In the spirit of Public Q&A, I am sharing a question I received from someone who helps run outreach and support programs for a disease-focused nonprofit: “In your research did you learn about what mode and types of connecting teens preferred? Did any teens express wishes for something online that they couldn’t find in terms of connecting with peers?” Essentially, […]
peer-to-peer health care
Rare but not alone
Ashley Eakin, a filmmaker, is being brave and showing her real self online. She does it on behalf of the kids who share her rare condition so they can see themselves, in her image — a beautiful example of how the internet can be a bridge to hope and inclusion. Watch: When she mentions in […]
Building the evidence base for peer health advice
Imagine an intervention that produces results like these: One-third of those living with chronic conditions are now more likely to take necessary medications. The risk of admission to a neonatal ICU during first year of life reduced by 63%. People with with poorly-controlled diabetes were able to achieve a 1.1-point reduction in their HbA1c. Each […]
Rare Disease Day 2019
Today is Rare Disease Day, when we lift up the stories of the 300 million people who live with more than 6,000 rare conditions. This year’s theme focuses on bridging health and social care, alleviating the heavy burden on people who coordinate medical, social, and support services for themselves and their loved ones. The National […]
Public Q&A: Empowering people in their relationships with clinicians
In the spirit of public Q&A, I’m sharing an intriguing question I received recently from a community colleague. Check out my answer and then add your ideas and suggestions in the comments below. Do you know of any particularly good or interesting services to empower patients in their relationships with doctors, especially ones which involve […]
Well/Connected
Dr. Joe Kvedar interviewed me for his podcast, Well/Connected, and I thought I’d share footnotes for all the resources I mentioned. Key findings from the national survey of 14- to 22-year-olds focused on digital health and social media use, sponsored by Hopelab and Well Being Trust, which took a special look at people living with […]
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