Banyan Grove Health Collective
@banyangrove.bsky.social
Banyan Grove Health Collective is a patient-owned health data cooperative for the multiple myeloma community. Patients whose care produces myeloma data can decide, collectively, how that data is used to advance research and improve outcomes.
Health systems, registries, and research programs pool patients' records every day, on their own terms. We ask what happens when patients bring their own copies together and decide, collectively, how they're used. openwafers.substack.com/p/the-whole-...
#myeloma #MGUS #healthdata #coop
#myeloma #MGUS #healthdata #coop
The Whole Record
Hospitals, registries and research programs pool health records every day. Patients could build a commons of their own.
openwafers.substack.com
September 19, 2026 at 3:09 PM
Health systems, registries, and research programs pool patients' records every day, on their own terms. We ask what happens when patients bring their own copies together and decide, collectively, how they're used. openwafers.substack.com/p/the-whole-...
#myeloma #MGUS #healthdata #coop
#myeloma #MGUS #healthdata #coop
Medicine is in a golden age of treatment, built on a data economy where patient records are sold to drugmakers, with no say or share for the people who generate them. Banyan Grove's founder makes the case for a cooperative patients own. openwafers.substack.com/p/the-gilded...
The Gilded Age of Health Data
Medicine's golden age runs on a data economy gold rush
openwafers.substack.com
September 13, 2026 at 9:36 PM
Medicine is in a golden age of treatment, built on a data economy where patient records are sold to drugmakers, with no say or share for the people who generate them. Banyan Grove's founder makes the case for a cooperative patients own. openwafers.substack.com/p/the-gilded...