber distâncias virtuais através do toque suave dos robôs. No Brasil, vestíveis assim podem parecer estranhos, porém, em 2011, o Orkut fez uma campanha sobre um brinco que esquentava quando outras pessoas acessam o perfil do usuário. O Earkut, como foi chamado, era um projeto fictício, uma brincadeira de primeiro de abril, porém, despertou o interesse de milhares de pessoas. Há alguns anos antes, minha estudante de Design da Unisul Jordana Schulka já havia criado um vestível muito parecido, que na época chamamos de Brinco do Orkut. Uma diferença fundamental é que o brinco iria esquentar quando o nome da pessoa fosse mencionada nos recados dos amigos, realizando na prática a crença popular de que a orelha esquenta quando outras pessoas falam de você por trás. Em 2016, Caroline Nohama e Erik Kato desenvolveram como parte de seu TCC em Design Digital da PUCPR uma jaqueta com LEDs para ciclistas. O ciclista levantava o braço indicando conversão e a jaqueta brilhava do lado correspondente. Para criar essa função, os estudantes utilizaram um método chamado Fantasia Guiada e para prototipar a jaqueta, utilizaram a placa Arduino. Uma técnica que utilizamos com nossos estudantes para criar interações com o corpo consciente é o Bodystorming do Oprimido. Trata-se de uma mistura de Bodystorming (técnica de criação de interações que utiliza o corpo) com Teatro do Oprimido (que contribui para a conscientização de condicionamentos e liberdades do corpo). Os estudantes improvisam a interação utilizando seus corpos como tecnologias. Na foto temos uma estudante representando o algoritmo de correção de operações embutido dentro do óculos de realidade aumentada de um operário numa fábrica de equipamentos eletrônicos. O Bodystorming do Oprimido serve para investigar a dimensão humana (e opressiva) da interação que passaria desapercebida numa interface cognitivista. Na prática de projeto, a corporeidade e alteridade da interação podem ser consideradas através de alguns formatos muito simples de projeto, como o storyboard. Contar uma história com figuras humanas, ambientes e tecnologias permite desenvolver cenários com detalhamento suficiente sobre o corpo. No projeto especulativo Nike Golf, Peter Lew criou um cenário em que um jogador de golf pode analizar a precisão de suas tacadas utilizando um Apple Watch no pulso e um iPhone num tripé. Existem diversas relações espaciais importantes que a presença do corpo e das tecnologias físicas traz para o cenário. Storyboards não precisam ser bem desenhados, entretanto, para serem efetivos em seu propósito. Existem diversas ferramentas de desenho assistido que permite criar storyboards sem nenhuma habilidade de desenho, como o storyboardthat.com No exemplo da imagem, o cenário demonstra a relevância do Apple Watch no momento em que a pessoa se desconecta do computador, como por exemplo, quando vai ao banheiro. No Brasil, temos uma tradição que valeria à pena ser recuperada para criar interações: a Fotonovela. Ao invés de utilizar desenhos, são utilizadas fotos e balões de quadrinhos. A fotonovela permite que o corpo fale de maneira mais explícita até do que o desenho, exibindo nuances importantes como a sensualidade, postura, orientação e outros. Cenários de Computação Vestível que se propõem a oferecer experiências de alteridade podem ser projetadas através de fotonovelas, aproveitando-se da tradição brasileira de transformar o corpo em imagem. Observando a história do Design de Interação, cheguei à conclusão de que toda interação sempre surge de um corpo humano e sempre afeta outro corpo humano, mesmo que o afeto não seja síncrono ou proporcional. Sendo assim, o corpo humano deve sempre ser levado em consideração, mesmo quando não se tratar de um projeto de Computação Vestível. A Computação Vestível tem o potencial de deixar esse aspecto de interação mais visível e efetivo, porém, o afeto pode ser até mais sutil do que nos projetos da Cute Circuit, uma butique de wearables que propõe interações afetivas. A Hug Shirt (2002) é uma camisa que transmite abraços à distância: ela sente o toque de uma pessoa e imprime força sobre o corpo da outra pessoa conectada. O abraço também pode ser mútuo. A Computação Vestível deve, na minha opinião, proporcionar experiências de alteridade para as pessoas que interagem. Alteridade significa deixar ser transformado pelo outro, que pode, inclusive, ser a própria pessoa, porém, vista por uma perspectiva diferente. Um projeto de vestível que aplica esse princípio de maneira magistral é o Intimacy 2.0, do Studio Roosegaarde. Trata-se de um conjunto de roupas que se tornam transparentes na medida em que a pessoa interage mais nas redes sociais, revelando seu corpo físico através do corpo virtual. Made with Keynote Extractor.Comente este post

