Our story
What a chemotherapy chair teaches you.
You learn patience. The infusion takes hours. The pump hums. Nurses move between patients with a calm that you eventually absorb. You have nowhere to be except here, in this chair, with this IV, while a drug that someone spent decades developing drips into your bloodstream.
You learn gratitude. Research made that drug. Patients before you contributed to the studies that proved it works. The treatment that's keeping you alive exists because of a chain of effort that stretches back further than you can see.
And you learn to ask questions. Like: what does the next 20 years look like for me? Who's studying long-term outcomes for patients diagnosed young? What happens to all the health data I'm generating, year after year, appointment after appointment? Who decides how it's used?
I was diagnosed with multiple myeloma at 32. Tandem transplant, years of chemotherapy, a daily pill I'll take for the foreseeable future. I'm in remission since late 2018, and I'm deeply grateful for the research that got me here.
When I went looking for studies about patients like me, young and facing decades of treatment, the research was thin. So I spent years studying how communities around the world build and govern their own digital tools, their own data, their own futures. I wanted to understand what works and what doesn't when ordinary people try to take the reins.
Everything I learned pointed in one direction: patients can govern the data they generate. They can shape the research it powers. They can own the infrastructure that makes it happen. It takes a specific kind of organization to make that real.
Banyan Grove is that organization. And I'd like you to help build it.
Who we serve
For myeloma patients, especially those diagnosed young.
192,000 people in the US live with multiple myeloma. 36,110 are diagnosed every year. Most are older. But a growing number are diagnosed under 45, and their journey is different: decades of treatment ahead, decades of generating health data, and almost no research focused on what that long path looks like.
The gap widens with every year of remission. A patient diagnosed at 40 who responds well to treatment will generate decades of lab results, treatment records, genomic data, outcomes data. Every year, the distance between the value that data creates and the say that patient has over it grows.
Banyan Grove starts here because this is where the need is most personal and the founder's knowledge runs deepest. The cooperative's long-term path leads through blood cancers broadly, then federation with other disease communities. One tree becomes a grove.
How we're structured
Three layers, each with a job.
Layer 1
The Cooperative
The core. Owned by patient-members. You vote on everything that matters: who accesses your data, what research gets funded, how value is shared. Colorado law guarantees your majority control.
Layer 2
The Foundation
Supports the cooperative with grants, donations, and research funding. It can access money the cooperative can't (tax-deductible donations, federal research grants). A separate entity, so no funder compromises the cooperative's independence.
Layer 3
The Data Trust
Established in Year 2. An independent fiduciary whose legal duty is to your data and your rights. Think of it as the referee: it makes sure everyone, including the cooperative's own leadership, plays by the rules you set.
Where we're going
The path ahead.
Banyan Grove is in its pre-formation phase. The cooperative doesn't exist as a legal entity yet. That's deliberate. We're building the research foundation, governance design, community, and tools before filing the paperwork.
Founding members join now. They help shape the governance, test the tools, and build the culture. When the cooperative formally incorporates as a Public Benefit Corporation under Colorado's Limited Cooperative Association statute, founding members are the first co-owners.
From there: tools launch, patient-directed data collection begins, research partnerships form, and the cooperative starts proving that democratic data relations work in cancer research. Proving it here proves it can work anywhere.
As a member and co-owner, you'll have access to the cooperative's full business planning and strategy materials as they develop.
The evidence
Why we believe this works.
Patient-owned cooperatives already work. Real Patients (formerly Savvy Cooperative) has grown to 60,000+ members. MIDATA in Switzerland has operated a health data cooperative since 2015. Stocksy proved cooperatives compete on quality, reaching $10.7M in revenue by Year 3.
60,000+
Real Patients members
Since 2015
MIDATA operating
$10.7M
Stocksy revenue, Year 3
No organization scores high on both patient governance and data value return. Large disease foundations excel at research but offer no democratic governance. Health data cooperatives implement governance but lack disease-specific depth. That empty quadrant is where Banyan Grove sits.
The myeloma field has done extraordinary work. MMRF has helped bring 15 drugs to market. HealthTree connects patients to 7,300+ health systems. We're building on that foundation by adding democratic governance of the data that makes it all possible.
The team
Who's building this.
Dhruv Deepak
Founder
Myeloma patient, diagnosed at 32. Tandem transplant, years of chemo, daily pills. In remission since late 2018.
Background in business strategy, technology consulting, and sociology. Spent years researching how communities around the world govern their own digital resources. Built Banyan Grove because he believed patients deserve a seat at the table: as owners and governors of the data they generate.
Board and advisory
Banyan Grove is in its founding phase. This section will grow to include the board of directors, advisory council, and key team members. Founding members help elect the first board.
Resources
The research behind the cooperative.
Banyan Grove is built on deep research into health data governance, cooperative models, and the myeloma patient community. These documents share what we've found and how it shaped the cooperative's design.
Cooperative Architecture
The full design document: how Banyan Grove is structured, why it's structured that way, and how it all fits together.
Coming soon
Health Data Governance Research
A scan of health data cooperatives, trusts, commons, and unions worldwide. What works, what doesn't, and what the cooperative builds on.
Coming soon
Myeloma Community Analysis
The myeloma patient community: who they are, what they need, and the case for starting here. Demographics, engagement patterns, and the under-45 cohort.
Coming soon
As a member and co-owner, you'll have full access to the cooperative's business plan, technology architecture, presentation materials, and strategy documents as they're completed.
Want to be part of this story?
Banyan Grove is looking for founding members who want to shape what comes next. Your voice, your vote, your cooperative.
Become a founding member