Patients Like Me is a health data-sharing platform that is transforming the way patients manage their own conditions. Sally Okun,  VP Advocacy, Policy & Patient Safety  at Patients Like Me visited Get Social Health  to talk about how they  want to change the way industry conducts research and improve patient care. The numbers of PatientsLikeMe.com are impressive: 

300,000 members
2,300+ conditions
50+ published research studies
25 million data points about disease

Numbers aside, Sally shared the Patients Like Me mission to help patients connect in a peer-to-peer network. Through their mutual sharing and support patients can also share their personal health data with researchers and pharma companies to help find health solutions and improve outcomes.

Patients Like Me: Sally Okun

Get Social Health is a program about social media and how it’s being used to help hospitals, medical practices, healthcare practitioners and patients connect and engage via social media. Get Social Health presents conversations with professionals actively working in the field and provides real-life examples of healthcare social media in action. You'll hear how Facebook, YouTube, Instagram, Pinterest, LinkedIn, Twitter and other social media platforms are being used to build community, educate and inform.

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Today’s on Get Social Health we’re talking about a project called My MG Sole. It's new collective art project designed specifically for people with Myasthenia Gravis, a rare autoimmune condition. The goal of the project is to help people in the MG community defy social distancing by uniting as a community online. In this time of intense social distancing, the separation of those with chronic illnesses, like MG, from their family, friends and community - who understand what they may be experiencing - can feel more like extreme social isolation.  The project is sponsored by Argenx, (Are Gen X) a Boston based biotechnology company developing treatments for severe autoimmune diseases. With me here today are Annalise Hammerlund, an Expressive Arts Therapist and Mental Health Counselor from Grand Rapids, Michigan. Also joining the podcast is Susan Woolner. She is the Neuroscience Patient and Caregiver Support and Community Manager for Mercy Health Hauenstein Neurosciences

My MG Sole Project

For all my Digital Health listeners, I wanted to share this interview with Jen Goldsack of the DiMe Society from the "People Always, Patients Sometimes" podcast. This podcast is a production of Spencer Health Solutions (full disclosure: my day-job!). Our podcast focuses on the innovators, thought leaders and patient influencers who are demanding change now in clinical trials The Digital Medicine Society is a group of individuals who are committed to innovating and transforming how digital apps, medical devices, software and processes can positively impact healthcare and clinical trials. Since Jen handles all my questions so well, it didn't make sense to repeat the same interview for Get Social Health. Here is the interview and transcript from my interview with Jen Goldsack about the DiMe Society on the "People Always, Patients Sometimes" podcast. The DiMe Society – Jen Goldsack  It’s time to discuss the digitalization and democratization of medicine so we invited Jennifer Goldsack to join us on the “People Always, Patients Sometimes” podcast.  Jennifer is the interim executive director of the DiMe Society, pronounced like the coin, an abbreviation of the Digital Medicine Society.  In our discussion, Jennifer spoke about the “trans-disciplinary nature of digital medicine as a field” and how, without professionals from every field at the table, the healthcare community will make mistakes and under-deliver on possible treatments for the individual.  As a nonprofit, Jennifer explained that “we do welcome all comers” at the DiMe Society – unlike other organizations, the DiMe Society charges individuals only $50 for membership, creating a low barrier of entry and ensuring accessibility to everyone. The DiMe Society was created with the mission to facilitate interdisciplinary collaboration between professionals within the global healthcare and technology communities in their research, teaching, and promotion of best practices in medicine.  The DiMe Society believes that everyone has something to contribute to the advancement of medicine, from white-hat hackers, engineers, and clinicians to citizen scientists.  Founded earlier this year, the DiMe Society already has around 700 members from 24 countries after only 5 months of opening their doors. To learn more about how Jennifer and the DiMe Society cultivate collaboration in the field of digital medicine, click on the link and listen to this week’s episode of People Always, Patients Sometimes, hosted by Janet Kennedy.   

The Digital Medicine Society

Health literacy is a relatively new term that is getting a lot of attention, but what does it mean? Does it have to do with reading ability or reading comprehension? Is it the responsibility of the healthcare provider or the patient? October is Health Literacy Month, so we're going to learn more about the meaning of health literacy from Lori Hall, director of global health literacy for Eli Lilly on Get Social Health. On the start of Lori's career: "In my career in nursing, I started out in the newborn intensive care unit. It was a wonderful opportunity to make a difference every day for patients and parents have these tiny little newborns. Although I didn't know about health literacy or health education then, I think it really had a strong presence even in the mid-eighties when I started my career. And that's been a common thread throughout the roles that I've had in healthcare. I look back at that common thread often now and recognize how I've been able to pull something from each of those experiences. That served me really well today in my role as the advisor of global health literacy." More information:  Health Literacy - Extruded Cornstarch Emulsifier?  Health Literacy - Medical Information  Health Literacy Month  Lilly Trials - Word of the Day  Roundtable on Health Literacy Contact Lori LinkedIn

Patients Like Me: Sally Okun

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