Shivani Bhargava is the CEO & Founder of TheRightMargin, a goal-driven writing app that helps you finish what you write. Bay Area born, Boston bred, Shivani has spent most of her professional life in health tech. After being the product manager of PatientsLikeMe in Cambridge, MA, she moved back to CA in 2014 and immediately caught the startup bug. CONNECT ONLINE: Website(s): https://www.therightmargin.com Twitter handle(s): @therightmargin @shivzb Facebook: https://business.facebook.com/therightmargin ___ GOT A QUESTION FOR KEVIN AND HIS GUESTS? CALL 281-809-WORD (9673)

Named one of Fast Company's 2017 Top 10 Most Innovative Companies in Biotech, PatientsLikeMe is on a mission to put patients first! Learn more about PatientsLikeMe from Liz Morgan, Director, Member Experiences. She answers questions on how the company is committed to helping patients live better. Then log onto PatientsLikeMe.com to join a network of over 500,000 people to share experiences, provide support, and track symptoms.Lupus is a life altering and challenging disease to live with. Lupus is a chronic, autoimmune disease that can damage any part of the body to include, but is not limited to skin, joints and/or life organs. According to the Lupus Foundation of America, Inc.* about 1.5 million people, worldwide, have a form of Lupus.-----Host Note: From the heart of experience, I am well aware of the related difficulties that come with living with Lupus. I was diagnosed with Lupus at the age of 16. At this time, Lupus was still a very curious disease. I was told that I would not live more than ten years after being diagnosed. Yet, life trials and errors prove that I am not dead yet! I am currently in the process of writing a memoir about combating Lupus. More research has enabled many Lupus patients to live fulfilling lives. ========================================­===Learning to live successfully with lupus.========================================­===**Click Below to SUBSCRIBE for More Videos:www.youtube.com/user/LupusLiar========================================­===**Click Below to Sign up for the FREE living with lupus tips via email:goo.gl/li06i0**FOLLOW, LIKE, TWEET, SHARE**Twitter: www.Twitter.com/TheLupusLiarFacebook: www.facebook.com/TheLupusLiarInstagram: www.Instagram/thelupusliarPinterest: www.Pinterest.com/thelupusliarWebsite: www.TheLupusLiar.com --- Support this podcast: https://anchor.fm/conversationswithlupus/support

Esther Dyson is perhaps one of the most coveted investors of our time….Not only does she have an impeccable track record (including investments in MeetUp, Evernote, Square, 23andMe, LinkedIn, Facebook, Startup Health, HealthLoop, Patients Like Me, and dozens of others), but her insatiable thirst to explore the impossible and the undiscovered makes her un-matched in her ability to identify opportunity where others do not. On this episode, we get into the mind of Esther’s core investment philosophy, explore the influences of her upbringing, and discuss her quest to make health profitable through her latest venture, Way to Wellville. We discuss why asking the right questions is key to solving the mysteries of business, why our health system is so broken, and what we can do to help course correct an industry that has repeatedly failed us. All this and more on today’s episode. Now, That’s Unusual. About Esther Dyson Esther Dyson is a Swiss-born American journalist, author, businesswoman, investor, commentator and philanthropist. She is a prominent angel investor focused on breakthrough startups in healthcare, government transparency, digital technology, biotechnology, and space. Esther Dyson is currently focusing her career on health as the Executive Founder of WaytoWellville, an initiative focused on investing in health as an asset. The goal is to build networks through community organizing to increase access to and use of beneficial services, activities and resources to improve the health of residents in five model communities. Ultimately, Dyson hopes to utilize big data to demonstrate the economic value of investing in health and affect large scale change. After graduating from Harvard with a BA in economics, Dyson began her career as a fact-checker for Forbes before heading to Wall Street where she worked as an analyst. This led to a partnership with Ben Rosen in the emerging personal computer and online world. She bought Rosen Research in 1983 and renamed it EDventure Holdings. After 25 years with the company, Dyson sold it and pursued an interest in angel investing and health care. Dyson is unmatched in her ability to identify opportunity where others do not, and she is currently on a mission to make health profitable. Key Interview Takeaways Ask good questions. Dyson credits her success to an ability to craft the right questions and listen to the answers with a truly open mind. She believes that her true education began after she finished college (where you learn about things people already know) and became a reporter, working to discover the things people didn’t already know. We must shift our focus from health care to health. Dyson argues that health care is expensive and remedial, a function of chasing after our health once we’ve already lost it, whereas health is the capacity of the human body and mind to renew itself. Zip code determines individual health more than any other factor. Too many Americans are born into an environment that destroys their health rather than building it. WaytoWellville seeks to transform the health ecosystem in five communities, providing a prototype to initiate large scale change. To affect change, people must be accountable for making it happen. Dyson contends that much like building a physical bridge, building a community that is conducive to health requires standards, workers, a budget, deliverables, etc. Meaning well is not enough. To overcome the challenge of personal accountability, peer groups must be led by members of their own community. A network of support at the neighborhood level is the only way to change behavior, thus WaytoWellville helps communities launch and run their own programs. If we invested in health rather than health care, costs would go down. Dyson is working to make the economic case for investing in programs aimed at providing health coaches to help people understand how to take care of themselves and their children long before they need an expensive high-end p...

