Senedd members heard concerns about digital exclusion, clinicians inappropriately accessing patient records and a lack of public understanding about how personal data is used in the health service.

The equality and social justice committee took evidence about the use of personal data in the Welsh NHS as part of a short inquiry on data justice on Monday October 16.

Jenny Rathbone, who chairs the committee, said members heard anecdotally about people who work in health services inappropriately looking up information about somebody they used to be in a relationship with.

Labour colleague Sarah Murphy raised similar concerns, citing the example of a domestic abuse victim who feared a perpetrator could access their data so avoided going to the GP. The Bridgend MS called for a function in the NHS Wales app to allow patients to see who had looked at their medical records and an option to restrict access for certain people.

Hamish Laing, who is responsible for the Digital Medicines Transformation Portfolio, gave an overview of the Welsh Government initiative which aims to transform prescribing. Prof Laing said there has been a lot of discussion during the design of the NHS app about building an audit function to allow people to see who’s looking at their records.

He told the committee that the app has been designed with that in mind but there is not yet an intention to build it in as the Welsh Government would need to commission it. Prof Laing, who chairs Digital Inclusion Alliance Wales, said there is already an audit tool, which allows health boards to see who is accessing data and flags suspicious activity.

The former health board chief said disciplinary action would follow any inappropriate access but the majority of searches were genuine.

Public understanding

Alyson Thomas, chief executive of Llais, a new national citizen voice body, which replaced the seven community health councils in April 2023, called for a national campaign to raise awareness about the use of personal data in the NHS.

She said the public expects that data is shared more widely than it actually is in the NHS and there is a real issue in terms of the public’s understanding of what data is held.

Ms Thomas told the committee that patients are frustrated they have to repeat themselves when they expect health care professionals to have access to their information.

She said families in distressing circumstances are often asked about a loved one’s medication when they expect the NHS to have such information to hand.

Digital inequalities

The committee also heard concerns about data poverty, digital exclusion and inequalities.

Prof Laing said the people most likely to be digitally excluded are disproportionately represented, so the NHS has a particular responsibility. He assured members that he was confident nobody would be left behind, saying patients will be able to choose to continue accessing their prescription in the usual way.

Prof Laing also raised concerns about the cost-of-living crisis and data poverty, saying about 16% of people gave up or reduced their broadband last year due to the cost.

Ms Thomas questioned how representative health data is of the population as a whole, warning about gaps in information for people with protected characteristics.

Prof Laing said 40 million paper prescriptions are currently boxed up every year in Wales and sent to procurement for payment. Making the process digital will not alter what is shared, he added, but it will make it easier to process the information which will be held in a single place for the first time.

Prof Laing said the NHS Wales app will include an ‘about me’ section to capture information such as communication preferences.