Personal Health Record
HealthKey brings together every record from every provider into one complete, patient-owned health record — reconciled, searchable, and ready to work for you.
What HealthKey does
From fragmented data across a dozen providers to a single, verified, longitudinal record — owned entirely by you.
Connect records from hospitals, labs, specialists, and wearables. HealthKey ingests FHIR bundles and reconciles conflicts automatically.
Full support for genomic assay results, biomarker profiles, and lines of therapy — giving you a truly complete oncology record.
Our PatientInfo layer delivers instant eligibility screening against open clinical trials — no waiting, no manual forms.
Connect your wearable devices to bring continuous health signals into your record. Heart rate, sleep patterns, activity levels, blood oxygen, and more — all ingested, standardized, and stored alongside your clinical data in OMOP. Your wearables don't just track your health. Now they inform it.
Share your complete record with any provider, instantly. No fax machines. No CD-ROMs. Just a secure, permissioned link.
Your data is never sold. You decide who sees what, for how long. Revoke access at any time with a single click.
For Patients
Your health history is scattered across a dozen portals, printed summaries, and provider notes that never quite line up. HealthKey changes that.
We pull every record into one place, reconcile the conflicts, flag the gaps, and give you a single source of truth you can share with any provider on the planet.
Learn about the PHRAuthorize FHIR data pulls from hospitals and clinics — or upload records manually.
Conflicting data is flagged. Duplicates removed. Your record becomes coherent.
Share with clinicians, explore trial matches, or download your full OMOP record.
Our Mission
"Patients deserve to own the truth of their full health picture — not as a PDF export, but as a living, working record that acts on their behalf."
— HealthKey founding principle
The gap we're closing
HealthKey PHR
A complete, patient-owned longitudinal record — built on the world's most rigorous clinical data standard, and designed to actually work for you.
Core capabilities
HealthKey ingests FHIR R4 bundles from any EHR, hospital portal, or lab system. Our ETL pipeline — powered by OHDSI tools and our own PHRofile and PHRogram components — transforms raw records into a clean, standardized OMOP structure. Multiple providers, one coherent record.
When two providers disagree on a diagnosis, medication, or measurement, our PHResolution engine flags the conflict and presents it clearly. You decide what's correct — with supporting evidence from each source. No more silent data errors.
We go beyond standard OMOP with extensions for lines of therapy, TNM staging, genomic assay results, biomarker profiles (EGFR, BRCA1/2, PD-L1, HER2 and more), and ICD-O-3 histology. The most complete oncology record available.
Our PatientInfo layer collapses complex OMOP queries into instant eligibility screening. When a new trial opens that matches your profile, you know.
Track your treatment responses with clinical-grade metrics: Overall Response Rate, Complete & Partial Response, Progression-Free Survival, Overall Survival, and adverse event monitoring — all derived directly from your record.
Share your full record — or a curated subset — with any clinician or research team. Set expiry dates, revoke access instantly, and see exactly who viewed what. Your permissions, your terms.
Who it's for
The HealthKey PHR serves every stakeholder in the care journey — with the same underlying data powering different views.
Patients
Researchers
Clinicians
Join the waitlist
HealthKey is currently in early access. Join patients already on the platform.
How It Works
HealthKey's pipeline is built on the gold standard for clinical data — OMOP CDM — and designed to handle the messy reality of real-world health data.
Your journey
Sign up and verify your identity. We use bank-grade identity verification to ensure your record is unambiguously yours — protecting you and preventing data mixing.
Authorize HealthKey to pull data from your hospitals, GP surgeries, labs, and specialist clinics via secure FHIR connections. You can also upload records manually — PDFs, CDs, discharge summaries.
Our ETL pipeline ingests your FHIR bundles, maps all clinical concepts to standard OMOP vocabularies, and identifies conflicts. PHResolution flags anything that needs your review — you make the call.
Browse your complete longitudinal timeline. See trial matches update in real time. Track your outcomes. Share with providers. Export your data. Your record works for you, not the other way around.
HealthKey maintains live sync with connected providers. When a new lab result arrives or a prescription changes, your record updates — and your trial matches re-run automatically.
The technology underneath
We built HealthKey on the same standards that power global observational research — so your record isn't just useful today, it's future-proof.
Profiles your incoming FHIR bundles — identifying structure, gaps, and anomalies before a single byte touches your record.