For years, Dr. Richard Bedlack has hunted for a cure for ALS, a fatal degenerative disease.  And then one day he builds a website called ALS Untangled. That's when strange things start to happen. Reported by Peter Andrey Smith and Reply All producer Sruthi Pinnamaneni. Further Reading The ALS Untangled website Dr. Richard Bedlack’s ALS Reversals website The PatientsLikeMe website The ALS TDI website Nelda Buss wrote a book, You Can Walk, about her experience, and she originally appeared on Fox in 1992 Eric Valor’s website Angelina Fanous’s reporting on VICE and The New York Times Peter Andrey Smith’s website

Since an early age, Wang Jun has been fascinated with the fundamental philosophical question: What is life? The ex-CEO of Chinese genome sequencing giant BGI and founder of China's highest-valued precision health start-up iCarbonX now aims to help people answer that question for themselves. Wang entered Peking University, China's top university, at the age of 16 after achieving the highest college entrance exam score in his hometown of Dongtai county, in Jiangsu province. During the early 1990s, he pursued his interest in the fundamentals of intelligent life by studying artificial intelligence. In one experiment, he discovered that computers could actually figure out how a lady beetle maneuvers to catch food, exactly like it does in real life. Watch A Video As iCarbonX's Wang Jun Chats With China Money Network: But working at the dawn of the personalized computer era, it became clear to Wang that computers could not think like a human – at least not yet – with the kind of computer powers and digital data available back then. So Wang, born in 1976, turned his attention to another potential golden key to unlocking the secrets of life: Genomes. In 1999, after having studied artificial intelligence, computer science and biophysics, he participated in founding BGI, which represented China’s contribution to the US$3 billion Human Genome Project. While at BGI, Wang managed three rounds of fundraising of about US$1 billion and led the company's acquisition of a U.S. public company, Complete Genomics. He continued scientific research by participating in the effort to sequence and analyze the rice genome and the SARS (Severe Acute Respiratory Syndrome) virus. He left BGI in 2015 (though he remains a board member and shareholder) to start iCarbonX because he believes genes alone can't decode life. "If I eat more, I become fat. If I run marathons, the body reacts differently. But my genome remains the same," he said. iCarbonX’s goal is to help people understand and manage their lives better by combining genomics with every other health factor, including metabolites, bacteria and lifestyle choices, to create a digitalized form of life, an avatar or sorts, for everyone willing to pay at least US$30 for a basic product or much more for advanced solutions. "I can use this digitalized form of me to see how my body will react to a cup of coffee (or a drug or daily exercises), for example," he explained. To date, iCarbonX has invested US$400 million in seven companies to form a Digital Life Alliance, an information ecosystem designed to fulfill Wang's vision. Fives U.S. companies, SomaLogic, HealthTell, PatientsLikeMe, AOBiome, GALT, one Israeli company Imagu Vision and Chinese firm Tianjin Robustnique Corporation Ltd. each bring core technologies such as protein biomarker discovery, bacterial therapy and immunosignaturing to the alliance. iCarbonX is also launching its first product, a digital health management platform named Meum. It will provide different levels of life data and dozens of applications to users for better control of their well-being. With Chinese technology giant Tencent Holdongs Ltd. being iCarbonX's major investor, the company is also developing a product that will be available to over 800 million active users of Tencent's immensely popular Wechat app, Wang said. Wang's belief in the life-technology interface go beyond commercial concerns. He's convinced that a digitalized form of individuals could ultimately be able to live on in silicon form even after their carbon-based human bodies perish. He has declared such ambitions many times, openly and privately. It is too early to speculate on that, but there is at least one problem Wang faces trying to fulfill iCarbonX's commercial promise. The start-up achieved a US$1 billion valuation in a short six-months after being established, making it the fastest technology unicorn in the world.

