Our Strategy
The thinking behind the cooperative.
Banyan Grove is built on deep research into health data governance, cooperative models, and the myeloma patient community. This page shares how we think about the cooperative's direction, its financial trajectory, and the field it operates in.
Founding members receive access to the complete business plan, financial model, and strategy documents.
Vision
Where we're going.
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.
Five strategic aspirations
Prove that democratic data relations produce better research outcomes. This is a testable claim. If the cooperative's data produces studies with better patient-reported outcomes, more complete longitudinal records, and stronger consent documentation than comparable datasets, the claim is validated.
Build a durable, independent, and participatory institution. The three-layer architecture, the formation of a General Assembly, the election of a Data Ethics Review Board, the engagement of formation counsel, the establishment of bylaws: these are acts of institution-building.
Make the cooperative indispensable to members' myeloma journeys. Every member should experience Banyan Grove as something that makes their journey with myeloma measurably better: through research contribution, tools, community, governance, or economic return.
Create replicable infrastructure for patient-governed data cooperatives. Open-source the technology. Document the governance. Publish the legal architecture. When the next disease community wants to build their own cooperative, the blueprint exists.
Advance myeloma research toward better outcomes and a cure. This is the cooperative's primary return on investment. Every other aspiration serves this one. The journey toward a cure is the thread connecting tools, data, governance, and community into a coherent purpose.
Business model
Four patterns working together.
The cooperative combines four revenue and engagement patterns. Each serves a different function. Together they create a financially sustainable institution.
Cooperative ownership
Members own the entity, govern its decisions, and share in its economic surplus. The $42 buy-in creates a legal ownership stake. Surplus returns to members as patronage dividends.
Data licensing
The cooperative's primary revenue source. Researchers and institutions pay to access curated, consent-governed patient data through a secure research environment. The data carries governance provenance that commercial aggregators can't match: documented consent chains, ethics board approval, and a patient community engaged in the research their data supports.
Two-sided platform
Members receive tools, governance, and research connection. Researchers access curated data and pay licensing fees. Each side's value increases with the other's participation. An education mission connects both: helping members understand the research their data powers.
Tools-first engagement
Members start with useful health tools at no additional cost. Governance rights come with membership. The cooperative earns revenue from researchers, not from patients. Patients are the owners and stewards, not the product.
Positioning
The empty quadrant.
When 17 organizations in the health data field are scored on two dimensions (patient governance and data value return, each 1 to 5), a consistent pattern appears. Advocacy organizations like MMRF score moderately on value return (they fund research) but low on governance (patients have no vote). Patient platforms like HealthTree score higher on tools and transparency but haven't achieved multi-dimensional value return. Commercial aggregators extract enormous value but return nothing to patients.
The upper-right quadrant, where strong governance and strong value return combine, is empty. The cooperative is designed to occupy it.
Credit before critique
Incredible advances have been made through the health data domain. We acknowledge and are deeply grateful for that progress.
| Organization | What they achieved | Where they stop | What we add |
|---|---|---|---|
| MMRF | $600M+ raised, 15 drugs to market, CoMMpass genomic dataset | No patient governance of data. Board-controlled research agenda. | Democratic governance. Patient-directed research. Patronage dividends. |
| HealthTree | 14,000+ data contributors, 7,300+ health system connections | Board-driven. No member voting. No formal data governance. | One-member-one-vote. DERB reviews every request. Dynamic consent. |
| Real Patients (Savvy) | 60,000+ members, PBC-LCA structure, patient advisory services | No disease focus. No data aggregation or licensing. | Disease-specific depth. Data licensing revenue. Longitudinal data. |
| MIDATA | Cooperative governance, open-source platform, Swiss operation since 2015 | No disease focus. Small scale. Grant-dependent after a decade. | Disease-specific engagement. Revenue diversification. Federation path. |
Governance
Patients have a democratic say in who accesses the cooperative's data, what research it supports, and how the value it creates flows back to the community. One member, one vote. An elected Data Ethics Review Board evaluates every research access request. The General Assembly sets the cooperative's direction.
Value return across every dimension
Research contribution leads: your data powers studies that produce better outcomes for patients like you. Then tools that help you navigate your journey. Community that connects you with people who understand it. Governance that gives you ownership and voice. And economic return through patronage dividends when data licensing generates revenue.
Institutional durability
The PBC-LCA legal form guarantees patient majority control. The three-layer architecture (cooperative, foundation, data trust) protects against mission drift, acquisition, and founder dependency. Each layer has a specific job. Together, they create an institution that endures because it was designed to.
Financial trajectory
The path to sustainability.
Year 1 operates at a planned deficit. That's deliberate, budgeted, and bridged by foundation grants and cooperative development capital.
The cooperative's revenue comes primarily from data licensing: researchers and institutions pay to access curated, consent-governed patient data. As membership grows and the dataset deepens, licensing revenue grows with it. Foundation grants, member buy-ins, and research partnership awards provide additional revenue streams.
