Primary Care Pathfinder: discovery report – expanding records access


5.4 Expanding records access for citizens offers both challenges and benefits

A citizen’s GP health record contains rich information compared with any other health records, due to the central role of general practice in citizens’ life-long interactions with the health system. As such, it contains very sensitive personal information. It is universally agreed that access to it should be carefully controlled.

The General Data Protection Regulation (GDPR) gives individuals the right to access their own health records. They get access through a formal request to the practice, and the information passed over is a snapshot taken at that point in time.

Online access for citizens to a summary of their health record on an ongoing basis has been possible for some time. This gives citizens basic information about their:

Varied health record access

Citizens can request this online access to their summary records from their practice. Individual practices can also choose to proactively make this access available to registered citizens on an individual or wider basis. Only three of the practices we interviewed had done so. This is an example of citizen access that varies across Wales.

Interviews with practice staff and those with an interest in GP services outlined potential challenges and benefits of providing online records access in some form to all citizens.

Challenges included:

Benefits included:

Just three practices involved in this study had switched on summary records access for all their registered patients. These practices had not observed any additional demand or other drawbacks by switching on record sharing. However, they acknowledged that citizens’ awareness of the access was minimal, and they were not clear how many patients were making use of it.

Ambivalence about records

We asked citizen participants if they were interested in seeing their medical records, but there was a general sense of ambivalence about it. Though they felt it sensible to know their health history, they had misgivings about seeing anything surprising or that made them question their GP’s openness.

We did not ask directly about awareness of GDPR and patients’ rights to see data held about them, but three participants’ answers indicated an awareness of rights and compliance gained through their work.

Asked about ownership of health records, citizens firmly took the view that practices have the responsibility to maintain, store and safeguard their records. They felt that other health professionals involved in their care – such as dentists, pharmacists, optometrists and physiotherapists – should be able to access strictly relevant information from their records on a case-by-case basis. They expected to be informed about any requests by third parties to access their records.

5.5 Information sharing between professionals is a key challenge for the future model 

The vision laid out in the primary care model for Wales is based on individuals receiving care from a wider range of professionals, seamlessly, across organisational boundaries. Most stakeholders agreed that wider access to information in the GP health record is central to safe, effective and efficient care provision.

It was evident from those stakeholders representing non-general practice health professionals that current levels of access are variable across both professions and geographical areas.

Pharmacists said they can access a summary record and that having more detail would help them in their expanding role in primary care. Dentistry and optometry reported they currently have no access and need it to provide more effective and safer care.

Expanding records access

General Practitioners Committee Wales (GPC) said that extending summary records access to dentistry and optometry is planned. This still excludes community and allied health professionals. Representatives from these groups all stated that information sharing is the biggest challenge multi-professional working faces.

We learned that there is geographical variation in records access for community health professionals. For example, we heard that district nurses in one South Wales cluster we spoke to have full records access, whereas those in a neighbouring one have none. This is because access is controlled at an individual practice level.

We also heard that multiple conversations about an individual take place between professionals working for different organisations (for example, between GPs, paramedics, district nurses and occupational therapists) but there is no system for recording what happened in the discussion.

Next: Access to GP services remains the main challenge for citizens