Today - we release a new podcast to the Pharmacy Podcast Network dedicated to our patients. The Patient's Podcast, where the Voice of the Patient is the most important voice in healthcare.  Our host Kristy Sobel is a dynamic Entrepreneur and sufferer of chronic pain & Autonomic Neuropathy. Kristy writes: "I believe everyone is born with a talent. Some are blessed with more than one. It's not always clear what it is, so it begins with one foot in front of the other. With each challenge and task it becomes apparent. I've always been an out of the box thinker and somewhere along the way, I found my niche in the fashion world. I created something out of necessity that turned into a must have for busy women. One concept turned into many other wonderful branches. Once established, I created products for people with special needs. Then the bottom fell out of my life in an instant. Everything I built became meaningless. I was given 2 months to live. The decision to give-up or find a way to not just exist or survive but find the strength to become a live-r again. I found the expert I needed to beat this incurable illness. The expert lived in LA but was retiring, so he didn't want to get involved. With my life hanging in the balance, I bought a ticket and flew to LA and sat on his door step. I told him if I was going to die, he was going to watch. He decided to take me on. We put together the best of the best team of Drs. from all over the world. Drs. that deal strictly with modern medicine and other Drs. that practice out of the box medicine. Seven years later, I've become the trail blazer in beating the illness. By sharing my story it proves anything is possible as long as you never let anyone steal your "Hope". I want you to share my story with other to stop those who are contemplating surgery and bring awareness to atrocity that has occurred in the United States. We need help reaching others who had this surgery and are suffering with similar complications as I am. It's a must for them to be tested for Autonomic Neuropathy. It's a difficult illness to be diagnosed. We need funding for research and a law passed that All Artificial Disc's must be tracked in the human. As it stands right now in my medical records, the surgery was a success. The claims that artificial discs are successful is baseless and unfounded. We have no way of knowing how many people who has had this surgery and are suffering. It's my crusade to be the voice for thousands who had their lives taken as I have. I have the strength to not let my life be in vain."  Please reach out to the show and submit your story and help reach other's suffering with a serious disease or condition. PatientsPodcast@gmail.com  See omnystudio.com/listener for privacy information.

