Maneesh Juneja is a dynamic person, both in person and online, and I’m proud to call him a friend and community colleague. Unfortunately, he has been living with LongCovid, the long-term effects of the COVID-19 virus, for nearly 12 months. If you have not yet watched his recent Health Datapalooza keynote, now is your chance: […]
patient networks
Crazy, crazy, LongCovid, obvious
LongCovid is an extraordinary challenge to the human body. It’s been met with an extraordinary response from the human spirit. As I wrote in a previous post, we are watching patients, caregivers, clinicians, researchers, and policymakers move through the stages of peer-to-peer health innovation at a fast clip. Faster than I’ve ever seen in my […]
How connection can lead to change
In April, Harvard Business Review published my article, “How Chronic-Disease Patients Are Innovating Together Online.” Since then I’ve been collecting other stories about people gathering online to solve their own problems — an innovation pipeline powered by what I call peer-to-peer health care. Fortunately and unfortunately, there are many examples. People living with long-term effects […]
Patient-led research is a key element of pandemic response
On August 12, the Council of Medical Specialty Societies hosted the fifth webinar in their series focused on COVID-19 and clinical registries. If you missed it — or want to watch it again — here’s the video: Here, also, are the panelists’ slides and a collection of tweets posted in advance of and during the […]
Tracking the trackers
UPDATE: On August 12, I’ll moderate a discussion about prioritizing patient engagement and inclusion of patient-generated COVID-19 data in clinical registries. It is being offered free and open to the public. Read a preview post and register here for the webinar. Every day I see a new example of a survey or other tool to […]
Public Q&A: Patient registries
A community colleague asked for advice about how an organization can boost the signal for their patient registry. Recruitment levels are not what they expected and nowhere near what they need. I’m sharing what I wrote back so that others can chime in with their advice in the comments. First, look at what successful registries […]
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