Patient-Owned Health Data Cooperative
Your data, your research, your cooperative.
Banyan Grove is a patient-owned health data cooperative for the myeloma community. Take ownership of your health journey with tools built for you, a real voice in how your data shapes research, and a share of the value it creates.
Our vision
Myeloma patients govern the data they generate, share in the value it creates, and direct the research it powers, through an institution they own that's built to last.
Why it matters
What Banyan Grove offers.
For patients
Tools for your health journey. Control over your data. A vote on the cooperative's direction and operations. A dividend from licensing of your data.
"Help me understand what's happening with my health, give me a say in who uses my data, and make sure the research it powers addresses questions that matter to someone like me."
For researchers
Access to an engaged patient population. For every study: documented consent chains, ethics board approval, and a community that participates in the research their data supports.
"Give me access to high-quality, consented myeloma data with provenance strong enough for regulatory submissions, from patients engaged enough to produce longitudinal depth."
For supporters
Proof that democratic governance of health data is viable, sustainable, and replicable. Success in this domain builds the case for cooperatives overall.
"Show me that a model for democratic governance of health data can work."
"Prove that data cooperatives can succeed in a high-stakes regulated sector."
What we are
A health collective, owned by patients.
Every member gets a vote. On who accesses your data. On what research it supports. On how the value it creates comes back to you and your community.
This is yours to build.
Your data, your rules.
Dynamic consent means you choose which studies your data enters, and you can change your mind at any time. Your consent is a governed relationship between you, your data, and the researchers who want to use it.
Your voice, your vote.
One member, one vote. You help elect the board, shape the research agenda, and review every data access proposal. Your membership is ownership.
Research that comes back to you.
When studies use the collective's data, findings come back to members in plain language. You stay connected to the research your data supports.
Contributing to treatments and cures.
When research leads to better treatments on the road to a cure, your data played a role, and you had a say in how we got there.
How it works
Membership deepens at your pace.
There's no funnel, no required sequence. You start at the center with what's useful to you, and move outward as you're ready. Click a ring to explore each layer.
Center
Useful tools.
Treatment tracker, lab visualizer, peer matching, research library. These are yours the moment you join. No data contribution required. Answers the question that brought you here: what does this mean for me?
Second ring
Data contribution.
When you're ready, pull copies of your health records into a platform you own. Dynamic consent lets you choose, study by study, who accesses your data and for what purpose. The data relations dashboard makes it visible: who used your data, what they found, what value was created. Change your mind whenever you want. It's your right.
Third ring
Governance.
General Assembly, Data Ethics Review Board elections, research proposal evaluation. Vote on who accesses the collective's data. Elect the ethics board. Shape the research agenda. Run for the board yourself. Participate at whatever level feels right. The power is always yours.
Outer ring
Shared research purpose.
The reason the cooperative exists. Patient-aligned research toward better outcomes and a cure. Your data, your voice, and your participation all feed the research that matters to you. Findings come back in language you can use.
$42 one-time buy-in makes you a co-owner. If that's not possible right now, a fellow member or our foundation will sponsor your membership. You get the same ownership, the same vote, the same community. Either way, you're building this with us.
What you get
Tools that build into something bigger.
Membership starts with things that are useful to you right now. Over time, each layer connects to the next: tools build trust, trust enables data contribution, data contribution produces research value, and governance ensures that value flows back to you.
Start here
Useful tools.
Any data uploaded to these tools is private and expressly not shared with external parties; if your data is not actively linked (by you) to a specific study, it remains invisible.
When ready
Data contribution.
Choose who accesses what data and learn how it was used.
Your voice
Governance.
Participate in the running of the cooperative.
The purpose
Shared research purpose.
Your data, your voice, and your participation all feed the research that matters to you.
Who we are
Built by a patient, for patients.
Banyan Grove was started by a myeloma patient who spent years in treatment, then years studying how communities around the world govern their own health data. The cooperative comes from lived experience and the conviction that patients deserve to govern the data they generate, the research it supports, and the value it creates.
Dhruv Deepak
Founder
The invitation
We're building this together. It starts with you.
Banyan Grove is in its founding phase. We're looking for the first patients who want to own something: a cooperative where your data works for you, your voice shapes the research, and your membership puts you on the path to better treatments and, one day, a cure.
Founding members shape what this becomes: the tools, the governance, the research agenda, the community.
Become a founding member$42 one-time buy-in. If that's not possible right now, a fellow member or our foundation will sponsor you. Either way, you're building this with us.