In Episode 41 I share 16 excellent online resources where you can obtain quality trusted information on any health topic that you can think of from Medicare to foot fungus. These are the best, hand-picked resources that I love, use and can stand behind. CLICK HERE for the PDF Checklist of the best online health & medical resources PLUS a bonus of 17 more great health resources. Medicare Resources medicare.gov The best jumping off site for obtaining the latest on Medicare is medicare.gov, which is the official us government website. It really does provides a wealth of information and tools for finding doctors, providers, hospitals, plans and suppliers. You can access all of your online forms including those for replacing Medicare cards, changes of address and of course applying for a particular program. callsamm.com Be sure to check out the Senior Advisors for Medicare and Medicaid website, SAMM for short, which is the brainchild of Diane Daniels, the national authority on Medicare, an author, podcaster, a Medicare consultant and a past guest on the essential boomer. Diane has over 10 years of health care experience and has created a community to provide the latest essential Medicare information.This is one my favorite resources for keeping up on the latest changes as well as a plethora of tips and valuable information that is very important for keeping you informed and up to date on your Medicare. Be sure to check out the free videos on Medicare. Do you still have questions regarding Medicare? Just shoot her an email to schedule a free consultation? Click Here for episode 25: Medicare – What You Need to Know Now – A Conversation With Diane Daniels Click Here for episode 39: The Big Changes to Medicare in 2016 with Diane Daniels Medicare Q & A Tool Another great resource is the Medicare Q&A tool located on the American Association of Retired People AARP website. This is a searchable database containing everything that you ever wanted to know about Medicare. You can search using a question or you can peruse questions by categories.The AARP site also has a very useful Medicare Summary Decoder that holds your hand through the process of figuring out what the hell your Medicare statement is all about. It can even help you to spot errors and even fraud on your Medicare account. Private Health Insurance The Henry J. Kaiser family Foundation Website An excellent source for up-to-date information on Health Insurance is The Henry J. Kaiser Family foundation website. The foundation is dedicated to providing the latest non-biased information on health insurance and global health policy. The website is fascinating and very detailed. Check out the consumer resources where they have an excellent video explaining health insurance… a Marketplace Calculator, Health Insurance quiz and health reform FAQs. healthinsurance.org healthinsurance.org contains a great set of tools for figuring out how much health insurance is going to cost you. You can obtain insurance quotes and therefore yes, they do sell insurance…so they have a horse in the race but whether you purchase through them or not, the site is a wealth of information on the present state of insurance. Health Networking Resources It can be very comforting and beneficial to communicate with other people who are dealing with the same health issues that you are. There are several excellent websites that provide this service. Some provide good old-fashioned message boards that make it very easy to exchange information online. Some of these also enable you to interact directly with health professionals, share and compare medical tests and to even provide valuable information that can be used in actual studies. PatientsLikeMe.com PatientsLikeMe.com is a free website where you can connect with other people from around the world who share your same health concerns. It was originally created in 2004 as a resource for people with ALS, Lou Gherigs disease, and has now expanded to cover patients with over 1200 health conditions. Patientslikeme has its own team of researchers from institutions such as Oxford University and Johns Hopkins University. You can compare treatments, symptoms and experiences with other people just like you. It's really very cool and informative. They also use the information on the site for research so you are really providing value to mankind via medical research. You can share as much or little information about yourself as you want to. You can meet people and join in on the conversations of others. This is really an excellent resource. Check it out. HealthBoards.com Healthboards.com is another free membership site where you can access hundreds of message boards where people post questions and have discussions surrounding hundreds of specific issues. There is a great section of the site called Drug Talk where you can find a plethora of information and discussions covering a comprehensive list of drugs from a to z. You can search by drug names or by the conditions that they treat. You can even create your own blog on the site to share your own experiences and information.  DailyStrength.org Would you like to join “…the largest and most comprehensive network of people sharing their knowledge, experiences and support?” than join dailystrength.org. It's an excellent resource for making friends, journaling, tracking goals, sharing photos and providing support for other members. There are over 500 support groups covering many different conditions. In this excellent website you can access hundreds of discussion boards, obtain expert advice and even find treatment reviews. And here too, You have complete control over what kind of personal information you want to share. This is another excellent resource, check it out. Inspire.com inspire.com is a valuable health resource for both patients AND care-givers. It covers hundreds of both common and rare conditions and has a very high level of user engagement. Their core principals state that “Inspire was created with the belief that patients and caregivers need a safe and secure place to support and connect with one another. We strive to be ethical and transparent, and we never forget that our community is built upon the trust of our members. We place the utmost value on this trust, and maintaining it is our highest priority.” This is a free membership site which contains many communities, which are groups that focus on a particular health interest. You can participate in the groups and also one on one with friends that you trust. The interface is easy to navigate and like the others, you have complete control over the information that is shared. Medical Information Websites There are several websites that provide reliable, unbiased and trustworthy medical and health information covering just any and every topic that may pique your interest. Let's take a closer look at a few of my favorites. The Mayo Clinic MayoClinic.org is an excellent resource for obtaining the latest and greatest medical information. It is owned by the Mayo Foundation for Medical Education and Research and is produced by more than 3,300 physicians, scientists and researchers from the Mayo clinic. Even if you aren't affiliated in any way with the hospital or school, you will still find this a very valuable resource. This site is very well organized and easy to use. You can drill down as deep as you want to on any particular topic. This site is set up for both the lay person and for medical professionals. MedLine Plus MedlinePlus is a website managed by the National Institute of Health. It boasts the world's largest medical library and is visited often by both consumers and health professionals. There is extensive information on prescription and non-prescription drugs, health information from the media and something that I love, links to thousands of clinical trials. It also has a lot of health & surgery video, tutorials and even games and quizzes. It is updated daily and there are no product or company endorsements and no advertising on the site. It is very easy and intuitive to navigate the site. You'll definitely want to bookmark this one. WebMD webmd.com is great site starting off point for any kind of health related research. It is site whose editorial staff include a medical team of over 100 nationwide doctors and health experts. WebMD provides their users with credible information, supportive communities and in-depth references, which I really like. I especially like the webMD symptom checker where it walks you through the process of diagnosis better than many doctors. American Association of Retired People - AARP The AARP website, as mentioned earlier, is also a great source for health and medical information. It has the latest in-depth information on just about every conceivable topic that may be interested to you from Health conditions & treatments, health insurance, healthy living to drugs and supplements. It's a wonderful resource. You can find an enormous amount of information, even if you're not a member. If you join than you have access to member discounts on insurance, the award winning AARP magazine and discounts on many products and services. Medical Research Resources Are you interested in keeping on top of the latest in medical research? PubMed Central, The New England Journal of Medicine and The Jama Network are the answer to your prayers.  PubMed Central is a free digital archive of bio-medical and life sciences journal literature. The New England Journal of Medicine publishes new medical research findings, review articles, and editorial opinion.  The Jama Network is the most widely circulated peer-reviewed medical journal in the world. The AARP website, as mentioned earlier, is also a great source for health and medical information. It has the latest in-depth information on just about every conceivable topic that may be interested to you from Health conditions & treatments, health insurance, healthy living to drugs and supplements. It's a wonderful resource. You can find an enormous amount of information, even if you're not a member. If you join than you have access to member discounts on insurance, the award winning AARP magazine and discounts on many products and services. Alternative and Holistic Medical Resources Are you interested in obtaining some alternative viewpoints and information for your healthcare? In my experience you really have to tread lightly when entering the land of holistic medicine. There is a lot of pseudo-science lurking in the shadows, but there is also some good information to be found. MedlinePlus has an excellent section on complementary and integrative medicine you should check out. What is integrative medicine? It is healing oriented medicine that includes the whole person, body, mind and spirit, including one's lifestyle. This site provides a common-sense look at alternative medicines and provides some good guidelines for determining what may work for you. The National Institute of Health and Human Services also has a website providing a ton of information on alternative and integrative health covering all the topics from A-Z and help with finding a practitioner. You can also try the aforementioned medical sites such as WebMD and MayoClinic.org, each of which has tons of information covering alternative, holistic and complementary medicine. Low Income Assistance BenefitsCheckup Are you, or someone you love, financially vulnerable and struggling to pay for medicine, insurance or food? If so, than benefitscheckup.org is a government sponsored website that you should definitely check out. Through interactive questions it helps you to identify benefit programs that may fit your particular situation. It is a free service of the National Council on Aging. You may be able to get financial assistance with medications, food, utilities, legal help, health care, housing, in-home services, taxes, transportation and employment training. NeedyMeds.org Needymeds.org is a wonderful non-profit organization dedicated to affordable healthcare for all. They maintain the needymeds.org website of free information on programs for people who cannot afford medications and healthcare. All of their information is available for free and without registration. Check out their website, it is packed with vital information and resources all focused on helping consumers obtain quality, low cost healthcare.

