Patient Involvement in Patient Safety Theme Update

Research team: Professor Jane O’Hara, Professor John Baker, Dr Gemma Louch, Dr Abi Albutt

The Plugging in the Safety Gaps project aimed to explore patient access to electronic health records and opportunities to gather safety information in primary care. In the first stage of the project we focussed on the patient perspective and interviewed 15 people in 2018. Most people were keen to access and interact with their electronic health records, but raised important issues around accessibility, usability and inclusion, and the potential impact on patient-health care professional relationships. An overview of the patient interview study can be found here.

More recently, we have focussed on the primary care staff perspective and carried out focus groups with 19 clinical and non-clinical primary care staff. Generally, staff expressed being invested and supportive of patients accessing their electronic health records, and acknowledged the numerous potential benefits for safety. We organised the findings around four themes which are presented below, alongside example quotes to give a flavour of the focus group discussions.

Findings summary

Information – what, why and when

Discussions about what information could be viewed in the future if current access was expanded and if uptake became more widespread. Predominantly focussed around three areas: the level of information, the use of information and historical information.

‘Um, it’s a good thing, so that they know exactly what’s happening. I think they should be able to see most of the stuff but not the, the free text information because, quite often that can be doctor’s thought process down on there…’

Secure access and safeguarding

There was extensive discussion and concern surrounding secure access and safeguarding, in particular – how patient confidentiality could be ensured.

‘Yeah, but it’s like if we’ve done the online thing here, you’ve given them the records but we don’t know who’s actually going to access those records. There’s no, you know, who have they given that password to and who they’ve given that online access to, because it could be anybody couldn’t it?’

Changing behaviours and protecting relationships

Staff described how increased patient access could result in changes to staff and patient behaviours. Even subtle changes to staff behaviours in their approach to recording information was said to have the potential to create safety gaps.

‘Yes in terms of the way you have interpreted something that we have written or as you say some things that they perceive as not being recorded accurately or not, but equally erm it may allow them to be on the same page as us and more trusting so I think there pros and cons of that as well.’

Emotional considerations and consequences

The emotional considerations and consequences for staff and patients featured prominently in the data and we therefore consider this to be an overarching theme, reflected within all four themes.

‘I guess it is a bit frightening really, I feel, them reading everything that you document and whether they are going to question what you are writing, you have to be really careful what you write’.

Implications: With more patients now accessing digital services, there is a need to revisit the challenges and opportunities of increased patient electronic health record access, particularly—parameters of access, information available, and what access might look like in the future.

Lay Leader involvement in our theme

Researchers from the PIPS theme recently published a scoping review in BMJ Open and an Easy Read Summary which brought together evidence about patient safety for people with learning disabilities in hospital.  Our theme’s Lay Leader; Kate Smyth is an author on the publication and had a significant, positive impact on the project by:

• Working with the research team to shape the focus of the scoping review,
• Suggesting search terms and potential websites/organisations for grey literature materials,
• Helping to develop a guidance document that was sent to stakeholders to facilitate contributions to search terms and potential websites/organisations for grey literature.