Personal health records in the NHS: how national policy translates into regional strategies and initiatives
What are we trying to do?
- improve our understanding of stakeholders’ expectations and views on rolling out Personal Health Records in Greater Manchester;
- inform how to translate the national Personal Health Record strategy into a regional approach for GM that optimises patient experience and harnesses the potential for improved and equitable care and outcomes.
For this, we plan to answer the following research questions:
- How are Personal Health Records and Personal Health Record-like technologies (i.e., technologies aimed at giving patients more control over their health and care data) presented and rationalised in published national policies and strategies over the last five years?
- How do (a) regional and local policy and decision makers and (b) private organisations (e.g., companies offering Personal Health Records solutions) interpret and make sense of these national policies/strategies and translate them into activities and initiatives?
- What are regional and local stakeholders’ (a) assumptions about if and how Personal Health Records impact on health care, equity and outcomes, and (b) views, expectations, and experiences of the current Greater Manchester landscape of Personal Health Records, and how this could be improved to better harness the potential benefits of Personal Health Records for the region’s citizens who need it most?
Why is this important?
NHS England is encouraging health care providers to adopt Personal Health Records solutions (for example, see here). Personal Health Records may allow patients to have more control over their own health data and that this will ultimately support people with better managing their care and health and wellbeing.
In line with this national strategy, Health Innovation Manchester are exploring suitable Personal Health Record solutions to roll out in Greater Manchester, building on the findings from initial work with users around a Personal Health Records app. At the same time, individual providers in the region or national professional bodies are inviting patients to access and control their own health data via other routes, for example, Trust-based patient portals such as MyMFT, Evergreen Life (offered via GP practices), or Patients Know Best (commissioned by the UK Kidney Association for all kidney patients).
A recent expert panel highlighted that multiple access points for the same services can create risk, barriers to inclusion, and inefficiency. Similarly, the variety of Personal Health Record-like solutions available, both nationally and in Greater Manchester, is likely to confuse patients, negatively impacts their engagement with this digital innovation, and ultimately limits the potential benefits for improving their care and outcomes.
This is especially true for people with multi-morbidity: while they may benefit most from a Personal Health Record as a way to better coordinate their health data and care, they are also most at risk of being offered several Personal Health Record solutions with overlapping functionalities because they have multiple long-term conditions and receive treatment in different parts of the health system.
Lastly, there are concerns that introducing PHRs may worsen existing or introduce new health inequities.
How are we doing it?
We are undertaking the following activities:
- Identifying, reviewing and analysing national strategies and policies to understand how Personal Health Record-like technologies are justified and prioritised. The findings from this work will form the basis for the design of the qualitative research aspects fo this work (activites 2-4)
- Interviewing (i) regional policy and decision makers and (ii) staff from private organisations developing regional and/or national Personal Health Record solutions to examine:
(a) How national strategy is interpreted and acted on by regional and commercial partners.
(b) What their assumptions are about if and how Personal Health Records impact on care, equity and outcomes, and their views, concerns.
(c) What their preferences are for a regional approach for Personal Health Record adoption in line with these assumptions.
(d) Their activities/plans for supporting people with multimorbidity and those from underserved groups to use and benefit from Personal Health Records.
- Holding workshops with the members of the community to further explore patient and public views on how national priorities are/should be translated into local and regional services, building on the findings of previous work. As prompts for discussion, we will use screenshots from a range of available Personal Health Record-like solutions and personas reflecting people most likely to benefit from such solutions (e.g., older people with diabetes and chronic kidney disease from an ethnic minority background) and those supporting them (e.g., carers, parents of children with a long-term condition). The screenshots and personas will help us illustrate the current Personal Health Record landscape from the patient perspective, and identify (missed) opportunities for Personal Health Records to have a positive impact on people’s health and care.
- Hosting a World Café format event (in collaboration with Health Innovation Manchester) to bring together regional and local stakeholders, including patient and public representatives, policy and decision makers, Personal Health Record providers, and health care providers/professionals.
Who are we working with?
More information:
Programme Manager
Dr Ross Atkinson
ross.atkinson@manchester.ac.uk