Today in FirstWord:

We’re joined by Kim Goodwin author of Designing for the digital age and UX executive at both PatientsLikeMe and Cooper. We dive into the merits of journey mapping. What it is and how it can be useful.

Participants in our discussion on person centred care in January agreed that a change in culture and better use of technology could benefit both patients and doctors. At the roundtable: Fiona Godlee (chair), editor in chief, The BMJ Tessa Richards, senior editor, patient partnership, The BMJ Rosamund Snow, patient editor, The BMJ Navjoyt Ladher, clinical editor, The BMJ Angela Coulter, director of global initiatives, Informed Medical Decisions Foundation (www.informedmedicaldecisions.org) Paul Wicks, vice president of innovation, PatientsLikeMe (www.patientslikeme.com) Michael Seres, founder, 11 Health (www.11health.com) Alf Collins, clinical associate in person centred care, Health Foundation (www.health.org.uk) Jeremy Taylor, chief executive, National Voices (www.nationalvoices.org.uk) Dave deBronkart, cochair, Society for Participatory Medicine (www.participatorymedicine.org) Amir Hannan, general practitioner and member of clinical commissioning group board Alexander Silverstein, past president, International Diabetes Federation's young leaders in diabetes project Paul Hodgkin, founder, Patient Opinion (www.patientopinion.org.uk) Ben Mearns, consultant in acute care and elderly medicine, Surrey and Sussex Healthcare NHS Trust Sara Riggare, PhD student in health informatics, Karolinska Institute Rupert Whitaker, founder, Tuke Institute (www.tukeinstitute.org) Stephen Leyshon (observer), DNV Healthcare

