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Standards for Agency and Decentralized Information Governance - Early Experience

Adrian Gropper, MD, Michael Chen, MD, Lydia Fazzio, MD


The many challenges to sharing and use of personal information are well illustrated by the recent Facebook / Cambridge Analytica scandal. Opaque and unaccountable concentration of governance over the personal information of over 2 Billion people into one for-profit data broker has societal impact on a global scale. This loss of individual agency can be reversed through self-sovereign technology for control of personal data [Allen16].

Individual control of personal information use, at scale, requires standards and automation. Standards enable the service providers that seek to use personal data to do that cost-effectively across the population. Automation ensures that data flows on-demand without the annoyance and delay of constant interaction with the data subject. Appropriate standards and automation transfer personal data away from data brokers and redistribute the value to the subject and the user of the data. Privacy and the economy are both enhanced.

Health records are uniquely well suited for self-sovereign agency and decentralized information governance because they drive almost 20% of the US economy through the interaction between self-sovereign patients and self-sovereign licensed clinicians. Before computers, the paper-based transactions between patients and clinicians were not mediated by any institution. With the advent of practical standards-based self-sovereign technology, the agents of patients and licensed clinicians can restore this direct relationship. Health data is immensely valuable to both the individual and to society. Roche recently paid about $2,000 each for a million cancer patient’s records [Roche].

Our HIE of One (for health information exchange of one) Trustee project is an implementation of current standards and standards-track technologies for human agency and decentralized information governance. To be self-sovereign and practical, the Trustee agent must not only be entirely under control of the individual, but the agent must also be acceptable to the institutions that sell goods and services to the individual. In this paper, we describe the design of a self-sovereign health record for the homeless and our interaction with a major academic medical center that will need to work with it. [HIEofOne]

Fig. 1 - Homeless Health Record Interaction Diagram
The numbered lines are in order of agent creation (1-4) and agent use (5-10)

Online Presence - Digital Ocean VM with fixed IP, Self-Hosted Appliance, Intel SGX

A personal agent should be accessible as a service 24x7x365. Mobile devices are not designed to fill this requirement. Self-hosting in a person’s home alongside their router would be ideal but current Internet service provider practice makes keeping a server at home difficult for the average person. This is especially true for the homeless. Nonetheless, we continue to track self-hosting initiatives such as FreedomBox and UBOS [Self].

The initial release of Trustee is hosted on a separate virtual machine for each person. Although this represents a $5/month cost, it’s essential for a self-sovereign system that serves only you and can be owned entirely by you. We use DigitalOcean as the hosting provider. The open source software can be adapted to other hosts as long as provision is also made for technical support.

Agent Endpoint - DNS Registrar

Your self-sovereign agent, your Trustee, needs to be reachable, wherever you decide to host it. To make it routable it needs an entry in the domain name system (DNS) or equivalent functionality. Self-sovereign routing is not practical quite yet although there are projects underway such as IPNS that could provide a blockchain-friendly decentralized alternative in a few years [IPNS].

For now, each Trustee needs a domain or subdomain. If you already own a domain, you can add a Trustee sub domain for free. If you don’t own a domain, the website that helped you get your Trustee probably created a subdomain for you automatically.

For patients, there is a privacy issue to consider when you establish a Trustee service endpoint that is to be shared across multiple service providers. You can protect against correlation across service providers by using different identifiers but it is very difficult to use separate agent endpoints. Large cloud service providers might mitigate this by offering separate subdomains that obscure the actual agent endpoint but these are not available yet. Although not a truly self-sovereign solution, such a service provider would be incentivized to protect the privacy of their customers.

Decentralized Identifiers - uPort, Single Sign-On, DID Auth, OpenID Connect

Access to the agent-controlled resources requires standardized single sign-on methods since would-be data users (requesting parties) cannot be expected to establish separate credentials with each patient. Trustee supports both self-sovereign (DID Auth) and federated (OpenID Connect) authentication [DIDAuth].

DID Auth supports self-sovereignty for the requesting party but requires them to install mobile apps and manage multiple credentials (see below). Federated authentication is less demanding of the requesting party as long as they trust the identity provider to preserve their interests.