Automatically generates the transformation scripts that map your source data to OMOP — cutting ETL time from weeks to minutes.
Detects conflicting or erroneous values post-import and surfaces them for patient-led reconciliation in a clear, guided interface.
Under the hood
The Observational Medical Outcomes Partnership Common Data Model is the global standard for clinical observational research. Your HealthKey record is stored in OMOP — meaning it's compatible with the entire OHDSI ecosystem and can be analyzed with tools used by researchers worldwide.
We've extended the standard schema with oncology and genomics fields validated with the OMOP architects — so your record is both standard-compliant and clinically complete.
Join the early access program and be among the first to have a truly complete health record.
Request AccessSecurity & Compliance
We don't treat security as a feature. It's the foundation every other part of HealthKey is built on.
Compliance
How we protect your data
All data is encrypted in transit using TLS 1.3 and at rest using AES-256. Your health record is never readable in plaintext — not by HealthKey staff, not by anyone.
You decide who can see your data, what they can see, and for how long. Every access grant is time-limited by default and revocable with a single action. We maintain a full, immutable audit trail.
We will never sell, licence, or share your personal health data with advertisers, insurers, or third parties without your explicit consent. Your record exists for you, not as a revenue stream.
Choose where your data is stored — UK, EU, or US regions. Your data never crosses jurisdictional boundaries without your explicit authorization. Enterprise plans support on-premises deployment.
We run on enterprise-grade cloud infrastructure with regular penetration testing, automated vulnerability scanning, and 24/7 anomaly detection. Our security team reviews findings within 24 hours.
In the unlikely event of a security incident, we commit to notifying affected users within 72 hours — ahead of regulatory requirements — with a clear explanation and remediation steps.
Questions?
Enterprise customers can request our full security documentation, SOC 2 report, and penetration testing summary under NDA.
Contact UsJoin the waitlist
HealthKey is currently in early access. Join patients and researchers already on the platform.
Our Story
Health data is fragmented, inaccessible, and routinely fails the patients who need it most. Clinical trial matches go unfound. Conflicts go unresolved. Histories get lost between providers.
HealthKey exists to fix that — starting with giving patients the complete, accurate record they've always deserved.
Our Mission
We believe a health record should reconcile conflicting information, import from every provider, serve as a foundation for clinical decision-making, and — above all — belong to the patient. Not the hospital. Not the insurer. Not us.
What we believe
Every product decision asks: does this give the patient more control, more clarity, or a better outcome? If the answer is no, we don't ship it.
We build on the standards — OMOP, FHIR, OHDSI — because interoperability isn't a feature, it's a responsibility. Shortcuts in clinical data cost lives.
You always know exactly what data we hold, who has seen it, and what it's used for. Our business model depends on trust, not data extraction.
Building the infrastructure for patient-owned health data is a decades-long project. We're not optimizing for the next quarter — we're building for the next generation of care.
We're hiring across engineering, clinical, and product. We're also always looking for research and clinical partners.
The Team
We're a team of engineers, clinicians, and data scientists who've spent careers working at the intersection of health and technology.
Our engineers have built clinical data pipelines for academic medical centers and pharma research networks. They know what production health data actually looks like.
Practising oncologists and clinical informaticists ensure our record captures what clinicians actually need — and that trial matching logic reflects real eligibility criteria.
Former academic researchers and pharma data scientists who understand the full lifecycle of evidence generation — from patient record to published outcome.
Join the waitlist
HealthKey is currently in early access. Join patients and researchers already on the platform.
Open Source
The schema behind every HealthKey record, and the engine that matches it to clinical trials, are published openly on GitHub. Read the code. Audit the rules. Contribute back.
Our Projects
CTOMOP defines what a precision-medicine patient record looks like. EXACT shows how it should be matched. Together, they form the open foundation beneath the HealthKey PHR.
A clinical-trial-ready superset of OMOP CDM v6.0.
CTOMOP extends the standard OMOP Common Data Model with oncology and genomics tables, a richer episode model for lines of therapy, and a denormalized PatientInfo projection of 266 eligibility-ready fields. Every computed field — therapy lines count, refractory status, measurable disease per IMWG, TP53 disruption, lymphocyte doubling time — is derived once, in one place, with auditable rules.
View on GitHubExplainable, precision clinical trial matching.
