It is becoming increasingly clear that education is the key to unlocking greater patient centricity around health data. Meeting this challenge is paramount to true patient centricity success, and there is a growing amount of interest in the practicalities of how this could work.
A workshop I held recently, exploring the philosophy of empowering individuals with their records, at the National Association for Patient Participating (NAPP) annual conference, for example, was the most subscribed workshop of the event. The resulting breadth of conversation was fascinating.
Common themes are emerging from digi.me’s health community engagement activities and the workshop was no exception, with individuals wanting access to their record to give them greater agency when it comes to continuity of care, as well as being able to share and reuse their information.
But the key message that comes up again and again is the need for better education for both individuals and healthcare professionals, to maximise the opportunity and benefits, of which there are many.
The NAPP workshop was a forum for patients to share their experiences and discuss the opportunities and challenges when it comes to patient record access. It also explored how Patient Participation Group (PPGs) could support patients and practices to promote access and ensure patients legal rights are understood and upheld.
A show of hands at the outset indicated that many people had tried to access their information in some shape or form, but no-one had been successful in receiving it in a suitable format.
One of the key challenges highlighted was education, leading on to two key questions:
- Where do patients, or indeed PPGs, go to become informed about their rights and what record access is possible?
- How do they start to understand the information and what they need or is relevant?
The point about education was not limited to education of patients as it is clear within healthcare there is poor understanding of patients’ rights and best practice when it comes to the creation and sharing of records.
Those people who have engaged in record access have done so for a variety of reasons, but generally relating to their information not being readily accessible when they needed it, or wanting greater agency. While some patients are aware of local NHS schemes, there were questions about to what extent these would address the individual needs of patients. Some specific examples highlighted included:
- The ability to use health information when travelling.
- To support DVLA driving licence requirements,
- Being able to use records to support access to disability benefits.
- Sharing with 3rd parties in the private sector such as opticians Specsavers
Some patients are already trying to take matters into their own hands and there was some discussion of using mobile phones’ ICE (In Case of Emergency) features to note key health or medication information, for example. This was not something which everyone was aware of, but it ably demonstrated that there are a multitude of apps and services with which patients want to engage and be able to use their information more effectively.
Many who have already engaged in record access have had to become experts in their own right to gain access to their record and then understand it. Cascading this knowledge poses a real challenge for patients.
It would seem that organisations such as NAPP (and patient groups more generally) are well placed to empower patients with the necessary information to help them address some of these challenges.
The workshop came up with a number of ideas and suggestions:
- PPGs could help patients understand how to ask for their record and liaise with practices about the issue’s patients face.
- Support patients to understand their records and encourage GPs to create records in a way which makes sense to patients.
- Help gather up best practice and standardise process/policies used for record access.
- Support practices and their reception staff to ensure they are property informed/trained.
- Provide more supporting materials to help patients understand for themselves
There is a great deal of work to be done, but it is clear that there is also a lot of appetite for record access, and the collective knowledge in the patient community is vast and could be put to much more effective use.
In parallel to this, amid updated data protection law and enhanced rights for individuals in the UK, there has been an increase in the number of individuals requesting their information, as well as complaints to regulatory bodies about organisations.
This trend is likely to continue as patients become increasingly digital, engaged in their health and aware of their rights. The challenge remains of ensuring GP and hospital services provide fair and equitable access and uphold the rights of patients.
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