Personal Health Records definition

A record is a PHR if:

• it's secure, usable and online
• it's managed by the person who the record is about and they can add information to their PHR
• it stores information about that person’s health, care and wellbeing
• health and care sources can add information to the PHR

PHRs are sometimes called other things, like patient portals. They are PHRs if they meet this PHR definition.

You should:

• make sure the PHR is accessible to all users, including those who face barriers to using information technology
• consider how to meet the W-CAG AA accessibility rating
• involve patients and care professionals from the start, when designing and developing your PHR, as both groups can champion the worth of PHRs to others
• work early with procurement and legal specialists, to create processes that reflect agile development of PHR systems
• build your PHR on best practice, for example based on the UK government digital service design manual
• make sure that your PHR meets the identity verification and authentication standard for digital health and care services, when approved

The PHR is managed by the person who the record is about and they can add information to it.

You should:

• make it easy for that person to give consent for others to view the information they have in their PHR
• make sure the PHR complies with the General Data Protection Regulation (GDPR) and allows patients to access and reuse their personal data across different services

PHRs store information about that person’s health, care and wellbeing.

You must:

• consider how to include all relevant areas involved in a person’s care, like social care, when developing a PHR
• make it easy for a patient to understand clinical terminology, for example by providing definitions from trusted sources
• consider from the start how the PHR will integrate with consumer apps and wearables
• make sure that your PHR aligns with key NHS informatics standards, like SNOMED, ICD10 or NHS number
• make sure that communication systems within PHRs are secure

Health and care sources can add information to the PHR.

Bear in mind:

• that any care information sourced from the professional record, like an electronic health record, is the responsibility of the care professional, under their professional code of conduct
• from the start how the PHR will exchange information with other sources, using open standards

This toolkit:

• will be developed through ongoing research with organisations developing Personal Health Records
• shares learning and local innovation
• promotes consistency, through interoperability and standards