Break-even is projected in the second year of operation under mid-range assumptions. By Year 3, the cooperative targets a critical governance commitment: no single revenue source exceeding 40% of total revenue. This prevents the concentration risk that has constrained or closed other organizations in this space.
The three-layer architecture (cooperative earning data licensing, foundation receiving grants, data trust funded by management fee) distributes both revenue and risk.
Roadmap
Growth with discipline.
The cooperative doesn't expand until it's earned the right to. Go/no-go criteria at each phase gate require proof that the model works before the next step. "No-go" is a strategy, not a failure.
Phase 0
Pre-formation
Months -3 to 0
Fiscal sponsor engaged. Website live. Formation counsel research. Founding member waitlist growing.
Gate: 5 exit criteria
Fiscal sponsor signed
Formation counsel engaged
100+ on founding waitlist
$50K+ startup capital committed
At least one grant submitted
Phase 1
Founding
Months 0 to 12
PBC-LCA formed. 500 to 1,000 founding members from the under-45 cohort. Core tools and governance launched. First General Assembly. First DERB elected.
Gate: 7 go/no-go criteria
350+ active members
30%+ contributing data
Data quality metrics baselined
GA held, DERB elected, 1 cycle complete
6+ months operating capital
Platform stable, 5+ health system connections
2+ researchers with formal interest
Board reviews at month 10. All minimums met: Phase 2 opens. 1 to 2 short: delayed transition (month 15 latest). 3+ short: Phase 1 extends with a revised plan presented to the General Assembly.
Phase 2
Myeloma expansion
Months 12 to 24
Open to all myeloma patients. 5,000 members. First data licensing agreements. First patronage dividend. Data trust established.
Gate: 7 criteria including revenue validation
2,500+ members
$25K+ data licensing revenue
At least 1 published study
No revenue source exceeding 50%
Phases 3 and 4
Federation
Months 24+
Adjacent blood cancer communities form their own cooperatives using open-source infrastructure. Multi-disease network with shared services and collective bargaining. One tree becomes a grove.
Foresight
Testing the strategy against uncertainty.
Foresight doesn't predict the future. It identifies the forces shaping it, builds coherent scenarios from the highest-impact uncertainties, and tests strategy against each scenario to find where it holds firm and where it might need to adapt.
Regulatory trajectory
Four scenarios built from two critical uncertainties: whether the US moves toward comprehensive patient data rights, and how quickly interoperability mandates reach full enforcement. The cooperative's architecture holds across all four. Base case: "Status Quo Plus." The cooperative was designed to provide democratic data relations without regulatory support. Favorable regulation is a tailwind, not a prerequisite.
Plumbing Without Purpose
Great infrastructure, no governance framework. Data flows freely; the cooperative competes on quality and provenance.
Open Flow
Comprehensive rights and mandates. The most favorable scenario. Competition may increase but the cooperative has a head start.
Status Quo Plus
Incremental improvement. The environment the cooperative was designed for. Democratic data relations without regulatory support.
Rights Without Rails
Patients have legal rights but uneven infrastructure. The cooperative's FHIR expertise becomes a differentiator.
Treatment trajectory
Four scenarios built from two uncertainties: how quickly immunotherapy produces functional cures, and whether advanced treatments are broadly accessible. Every scenario in which treatment improves is one in which the cooperative's data becomes more valuable. When the cure comes, the institution that contributed to it is still standing, still governing the data that made it possible.
Cure, Access Concentrated
Breakthroughs concentrated at 50 to 100 centers. The cooperative's data documents the disparity. PCORI's territory.
Cure, Broadly Accessible
60 to 70% sustained MRD negativity. The cooperative shifts to survivorship research. Success: the data helped get there.
Chronic, Concentrated
Persistent disease, persistent access barriers. The cooperative's tools become access differentiators.
Chronic, Broadly Accessible
The most likely near-term trajectory. Treatments improve, cure elusive. The cooperative's strongest proposition.
Risks
What could go wrong, and how we've planned for it.
Honest risk communication builds trust. Every organization faces risks. What matters is whether you've thought them through.
Grant dependency in Year 1
The planned deficit is budgeted and bridged. Five funder domains provide diversification from the start. By Year 3, no single revenue source should exceed 40% of total revenue.
Patient recruitment to critical mass
Tools-to-trust-to-governance sequencing. Lead with useful tools, not governance asks. Comparable cooperatives launched with small founding cohorts and scaled from tight communities.
Data quality and research value
FHIR-based data collection produces structured, standardized records. Quality protocols from launch. An engaged patient population produces higher-quality longitudinal data than passive registries.
Three-layer coordination costs
Stress-tested in the financial model across multiple scenarios. Fallback: PBC-LCA alone until funding supports the full three-layer architecture.
Technology adaptation
The cooperative adapts proven open-source infrastructure, not building from scratch. Adaptation is engineering, not invention. A technical lead joins in Phase 1 to lead the work.
Want to learn more?
We're happy to share more about the cooperative's strategy, business plan, or architecture with researchers, funders, potential partners, and anyone with a serious interest.
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