Managing health records shouldn’t be so hard

We believe there's a better way.

In today’s healthcare environment, medical records and personal wellness information are often spread across a complicated maze of apps, portals, and systems, leaving patients and providers without an easy way to access and share important health data.

That’s why HIE of One is building a solution.

Introducing Trustee®: a private, patient-directed health information record being built on the HIE of One open source platform. The Trustee universal health record is designed to address the needs of multiple stakeholders across the healthcare delivery spectrum, while giving the patient complete control over who has access, to what, and when.

For Patients


Trustee gives patients control over how their health records and information are used.

Imagine if you had access to all your medical records in one place, anytime, anywhere, regardless of provider or health system. No more costly records requests, faxes, PDF files, or CDs. No more trying to piece together information from a hospital portal, smartphone app, and a stack of paper printouts.

With Trustee, you can share and revoke access with the caregivers, providers, and researchers of your choosing. And, once Trustee is set up, retrieving information from an authorized provider portal or Medicare is an automated process.

For Providers


Trustee breaks the silos in today’s electronic health records management.

Despite more than 10 years of federal guidelines and technical innovation intended to encourage interoperability, chances are your patients’ records remain locked in one or more proprietary software systems or centralized EHRs. Updates to medical histories, notes from out-of-network providers, and detailed, self-curated tracking on social determinants of health contain important keys to providing quality care and improving outcomes. Yet, none can be easily accessed without costly delays and third-party services.

With Trustee, you can have access to your patients’ comprehensive, longitudinal health records where and when you need them.

Designed by physicians for their patients.

Private

Each patient manages their own, independent Trustee. No personal health information is kept by HIE of One; blockchains are used for accountability and credentials to assure data privacy.

Decentralized

Trustee enables patients — not hospitals, tech companies, third-party medical record services, or HIE of One — to decide how their digital health histories are used, and by whom.

Standards Based

From authentication to data exchange, Trustee incorporates key standards including UMA, OAuth2, OpenID Connect, and FHIR to promote the utmost flexibility and transparency.

How can I get Trustee?

Trustee is still in development, with a private beta expected in late 2020. If you’re interested in contributing to its development, participating in beta testing, or just want to stay in touch, drop us a note below, check out our code repo on GitHub, or follow us on LinkedIn.

Can I use Trustee for my own notes or with my wellness devices?

Yes. Activity logs, wearable monitors, and fitness trackers are increasingly popular, but it can be difficult to get your personal data out of an app, much less do anything with that information. Because Trustee is standards-based, any personal health information can be authorized, stored, and shared, either via an API or manually.

Can I share my records with researchers?

Yes! The Trustee Directory™ enables patient and provider communities, institutions, researchers, and other organizations to aggregate and analyze participant data if a patient has granted authorization or access. This unique feature benefits the wider health ecosystem while protecting individual patient privacy.

Will my Trustee communications be HIPAA compliant?

Yes. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) is a US regulation that governs how providers, payers, and other entities store and transmit sensitive health data. HIE of One operates under what is called the “Individual’s Right of Access”, which gives patients the right to a designated set of health information and records. HIE of One makes that access possible.

Our Story

Trustee grew out of a collaboration between Dr. Adrian Gropper, a noted expert and active contributor to patient privacy, open data, and national healthcare policy, and Dr. Michael Chen, a practicing physician and software developer known for creating NOSH, an open source electronic medical records system (EMR). Both Drs. Gropper and Chen knew firsthand the challenge of effectively managing health information, and in 2014 they set out to address it head on.

Since then, HIE of One, a Public Benefit Corporation, has grown into a group of more than 20 advisors and contributors. The project comprises patients, caregivers, clinical providers, public health communities, and technologists, all with a shared mission of advancing healthcare information solutions and standards.

In 2018, the team began laying the groundwork for a scalable, open source platform that would:
– Protect patients’ privacy by enabling them to directly manage sensitive health information and actively consent (or not) to the use of their medical records
– Reduce the risk of errors inherent in the fragmented records system that exists today, improving the quality and continuity of care while reducing costs
– Promote clinical innovation and research in areas such personalized medicine and drug discovery by increasing availability to real-world evidence
– Leverage today’s emerging technologies while supporting the standards and regulations of tomorrow

With Trustee, HIE of One is making this vision a reality, and leading the way in breaking down barriers to a truly patient-controlled, universal digital health record.

Team

Adrian Gropper, MD

Both a physician and engineer, Dr. Gropper consults on medical devices and is an active advocate for patient-centered and patient-controlled health IT.

Michael Chen, MD

Michael is a practicing board-certified family physician and medical director for a primary care clinic in Portland Oregon, an avid software developer, and an advocate for open source medical applications.

Edie Pargh

Edie is a marketing communications specialist with 40 years of experience in pharmaceuticals, medical devices, and managed markets.

Advisors & Contributors

Carol Kochmann, MBA, CPA

Danny van Leeuwen, OPA, RN, MPH

Rob Hagopian

Deborah Peel, MD

David Dinhofer, MD, MSMI, FACR

Randy Bak, MD

M Celine Takatsuno

Brigitte Piniewski, MD

Robert Goldstein, MS

Karn Verma

Michael Guthammar

Lydia Fazzio, MD

Leah Houston, MD

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