[intro music]   Hello, and welcome to Episode Twenty-two of Multiple Sclerosis Discovery, the podcast of the MS Discovery Forum. I’m your host, Dan Keller.   This week’s podcast features an interview with Dr. Paul Matthews about the Optimize project in the United Kingdom. But to begin, here’s a brief summary of some of the latest developments on the MS Discovery Forum at msdiscovery.org.   Some good news came from the pharmaceutical company Genzyme. On November 14th at 9 pm Eastern time, the FDA approved the drug alemtuzumab – trade name Lemtrada – for relapsing forms of MS. The FDA previously rejected the drug in 2013 due to concerns about study design and side effects. There is still some concern over safety, though, so the company is releasing it to only a limited number of patients. The prescription will also come with a host of other drugs to protect against harmful side effects. Researchers aren’t quite sure how the drug works, but it appears to target monocytes, T cells, and B cells.   Researchers announced a new mouse model for fatigue at the 2014 Society for Neuroscience meeting in Washington, D.C. The model works by enhancing expression of the pro-inflammatory cytokine, interleukin-1-beta. The model caused mice to reduce physical activity, without showing other signs of illness such as fever or anhedonia. Middle-aged and aged female mice were most affected by the treatment, whereas young mice showed no difference in signs of fatigue. The model gives credence to the idea that fatigue is not produced from dysfunction in the arousal system, but rather is a result of inflammation. The researchers said that they hoped the model will help illuminate the neurobiology of fatigue, the most common and debilitating symptom of MS.   If you would like to keep up with all things MSDF, please consider subscribing to our weekly newsletter. We keep our newsletter up-to-date with all of our news stories, blogs, and items from our professional and research resource sections. We’re also on Twitter; follow us at msdforum. And on Facebook, you can like us at facebook.com/ms discovery forum.   [transition music]   Now to the interview. Professor Paul Matthews is at Imperial College London in brain sciences. Last week he talked with MSDF about imaging in MS. This week we’re discussing his involvement in a UK-based project intended to optimize and personalize MS treatment.   Interviewer – Dan Keller Welcome, Professor Matthews. You’re participating in the Optimize project in the UK. Can you tell me about that?   Interviewee – Paul Matthews Well, thanks, Dan. Optimize has been an exciting journey and we’re still at the early stages, but let me tell you a little bit about it. Over three years ago, a number of us got together to discuss what the barriers to development of stratified or personalized medicine for multiple sclerosis was. We all recognized what the potential could be if we could really figure out how to target medicines to responders, we would have a way of most appropriately staging the introduction of different medicines across patient populations, not exposing people who didn’t need them to drugs of higher risk and insuring that those who did need them got them early. This is a particular problem in the United Kingdom where there is a much more formal process for progressing from first-line DMTs to more powerful agents. And, in fact, there’s also – dare I say it – I mean, a frank therapeutic nihilism and a surprisingly small number of MS patients receive treatment because of the perceived lack of benefit to many of these first-line therapies.   Now how to change this. I think what we realized is that we need to have much more granular data on the characteristics of patients being treated and how they fared after their treatment over the long-term. The data provided within the usual clinical context is not only limited, but it ends up being rather patchy over time. In order to enable that, we needed tools that would both collect data and incentivize collection of complete data of high quality. Now a note about this. We all know how to do this within the context of clinical trials, but it’s hugely expensive; it’s expensive because there are multiple people always involved to crosscheck that the data is completely acquired in each paper, and secondarily, there are audit procedures in place in retrospect to insure that this is being done. This really isn’t feasible in routine clinical practice.   A colleague of mine, Rory Collins, who has specialized in setting up very large-scale clinical trials in areas like China and India, has shown how very simple electronic tools can help both insure that data is acquired completely and that there is an electronic audit trail to follow-up on data that isn’t. What they showed is that by creating simple electronic questionnaires that wouldn’t let the questionnaire be closed unless data of an appropriate type was entered in the field, and then automatically interrogating the data for quality from center to center and following up where there were potential lapses, one could begin to incentivize acquisition of the right data and actually make it flow faster.   So how could we make this happen within the MS space in the UK? Well, what we realized is that the toolkits were all there. The EU IMI program already has funded my colleague, Yike Guo, who’s head of the Imperial College Data Science Institute, to create a tool built around a platform called eTRIKS. This is a data management environment that allows links to apps or iPads or any other peripheral electronic tool for very powerful distributed data capture. We then, in gathering together a number of stakeholder meetings which involved people with MS, the MS societies, a number of industry representatives, and what I’m really pleased to say is leads from fully 18 of the major MS centers across the United Kingdom pretty much ringing the country, together created the vision of building such an electronic tool, distributing the types of input devices across the different centers, and beginning to create a database that could be held centrally or in a distributed fashion using all the new tricks of modern IT.   The first thing is acquiring the data, the second is doing useful with it. The second thing that’s rather neat about the eTRIKS platform is that we have shown how it can be built to allow different levels of access, so that there can be access by high-level users who get to see the whole dataset, but also by specialized users who might want to see only a part of it – like a doctor interrogating it for his or her patient – or, importantly, a person with MS interrogating it to see how the data that they have entered stands relative to that that’s entered across the country by all patients; it allows people with MS to begin to gauge how they’re doing relative to others with their disease.   Now, I think the latter point is worth building on, because I think all of us have been hugely impressed by the power of sites like Patients Like Me to engage people with the disease in the dialog about their disease and make them full participants in capturing data information. With this kind of distributed data platform where doctors and people with MS can enter data whenever and wherever they are to a central database which can organize it and allow it then to be interrogated as needed, means that we can begin to think about asking patients to enter data on the fly from home. Why is this important? Well, this actually completely transforms the way in which we understand the disease, it really gives us a much deeper sense of the patient experience. Rather than sampling a patient once every month or once every six months, we can actually capture how they’re doing through a day. And if we add to this some extra sensor technologies – say, for example, about movement – we can literally do this from moment to moment.   So the vision thus is that if we can use these modern IT tools to capture data from distributed sources – from doctors using iPads, from patients using apps, from sensors that people with MS wear – we can capture data in a central resource that can be distributed to those for the purposes that they need it in near real-time, and in turn provide a common environment for its analysis. I think it’s exciting. Now we’re at the early stages, the basic tools have been designed, we’re starting to build the sensor technology. And our genuine hope is with the completion of the first set of agreements with one of the companies who’s been the first to really take a plunge with us, we’re going to be able to create a beta form of the tool in 6-9 months.   Now before closing, I do want to add one thing. This is an exciting vision but the notion of building a database is hardly a new one and many people have had it. There is something that’s special about this vision and it’s the thing that I’m most proud of that’s come together from all of these stakeholders. It’s the vision of creating a database that will be an open database; open to all researchers once it’s built, not held privately by those who built it. And I think this is what could become a game-changer. Moreover, we see that the tools that we’re building in order to create this – the IT tools, the distributed apps, and so on – are tools that the community should own and should be able to improve on. So our intention is fully, as this program develops, to release a software for open-access use as well as the data. Our hope is that even if this doesn’t provide the solution of the future, it will begin to incentivize this kind of practice where we all share this important data to work together to find solutions to this disease.   MSDF Besides collecting MS-specific data, will it also look at general health and comorbidities to see how that affects outcomes?   Dr. Matthews No. That’s a really good question. Like so many doctors now, we’re very much focused on the progressive forms of the disease. Our belief is that comorbidities make major contributions to this, and that by influencing these comorbidities we may have the biggest short-term impact on our patients’ lives. So one of the advantages of a big data capture tool is that we can capture data on all of the other disorders that afflict people with MS, as well, and begin with, again, greater granularity because of contributions from people with as well as their doctors to look at this in ways that wonderful databases like NARCOMS haven’t been able to do. This is an important task for the future and one that we really want to grasp. We’re hoping with further funding to be able to link this to bioresources, as well, and the ability to access a patient’s fluid samples for Omics analyses certainly can add greatly to this.   MSDF Very good, I appreciate it.   Dr. Matthews You’re welcome, Dan, it’s been good speaking to you.   [transition music]   Thank you for listening to Episode Twenty-two of Multiple Sclerosis Discovery. This podcast was produced by the MS Discovery Forum, MSDF, the premier source of independent news and information on MS research. MSDF’s executive editor is Robert Finn. Msdiscovery.org is part of the non-profit Accelerated Cure Project for Multiple Sclerosis. Robert McBurney is our President and CEO, and Hollie Schmidt is vice president of scientific operations.   Msdiscovery.org aims to focus attention on what is known and not yet known about the causes of MS and related conditions, their pathological mechanisms, and potential ways to intervene. By communicating this information in a way that builds bridges among different disciplines, we hope to open new routes toward significant clinical advances.   We’re interested in your opinions. Please join the discussion on one of our online forums or send comments, criticisms, and suggestions to editor@msdiscovery.org.    [outro music]  

