Why we want to recruit data sceptics

We actively sought to hear from people who had concerns about the use of GP data, to strengthen debate, improve our understanding and challenge our thinking.

The recruitment of our 7 new lay members not only improves our diversity in terms of age, caring responsibilities, region, ethnicity and sexual orientation, but also diversity in levels of support for sharing peoples’ health data. The GP Data programme was halted last year in the face of public concerns about proposals to gather health data more effectively for research and planning purposes. 

It is important we understand these concerns if they are going to be addressed, and how better to do that than welcome into the panel those who don’t necessarily agree with us?

The Panel now has members who have opted out, or are considering opting out of sharing data, alongside those who are firmly committed to sharing data if it helps to bring medical breakthroughs and better planning of services. All members of the Panel believe that sharing data can only be successful if the people who generated the data are aware of its use, confident that risks have been minimised and, if not, are able to exercise their choice and opt out.

Recruiting members who have diverse opinions reminds me of my time in one of the most uncomfortable communications roles I have held: Head of Media for NHS Connecting for Health in 2007.

Connecting for Health was tasked with delivering a multi-billion-pound NHS Programme for IT (NPfIT), which attempted to bring new IT systems to the NHS. However, the public and professional consensus was that the programme was an ineffective use of public money, and there was a lack of meaningful engagement with the public, patients or professions to inform the approach. 

We found ourselves in a situation where our relationship with the media and some journalists had become extremely strained. Some of the negativity towards the programme was misplaced but unpicking any of it required a different approach. Our team set about building more positive relationships, starting with developing better communications with those journalists open to dialogue.

While a change of public opinion eluded us, the approach of actively engaging with our critics proved to be effective. 5 years later we were seeing opinion pieces in the Times and Telegraph, written by campaigners like Baroness Martha Lane-Fox, arguing why successful electronic transformation was crucial to helping people have control over their own health.

Perhaps the achievements of NPfIT, such as installing electronic X-ray imaging in every hospital, supporting the building of the Spine, which holds all NHS users’ demographic information, and enabling the COVID-19 vaccination programme to instantly reach the most vulnerable, remain invisible. But more visible is a growing public appetite for people to gain access to their own GP records, expecting joined up information systems and acknowledging the power of data, post-pandemic.

During the last year of the panel, discussions regularly returned to the need to acknowledge the concerns of the public, rather than simply stressing the benefits of information sharing: “talking to people like grown-ups”, “don’t pretend there is no risk” and “show what you’re doing about those risks”.

Fully grasping why people are opposed or anxious is essential if members of the public and clinical professionals are to realise the potential of NHS data. Trust won’t be built by dismissing points of view that don’t fit our own. By actively seeking out those critics, crucial insights will emerge. Without these, the challenge of building support and trust becomes more difficult, if not impossible. We’re very much hoping our new Panel members will help us to rise to that challenge and we are delighted to welcome them on board.