In our homeless health record (HHR) example, some medical centers choose to operate OpenID Connect servers while others do not. Individual requesting parties can choose to sign-in to Trustee using OpenID Connect or DID Auth (to preserve their self-sovereignty) as long as the patient (also self-sovereign) has whitelisted the requesting party’s identity provider or has whitelisted the credentials linked to the self-sovereign ID.

The homeless health record institution we’re working with in Atlanta has not yet decided if they will operate an OpenID Connect server or not. Either way, their choice will not restrict the self-sovereignty of either their clinicians or the patients.

Verifiable Credentials - Doximity, Attribute-based Access Control, Accountability

A citizen’s (the homeless person, in this case) agent evaluates requests for access to personal data (e.g.: health records, service eligibility) on the basis of scoped requests by specific individuals. The individual presents credentials linked and secured through their decentralized identifier or, in the case of OpenID Connect, presented via the Identity Provider. The agent will issue an authorization based on the requested scope, the credentials, and the stored policies set by the citizen.

In the HHR example, the requesting party’s decentralized identifier is based on the uPort app and the Ethereum blockchain. The app is effectively a credential wallet under the control of the requesting party. The primary credential for the HHR pilot is currently that the party is a physician as verified by the Doximity social network service.

There are multiple ways for a physician with a uPort wallet and a Doximity account to add this credential. The process we use is not yet based on the W3C standards and may not be sufficiently secure for general use of the credential. The attachment of the Doximity credential to a particular uPort is mediated by the Directory (described below). Other Trustees will then see this credential and could, in theory verify it themselves. We have not implemented verification of the credential as this will be eventually under the control of uPort or another standardized identity wallet.

The (public) credential is what keeps the requesting party accountable. It implies that misuse of authority to access the patient’s records can be proved based on transaction records retained by the Trustee and timestamped to the Ethereum blockchain. This preserves the self-sovereign peer-to-peer relationship between the patient and the physician.

Agent Software - HIE of One Trustee - Free Software, UMA, FHIR

The patient’s agent is built around a standard authorization protocol called UMA (for User Managed Access). UMA builds onto the well-known OAuth2 protocol for securing a resource server API to enable the operation of the authorization server by an entity independent of the resource server. It is this separation of concerns (resource server from authorization server) that makes possible a self-sovereign agent of the patient.

Technically, a self-sovereign agent must be the exclusive delegate of the patient. That includes enabling a patient that so-chooses to modify and compile the agent software from source. All of the components of HIE of One are Free Software under the GPL license.

Another key aspect of self-sovereignty is the avoidance of a walled garden. We depend on open standard protocols to enable the patient and to work with a range of resource and authorization servers who must, in effect, compete for the patients. Aside from UMA, the HHR implements the HL7 FHIR data model and API.

Trustee Directory - Decentralized Information Governance, Privacy Policy, Support

Self-sovereign peer-to-peer interactivity does not provide two other essential features of mediated interaction: end user support and information governance for discoverability. HIE of One created Trustee Directory software to enable a community group or business to offer these services to Trustee owners. The Directory is also Free Software and self-sovereign to the group that owns it.

The Directory operator determines their privacy policy and terms of use to promote the mission of the group, which may include various business models for donating or monetizing patient data subject to concurrence by each individual Trustee authorization server. When a new Trustee is created with support from a Directory operator the authorization server is initialized with the policies defined by that group as entered in their Directory. At that time, the Trustee account is still empty of any private information and the patient can change or modify the initial policies before they enter any private information that the Directory would share.

We call this Decentralized Information Governance. Unlike current practice that locks patients into the policies of a government (typical of European national registries), a large hospital network (typical of the US large hospital model), or a corporation (e.g.: Google or IBM as transnational health records aggregators), Trustee patients can freely choose one or more Directories to support and add value to their data. This forces various Directories around the world to compete for both patients and users on the basis of their governance and policies.

Academic Medical Center - Emory Homeless Health Record, Compliance, Funding

Trustee is working with clinical researchers at Emory Healthcare (an academic medical center) to demonstrate a health record for homeless patients. This research project is led by the psychiatry department in collaboration with the computer science department and the health records services department. The homeless are high utilizers of healthcare services and have a disproportionately large share of mental health issues. It is hypothesized that a self-sovereign design will engender trust, promote interoperability across different regional providers, and improve the value of care delivered to this vulnerable population.

