Personal Health Records direction of travel

A key theme of the NHS Long Term Plan is to help “people manage their physical and mental wellbeing”. 

To manage their own care, people need to:  

• understand how to manage their condition 
• be supported proactively to prevent long-term conditions 
• have efficient ways to monitor their condition 
• share their health information, if they wish 
• contribute their own health and care information to discussions about them 
• have their care joined-up, even across multiple services 

Those involved in a person’s care can include health and care professionals, family, friends and wider support networks, including schools and local councils.  

They need to: 

• see all information relevant to a person’s health and care 
• avoid unnecessary burdens on their resources 
• prioritise clinical face-to-face time  
• understand a person’s preferences

Digital tools like apps, home-based monitoring equipment and wearable health devices have been shown to support people to play a greater role in their own care and that of others. 

Personal Health Records

Personal Health Records (PHRs) are a particular group of digital tools that have emerged over the last decade, that offer potentially transformative benefits for patients and health and care services.

PHRs allow patients to view records held by health and care services and write in their own information.  

This could include to: 

• fill in a mood diary 
• add images 
• or upload data from health monitoring equipment 

This adds to information that health and care teams know about the patient, to form a comprehensive shared record, which leads to better health outcomes. 

A PHR can also help patients share key information with a wider support network, like family and carers, if they choose to.  

Our PHR definition sets out the main PHR characteristics. Some websites and apps come under this definition but do not call themselves a PHR. 

PHRs: 

• are starting to help people to manage their wellbeing 
• have the potential to improve patient care 
• could provide new ways to offer care 

East Surrey Hospital’s inflammatory bowel disease PHR is helping the service to lower costs significantly, to use limited staff resources better and to improve patient experience, with no reduction of clinical safety.

Most people with access to their health and care records typically have read-only access to GP records.

This alone has limited potential to improve patient outcomes and enable people to actively manage their physical and mental wellbeing.

More can be done to support full PHR ‘read and write’ record access for everyone across the country.

This includes:

• the need to be interoperable with other systems
• covering multiple services in large geographical areas 
• being linked into Local Health and Care Record (LHCR) plans and the development of the NHS App 
• being designed for and with PHR users

Designing to meet user needs  

The Digital Service Standard and Technology Code of Practice sets out that the design and development of PHRs must be informed by and meet user needs. This includes health and care service users, as well patients and the wider public.   

It is vital that full business change, appropriate service design and user involvement is done alongside technical delivery, or the full benefits of PHRs will not be realised.   

The new NHS digital service manual covers services for patients and the public. It gives commissioners and developers the tools to deliver quality user-centred products that meet user needs. 

From single services to regional and beyond 

Early PHR development focussed on localised projects that solve one specific need, typically in one service or pathway in one hospital.  

PHRs are now allowing patients to view their records and contribute information, which might be used across multiple care settings.  

PHR providers are developing wider functionality, by understanding user needs better, to support more conditions, across wider geographic locations. 

Interoperability 

All systems in the NHS, including PHRs, must be interoperable and comply with current standards in the href="https://digital.nhs.uk/about-nhs-digital/our-work/nhs-digital-data-and-technology-standards/framework" rel="noopener noreferrer" target="_blank"> NHS digital, data and technology standards framework. 
 
New national requirements have been set by: 

• the recently-formed NHSX  

• the Department of Health and Social Care policy paper ‘The future of healthcare: our vision for digital, data and technology in health and care’ 

It is required that: 

• PHRs are interoperable, so that other digital solutions can add data to a PHR and read data from it, using open standards 

• a PHR must not be tethered to a single clinical system  

This push towards interoperability will allow: 

• data entered by people, or generated by a device, to be shared with health and care systems 

• clinicians to have a more comprehensive view of the patient 

• people to manage their own care more easily 

• people to reuse their data held in a PHR in other relevant apps 

Local Health and Care Records (LHCRs)

The Local Health and Care Record (LHCR) programme is leading interoperability by developing integrated care records across GPs, hospitals, community services and social care, to create a regional record of a person.

The NHS Long Term Plan sets out that LHCRs will: 

• enable personal health records 

• produce open APIs 

APIs will create a market of apps and tools built on this standardised approach.  

Some of these apps will be PHRs that use the regional record to create innovative tools, to support people with tasks like managing their condition or to see their care plans.  

Building PHRs in this way means they will not become another silo of data. User authentication for these systems will be consistent, by using tools like NHS login.  

The NHS App is a national platform to give people an entry point to the NHS. This might offer access to personal health records, using NHS login to verify identity. 

NHSX CEO Matthew Gould blogged in May 2019 that “we will keep the NHS App thin and let others use the platform that we have created to come up with brilliant features on top.  

“We will expose the APIs, so that other people can develop their own apps to meet their own user need - apps that can plug in, safely let people access their own data and deliver a different user journey.”