EXACT is a stateless matching engine that consumes a CTOMOP-aligned patient profile and a trials catalog, then returns a per-trial trace: every eligibility criterion shown as passed, failed, or indeterminate, with the exact patient field value and trial threshold behind each verdict. No opaque scores. Patients and navigators act on reasons.
View on GitHubWhy Open Source
The logic that decides whether a patient is eligible for a trial — or refractory to a therapy — should be inspectable by a human oncologist, not buried inside a vendor's binary. Every derivation rule in CTOMOP is in the open.
CTOMOP starts with multiple myeloma and is designed to grow. Adding a new disease — follicular lymphoma, CLL, the next blood cancer — is a matter of contributing computed fields, not waiting on a vendor roadmap.
If your record told you that you don't qualify for a trial, you should be able to see exactly which field and which threshold produced that answer. EXACT makes the verdict legible. The code makes it accountable.
How They Fit Together
A HealthKey patient record is an OMOP database with the CTOMOP extensions and a flattened PatientInfo table sitting alongside it. When a patient or their navigator asks "which trials am I eligible for?", PatientInfo is handed to EXACT along with a structured trials catalog. EXACT evaluates each trial's criteria, returns a per-criterion verdict, and explains every answer in terms of the patient's actual data. Nothing is persisted inside the matcher. Nothing is hidden inside a score. The patient model is open. The matching engine is open. The PHR built on top is what we sell.
Get Involved
Whether you're a clinician with a rule to suggest, a researcher with a new disease model in mind, or an engineer who wants to contribute — we'd love your help.
Get in Touch
Whether you're a patient, a clinician, a researcher, or a potential partner — we'd love to hear from you.
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Case Studies
See how CTOMOP and EXACT are powering production applications that connect cancer patients with the care they need.
AI-powered clinical trial matching for cancer patients — built entirely on CTOMOP and EXACT.
Read case study ↓
How a patient-built nonprofit assembled a complete, patient-owned health record for 14,000+ blood cancer patients.
Read case study ↓
Case Study
The first AI-powered clinical trial matching service built on an open, oncology-grade patient record — connecting cancer patients with potentially life-saving trials in minutes, not months.
The Problem
Historically, only 2% of cancer patients ever enroll in a clinical trial — not because trials don't exist, but because finding them is confusing, time-consuming, and opaque. Eligibility criteria are written in clinical language, spread across dozens of registries, and require detailed lab values that most patients don't know how to gather.
The result: patients who could benefit from cutting-edge treatments never hear about them, and trial sponsors struggle to hit enrollment targets.
The Solution
CancerBot is built entirely on HealthKey's two open-source properties — CTOMOP for patient data and EXACT for trial matching. Together they give patients a personalised, jargon-free answer to the question: which trials do I qualify for, and why?
Every patient's clinical history — labs, diagnoses, therapy lines, genomics, ECOG status, prior treatments — is stored in a CTOMOP-aligned OMOP record. 266 eligibility-ready fields, derived once, in one place, with auditable rules.
EXACT consumes each patient's CTOMOP profile and evaluates every eligibility criterion for every trial — returning a per-criterion trace showing exactly which criteria passed, failed, or couldn't be determined, with the specific patient value behind each verdict.
Results are presented in plain language. Patients see which trials match and precisely why — not an opaque score. A navigator reviews the matches and confirms understanding before any outreach.
How It Works
Sign up for free at app.cancerbot.org and answer structured questions about your diagnosis, labs, prior treatments, and current status. Your data is stored in CTOMOP format.
Your CTOMOP profile is run through EXACT's stateless matching engine against an up-to-date trials catalog. Every criterion is evaluated with a pass, fail, or indeterminate verdict.
You see your matched trials ranked and explained — each with the exact reason you qualify. No jargon, no guesswork.
A patient navigator reviews your matches with you, answers questions, and provides ongoing support through the enrollment process.
Supported Cancer Types
Built on HealthKey
CancerBot's founder Adam Blum, diagnosed with follicular lymphoma, experienced firsthand how broken the trial-finding process was. He built CancerBot on HealthKey's open infrastructure so the patient data model and matching engine could be audited, extended, and trusted.
CTOMOP's OMOP-aligned schema means every lab value, therapy line, and biomarker is stored consistently — no ad-hoc mappings, no one-off fields.
EXACT was built to show its work. Every eligibility verdict references the exact patient value and trial threshold — so patients and navigators can act on reasons, not scores.