Jamie Heywood is a true leader in health innovation. An MIT-trained mechanical engineer, Jamie founded PatientsLikeMe after his 29 year old brother was diagnosed with Motor Neuron Disease/Amylotrophic Lateral Sclerosis. Described by CNNMoney as one of the 15 companies that will change the world, PatientsLikeMe helps improve lives through a real time research platform that advances medicine. Jamie also founded and served as CEO of the ALS Therapy Development Institute, the world's first non-profit biotechnology company and the world's largest and most comprehensive ALS research program. In this interview, Jamie discusses numerous critical topics in health such as signal and phenotype, and of course the importance of patients and data driving improved health delivery.    

Learn about groundbreaking research on the power of the placebo and how a platform called PatientsLikeMe puts health outcomes in patients’ hands. Also: weighing the pros and cons of making foundation proposals public to help ideas spread.

Speaker: Kim Goodwin If you want a team to see the world through users' eyes, there's nothing quite as powerful as involving them in ethnographic field studies. However, teams can still struggle with translating their field experience into product features and design decisions. Journey maps help teams structure and share field data, identify opportunities, and determine what kinds of tools and information to offer and when.The talk is illustrated with field data and a map of the patient journey through serious illness, based on recent work with PatientsLikeMe.com.

Kate Brigham is the Patient Experience Manager at PatientsLikeMe. Rather than focusing solely on forums and discussion, she has helped create an environment that encourages sharing amongst the patients. In this podcast, Kate talks to Jared Spool about how PatientsLikeMe uses data visualizations to help create the level of understanding within the community.

Guest: James Heywood Host: Bruce Japsen For over a decade, patients have been turning to the Internet for health information and support. At least one new online venture gives patients the opportunity to access data about medications and therapies and their effects and outcomes. But this isn't clinical trial data. This is detailed, highly quantified, "real-world" data that patients put on the social networking site Patients Like Me about themselves, in order to connect with others who share their disease and learn from their experiences. Co-founder and chairman Jamie Heywood, a graduate of MIT, talks to host Bruce Japsen about privacy, doctor-patient communication, conflict of interest, and the potential effect on pharmaceutical development of giving patients the opportunity to review their treatments.