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What do GP staff think about data use?

Peter Short, clinical lead for the GP Data for Planning and Research (GPDPR) programme, picks out some of the key points from a survey of GP staff about the use of GP data – and explains how it is shaping the programme's thinking.

As a former GP with a keen professional interest in data and information governance, I thought that I broadly knew how the profession felt about sharing patient data for planning and research and understood the barriers to it.

But there is always more to learn and, over the past few months, the GPDPR team has been working closely with the British Medical Association (BMA) and Royal College of General Practitioners (RCGP) to gather further views of GPs and practice staff.

Last month, we published our listening phase report, covering different views and opinions on how data held by GPs should (or should not) be used and shared.  We conducted a pilot survey with GP staff from a small sample of integrated care systems during the listening phase and have since worked closely with the BMA and RCGP on the design of a larger, more inclusive survey of GP staff.

General practice staff are often not confident in talking to patients so they can make an informed choice about how their data is used.

Today, we are publishing the results of that larger survey, which was open to all GPs and general practice staff in England.

Some of the survey's findings have confirmed what I already believed, but others are new and highlight where we need to dig a bit further.

Here are some key points:

Minimising burden is critical

We know that general practice staff are under a great deal of pressure and that the events of the past 2 years have only made things worse. Their burdens are increased by being asked to process numerous data extract requests and make complex judgments about data access.

General practice staff are often not confident in talking to patients so they can make an informed choice about how their data is used. There is also wariness of additional burden and a challenge to the assumption that this all needs to be done by practices. They support the idea of allowing patients to enable their own type-1 opt-outs online or through the NHS App, in a similar way to the national data opt out.

This also chimes with the views of the public and patients. Respondents in our public survey supported the idea of allowing  type 1 opt outs to be set by individuals through the NHS App or an online form.

Staff say they are confident in talking to patients about their options when it comes to using patient data for individual care, but feel less informed and confident about its wider use, control and protection. It's clear we need better quality information for GP staff and patients and easier access to it.

GP staff can be our champions

Respondents are broadly supportive of what GPDPR is trying to accomplish, but we need to support them better on that journey. We also know that there’s a small group of staff that aren’t supportive or confident. We need to address these concerns and knowledge gaps in order to build confidence and win trust.

I fully support the wish to continue the conversation with general practice staff to coproduce the materials they need to confidently talk to patients about their data and choices. We also need to give patients other information channels that improve transparency and support informed decisions without creating burdens for practice staff. This cannot be done at the centre alone.

We plan to continue working with patient representative groups and volunteer general practice staff over the coming months to improve what is available to practices and patients.

Raise awareness

A third of respondents haven’t heard of GPDPR, and another third don’t know what a type 1 data opt out is. Looking in detail, we find that a higher proportion in GP roles than in other roles don’t know what a type 1 data opt out is. We still have a lot of work to do, not just in how we talk about data and choices, but in helping to raise knowledge, awareness, confidence and trust among staff. 

We are committed to continue working with general practice staff to develop  accurate and accessible messaging and materials. These must explain in straightforward language how and where data is used (and how it is not used), how it is protected, the choices available to patients and the implications of choices. 

The research we have done so far is the foundation for the next phase, which will be much more qualitative. The additional protections and safeguards being developed from the ministerial review  also need full explanation. This is all incredibly important in making sure that we get GPDPR right for both practices and patients, while taking all steps possible to minimise practice burden and maintain trust in general practice.

We’re hugely grateful to those that responded to our survey amidst unprecedented demand on services. You’ve done your bit. Now, we have to act.


Last edited: 10 October 2022 11:07 am