Both CTOMOP and EXACT are published on GitHub. CancerBot's matching logic can be audited by patients, providers, and researchers — building the trust that clinical trial enrollment requires.
Case Study · Together We Care, Together We Cure
Turning a diagnosis into infrastructure — how HealthTree Foundation built a complete, patient-owned personal health record, and how HealthKey helped make cancer data work for the patient and for researchers.
A nonprofit innovation story spanning 2010–2026 — from a single myeloma patient to 14,000+ patients and 65,000+ research participants.
Executive Summary
HealthTree Foundation is a global nonprofit that exists to help people with blood cancer live longer and better — and to accelerate the search for a cure. It began in 2010 with Jenny Ahlstrom, a 43-year-old mother of six, diagnosed with multiple myeloma and given a prognosis measured in a few short years.
Rather than accept that the data needed to fight her disease was scattered, locked away, and inaccessible, Jenny and her husband Paul decided to treat the diagnosis like a startup problem. The result, formally founded in 2012, is HealthTree Foundation and its flagship platform, HealthTree Cure Hub — the only tool that invites patients to contribute their complete, real-world health data to academic research while giving them tools to navigate their own care in return.
"I wish this had existed when I was first diagnosed, that I didn't have to build it."
— Jenny Ahlstrom, Founder, HealthTree Foundation
The Problem
In 2010, while the Ahlstrom family was living in Mexico, Jenny was diagnosed with multiple myeloma — a blood cancer that typically strikes patients in their seventies. She was 43. The five-year median survival was roughly 50%, and her high-risk genetic features put her individual prognosis closer to two years. Tandem stem cell transplants, thousands of miles travelled, months away from her family — and along the way, a systemic failure that had nothing to do with any single hospital or doctor.
A loss they had seen before
The Ahlstroms had already watched this failure play out once before. Paul's brother David had been diagnosed with acute myeloid leukemia six years earlier and lived only a year. During his care, David tried an off-label drug that bought him six additional months — but that information was effectively lost to every other patient in the world. The same drug was formally approved for his indication fourteen years later. That is how slowly knowledge moves when it is trapped inside individual cases.
Every hospital holds only "little bits and pieces" of a patient's history. No one institution — and critically, not the patient — holds the complete picture.
A patient's health data sits idle inside a hospital's online chart, helping neither the patient, their doctor, nor the research community find a cure.
Tech companies asked patients to hand over their health data with a vague promise to "do something cool with it later." For patients, that is a non-starter.
"Having cancer is like playing chess with your life, and you just don't want to make a wrong move."
— Jenny Ahlstrom
The Insight
Paul Ahlstrom is a serial entrepreneur who had spent his career building companies and helping create a venture capital industry in Mexico. Jenny had her own technology background from years at IBM. Somewhere in the chaos of treatment, they made a decision that would define the next decade and a half: approach the cancer diagnosis the way they would approach a startup.
That reframing produced a testable hypothesis. If the powerful, real-world experience of every myeloma patient could be aggregated into one place, that collective knowledge — not any single trial — could become the fastest engine for research. The missing ingredient was not data. It was a trusted way to assemble it.
Earning trust by being patients
In 2018, HealthTree took the hypothesis on the road. The Ahlstroms and their six children sat beside elderly patients in living rooms across 50 cities, helping them enter their own data and watching, in real time, where the barriers were.
The patients' questions were consistent: Who are you? Why are you doing this? What will you do with my data? HealthTree could answer all three credibly for one reason — the people building it were myeloma patients themselves, doing it to accelerate a cure. That authenticity is the foundation the entire data model rests on.
Principle 1
The patient owns the data.
Information contributed to HealthTree remains anonymised, secure, and entirely under the patient's control.
Principle 2
The data is never sold.
HealthTree does not sell patient data or information. Doing so would destroy the very trust the model depends on.
Building the Personal Health Record
The tool that emerged from the 50-city tour became HealthTree Cure Hub. At its heart is the Personal Health Record — a complete, longitudinal, patient-owned record of a person's cancer journey, assembled from scattered records across 7,900+ hospitals including Huntsman Cancer Institute, Dana-Farber, Mayo Clinic, MD Anderson, and Memorial Sloan Kettering.
A pile of PDFs is not a usable record. The breakthrough is that the data is structured — organised consistently enough that software can reason over it. Under the hood, each patient's history is normalised into CTOMOP, HealthKey's open-source superset of OMOP CDM with oncology and genomics extensions and a 266-field eligibility-ready projection. Assemble the record once, correctly, and every downstream service becomes possible. One record; many tools.
