Citizen-mediated data sharing
Citizen-mediated data sharing lets a person start and direct the sharing of their personal information with a service, organisation, or another individual of their choice.
In healthcare, this allows patients to share information from their personal health record with another individual, organisation, app, or service. Also referred to as patient disclosure or patient-initiated sharing, the technology performs the transfer that the patient asked for.
Patients Know Best (PKB) has been a leading advocate for and pioneer in implementing this model in healthcare since its founding as a social enterprise in 2008.
The model is based on data being aggregated into a single record that travels with the patient throughout their life. From the outset, the patient has the tools to share with another individual or organisation helping the patient. Increasingly, this has extended to other health and wellbeing services or apps the patient finds useful.
The patient’s role
The defining feature is the patient’s active decision to share information through the connection. This gives patients another way to use information in their record. It complements information sharing between healthcare organisations and does not transfer those organisations’ responsibilities to the patient.
The patient’s instruction to share and the receiving service’s arrangements for processing the information are distinct. Each organisation remains responsible for its own activities and applicable obligations.
It enables greater patient empowerment and control over their health, without taking away the legal accountability of the organisations that generated that data.
Background
Citizen-mediated sharing sits within a wider effort to give people a more active role in accessing and using their personal information. This aligns with the development of Personal Information Management Services (PIMS), a classification used by European regulatory bodies to describe software enabling citizens to manage their data footprint.
Personal health records support this approach by making health information available to patients and enabling them to share it. Related initiatives, including the MyData movement, have also promoted greater individual involvement and transparency in the use of personal data.
These approaches can use different technologies and governance arrangements. Citizen-mediated sharing does not depend on a particular storage model or on patients personally managing encryption keys.
Supporting infrastructure
Technology enables PKB to carry out the patient’s instructions securely. While implementation details vary between services, the core supporting functions include:
Bringing information into the record
Makes information from source systems available within the personal health record.
Identity and authentication
Checks who is accessing the record or initiating a connection.
Connecting the chosen service
Enables the transfer of information through the patient-initiated connection.
Managing access
Applies the access controls supported by that connection.
Protecting information
Uses appropriate safeguards for information held and transferred by the service.
Recording activity
Supports accountability through records of relevant connection, access and sharing activity.
Technical components
A functional citizen-mediated data sharing architecture relies on several interoperable technical components:
Data ingestion
Connects to enterprise databases to ingest clinical or administrative records into the personal health environment.
Standard / mechanism: Open APIs, HL7 FHIR standards, RESTful web services
Data vault / store
Encrypted, longitudinal storage holding structured data attributes, test results, and care plans.
Standard / mechanism: Personal data stores (PDS)
Identity & authentication
Verifies individual identity securely before granting access to records.
Standard / mechanism: Federated identity, government identity verification eg NHS login in England & Wales, multi-factor authentication
Access control engine
Executes granular permissions defined by the citizen (e.g., access to sexual health data).
Standard / mechanism: OAuth 2.0, OpenID Connect, fine-grained access policies
Audit log
Maintains an immutable, transparent record of every data request, view, and authorisation event.
Standard / mechanism: Cryptographic audit trails, tamper-evident logging
PKB infrastructure
Patients Know Best brings health information together into a personal health record that patients can access and use. This includes GP data retrieved through IM1 Patient-Facing Services.
Patients can choose to connect their PKB record to an app or service and share data through that connection. The patient initiates this process, and PKB facilitates sharing according to their instructions. The third-party app or service obtains explicit consent for its processing of the information it receives.
Governance and accountability
Citizen-mediated sharing gives people an active role in deciding how they share information in their health record with the services they choose.
Patient-directed sharing
Connecting an app or service is a deliberate action taken by the patient. PKB facilitates the patient’s request to share; the third party the patient chooses has explicit consent to process the data it receives. These are distinct steps: the patient instructs PKB to share, and the third party processes the shared data under its own legal and consent arrangements.
Clear information and responsibilities
Before choosing to connect, the patient should understand what the connection shares and how the third party will use their information.
Each organisation remains responsible for its own activities and applicable data protection obligations; patient-directed sharing does not remove those responsibilities. Any external organisation a patient chooses to share their data with is bound by the privacy laws of the citizen's country of residence (for example, UK GDPR or EU GDPR for UK and EU residents).
PKB governance model
PKB’s Privacy Notice and User Agreement explain how information is handled within the service, including the distinct arrangements that apply to data received from different sources. Citizen-mediated sharing enables patients to direct sharing from their record within that established governance framework.