The Global Genes RARE Advocacy Summit in September 2023 provided a forum for me to talk, for the first time, about my upcoming book and how rare disease communities have been a key part of my professional life. Here’s a set of questions that Sravanthi Meka of Global Genes asked me in advance of the meeting: […]
Seekers
Wow! How? Patient-Led Research
A scientific journal article written primarily by patients about their health condition has been downloaded over a million times. We reached this milestone after years of activism, advocacy, and demands for justice. The internet supercharged everyone’s ability to connect with information and with each other. The crucible of the pandemic then forced us into new […]
Wow! How? Drug Interactions
This is a cross-post from my LinkedIn newsletter. Feel free to join the conversation there or post your thoughts in the comments below. People who connect with health peers are able to pool knowledge, track data, and disseminate what they learn. For some, it’s the difference between life and death. For example, Peggy, a woman […]
Wow! How? Diagnosis
“Anne” is a mother I met in my fieldwork who was happy to share her story, but not her name. Her son had become sick very suddenly, complaining of a combination of symptoms that were difficult to pinpoint. Anne took him from one specialist to another, who performed test after test, but they could find […]
Patient-led innovation
Update: Here’s a link to the list I created based on the comments gathered here and on Twitter and LinkedIn. I am curating a list of organizations that are putting patient-led innovation to work. What follows is an incomplete list — please help me by sharing YOUR favorite peer-to-peer communities in the comments below. Extra […]
Seekers go out on the hunt
As I’ve shared in previous posts, I’m writing a book for MIT Press about the key role that peer health advice plays at every level of our health care system. The people I’m describing in my book do not wait to be invited to create opportunities for positive change. They seize opportunities to take action. They reject […]
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