The project is designed in two phases. Phase 1 is all about determination of the relationship between the self-sovereign patient technology and the technology controlled by the institution. It has budgeting, project management, and compliance components. Phase 1 will also determine which entity operates the Directory and will provide end-user support. Phase 1 is primarily about risk management.

Phase 2 is the clinical phase which includes clinicians from Emory Healthcare as well as other providers in the region and possibly a community service group in the role of navigator for the homeless patients.

The two phases are expected to last 3 and 6 months, respectively. With additional delay related to grant funding. Phase 1 is already under way.

US Federal Government - Medicare - OAuth Proxy

The US Federal Government is another significant holder of personal data subject to a right of access by the data subject. In particular, Medicare keeps health insurance records for a large fraction of the population and has been actively promoting patient access and patient-directed access under the Blue Button 2.0 initiative [BB20]. This is an opportunity for testing the compatibility of self-sovereign technology with the policies and practices of a major government agency.

HIE of One Trustee is a participant in Blue Button 2.0 and has implemented compatibility with the Medicare sandbox. Medicare did not consider self-sovereign patients in the initial BB2.0 design which currently requires a multi-week and very expensive certification process for each Trustee client app that would connect to the Medicare production API. This is obviously impractical. In order to enable a tolerable user experience we have implemented an OAuth2 proxy at the Directory so that only each Directory needs to be certified. This makes sense to the extent that each Directory has a privacy policy which is the key to the rest of the certification process. (NB: Individual Trustees do not have nor do they need a privacy policy because you can’t have a privacy policy with yourself.) We have applied for production access, demonstrated Trustee, answered a series of questions and are awaiting certification.

The result of the Medicare access process will inform other projects seeking to gain access under a patient right of access, including under GDPR Article 15 [GDPR15].

Corporate Structure and Finance - Public Benefits Corporation

Lastly, the HIE of One project is testing ways to achieve sustainability and scale for self-sovereign technology. Finance is a challenge for a project that insists on Free Software licenses and open standards to facilitate substitutability. Our project is organized around an open source repository managed by Michael Chen and a Delaware (US) Public Benefits Corporation controlled by Adrian Gropper. There are no outside investors at this time and no formal management structure. Trustee is a registered trademark of HIE of One.

The corporate structure is useful for dealing with expenses such as hosting and user support during the development phase as well as the liability of operating Directory and support services. Although Michael and Adrian are both physicians, the Trustee project does not use or depend on their professional credentials.

In many respects, and somewhat by design, HIE of One Trustee is structured like many public blockchains with open source code, open participation, public planning, and very limited intellectual property protections. The focus is on implementation first and policy constraints are limited.

The sustainability of the HIE of One Trustee model for self-sovereign technology is still to be determined. The project could be seen as a “fat protocol” [FAT]. We look forward to ongoing discussion of financing models as the utility of Trustee itself becomes demonstrable and limited clinical use commences.

Next Steps - Apple Health, Backup, Record Retention, Payment

The roadmap to limited clinical use still has a few milestones:

  • The patient’s user experience needs to be on par with Apple Health

    as long as all the user expects is to connect and view her health records. One way to achieve this is to use Apple Health itself in those cases where it already offers the functionality. Apple Health is not self-sovereign by our working definition but at least it does not seem to compromise privacy. The plan will develop as we understand the constraints posed by Apple policy and potential app developer collaborators are identified.

  • A user’s self-sovereign Trustee needs to be backed up. The MVP

    backup strategy has not yet been specified or implemented.

  • Licensed users of a patient’s Trustee are subject to records

    retention requirements. They could, of course, just keep a paper notebook but this hardly seems practical. We’re investigating a simple records retention solution.

  • Long-term operation of Trustee will require some means of support

    for the accounts, at least for the hosting component. This could be as simple as documenting the way a patient can get their own DigitalOcean account and then pay for HIE of One support a la carte. Other solutions will be considered.

The HIE of One Trustee project is on track to become an example of clinically useful standards-based self-sovereign technology by the end of 2018. Please join us.











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