Personalised treatment options ranked in the order myeloma experts would consider them — using decision logic built with the help of myeloma specialists. A patient explores options from home and brings them to their doctor.
Instead of facing 450 undifferentiated trials, a patient sees only the 30 or 50 they're personally eligible for. The CTOMOP PatientInfo projection is compared against trial criteria, and HealthTree's team helps the patient actually enroll.
Connects a patient with other patients whose cancer history closely resembles their own. See what worked for your "twins," add them as friends, and chat anonymously — exactly the knowledge that was lost when Paul's brother tried his off-label drug alone.
Crowdsourced, patient-reported outcomes. See what other patients actually experienced — how many tried a particular solution and how often it helped — and contribute what worked for you in turn.
The same PHR — anonymised and contributed with the patient's consent — is what makes HealthTree's research model possible. A built-in researcher portal lets academic investigators post surveys and studies and access rich real-world data. In one early COVID-19 pilot, HealthTree recruited 1,100 patients in four weeks.
The HealthKey Partnership
Assembling a clean, structured, interoperable health record from thousands of incompatible hospital systems is a serious engineering problem. HealthTree partnered with HealthKey to provide the backend technology that powers Cure Hub — a deliberate division of labor between the trust layer and the infrastructure layer.
HealthTree Foundation
A 501(c)(3) nonprofit that holds the relationship with patients, earns and keeps their trust, educates and supports them, and connects them to research. The layer patients see and believe in.
HealthKey
The backend technology that ingests fragmented records, processes and standardises them against healthcare data standards, and produces the clean, structured PHR. At its core is CTOMOP — an open-source, comprehensive longitudinal patient record built as a superset of OMOP CDM v6.0, with oncology and genomics extensions and a 266-field eligibility-ready projection. The engine that makes the patient-facing promise deliverable at scale.
With HealthKey providing the technology backbone — and CTOMOP published in the open so clinicians, researchers, and patients can audit exactly how the record is structured — work that once took clinicians hours can now take minutes.
"They've been able to do some things that many academic centers only dream of, which is they're able to amass data and make sense of the data."
— Dr. Douglas Sborov, Huntsman Cancer Institute
Impact
The structured-data model doesn't just make research possible — it makes it fast. HealthTree reports average recruitment of just four to six weeks for real-world-data studies, with full projects completing in nine to eighteen months. For patients racing the clock, compressing research timelines from years to months is a direct contribution to survival.
searched treatments & trials
side-effect solutions
surveys & studies completed
investigators included
patients recruited in 4 weeks (COVID-19 pilot)
average study recruitment time
Fifteen years later
"I could never have imagined what we have built. Just the creation that came out of this terrible situation — it's become a blessing instead of a curse in my life."
— Jenny Ahlstrom, Founder of HealthTree Foundation
Fifteen years after a diagnosis that gave her roughly two years, Jenny has no evidence of active cancer — in remission for more than four years following CAR-T cell therapy, an immunotherapy that re-engineers a patient's own immune cells to attack the cancer. Precisely the kind of advanced treatment that a complete, well-navigated health record helps patients discover.
Key Takeaways
HealthTree succeeded where others failed because patients — building for patients — earned the right to aggregate data before asking for it.
Assembling one complete, structured, patient-owned record from thousands of fragmented sources is the hard problem; solving it once makes every downstream service possible.
HealthTree holds the patient relationship; HealthKey provides the backend infrastructure — built on the open-source CTOMOP patient record so the data model itself is auditable. The division lets each do what it does best.
Because the PHR is structured, it can power treatment matching, trial matching, the Twin Machine, side-effect solutions, and research — all from one record.
Data stays anonymised, secure, under the patient's control, and is never sold. That commitment is what keeps the entire model viable.
Recruitment in weeks instead of years means patients racing terminal diseases benefit from discoveries sooner.
Where We Are Going
HealthTree is not stopping at multiple myeloma. The same architecture — a trusted nonprofit relationship layer on top of a HealthKey-powered data and infrastructure layer — is being extended to additional blood cancers, to solid tumors, and toward other terminal diseases.
The long-term vision: a future of more effective and personalised cures, in which every patient owns a complete, trusted, interoperable health record — and in which that record works as hard for the patient, and for research, as it possibly can.