Published: 26 May 2022

By Grace Melvin , Senior Policy Officer, Association of Medical Research Charities

Originally posted by NHS Digital.

Grace Melvin, co-chair of the GP Data Patient and Public Engagement Advisory Panel, explains the importance of putting people's voices and concerns at the heart of the effort to improve the NHS's use of GP data.

The GP Data for Planning and Research (GPDPR) Programme has the potential to benefit people and communities by improving NHS services and contributing to vital medical research.

But this won't be achieved without actively engaging the public and earning their trust. That trust cannot be taken for granted and building it needs sustained and meaningful public engagement.

This is demonstrated clearly by the National Data Opt-out Programme in 2018 which owed part of its success to ongoing engagement with over 50 different organisations. It sought to understand what people's concerns were and made meaningful changes to its programme to reflect those concerns.

The pause gave the opportunity to take a different approach and put a genuine emphasis on transparency, engagement and communications.

After the launch of the GPDPR programme in Spring 2021, concerns grew about the programme, how it was communicated, and confusion about the opt-out. After significant media backlash, the programme was paused, with new commitments to ensure the concerns were heard and fully addressed.

The pause gave the opportunity to take a different approach and put a genuine emphasis on transparency, engagement and communications. 

Support from critical friends

The Patient and Public Engagement and Communications Advisory Panel was established shortly after the pause to make sure public and patient views were inputting directly into the programme's thinking.

The panel includes members of the public, patients and representatives from organisations with an interest in how data is used for public benefit.

A crucial aspect of the group is its ability to work alongside the programme and speak up as a critical friend. As members of the group, we advise NHS Digital on the development of communication and engagement approaches that are accessible to everyone and constructively challenge to ensure they deliver on the promises they've made.

An important element has been to encourage the GPDPR programme to be open and honest about the lessons learned and having honest conversations about how to get it right this time.

The group’s input has helped shape communications and website content, so people have the right information to understand the risks, benefits and safeguards that are in place.  

An important element of this has been to encourage the GPDPR programme to be open about the lessons learned and having honest conversations about how to get it right this time. 

As a group, we have pushed for as much transparency as possible, making sure activities of the GPDPR programme, key documents, write ups of workshops and meeting minutes are published and available for public scrutiny. 

Overall, the group ensures that people’s voices and concerns are kept at the centre of the programme.

Where next?

The work that the group has done so far represents a first step toward meaningful engagement, but our work is far from over.  A much wider, more inclusive, and sustained two-way dialogue with the public is needed, with the findings being actively addressed to build confidence.

  • diversity and inclusion. The group recognises that it - and the wider GPDPR programme - needs to hear from a broader, more diverse range of groups and communities. It is hugely important to engage with under-represented populations, who often have lower levels of trust in how the NHS uses data and who want to be involved in shaping plans about how their data is used. This was highlighted by new research commissioned by Understanding Patient Data. This is a priority for the next phase of engagement activity
  • communication and engagement: Engagement cannot be a one-off exercise and must be long-lasting.  There is more work to do on communicating things that are important but too often insufficiently explained to people. These include the choices people will have to opt out of their data being used and really clear explanations of new safeguards such as the trusted research environments (TREs).  The panel has started to explore both of these topics and written up those discussions. These communications will become easier when the policy direction on these topics becomes clearer. More context should also be given to help people understand how data is currently used, how things are changing, and how the GPDPR programme relates to other commitments made in the NHS 'Data Saves Lives' Strategy
  • transparency: The GPDPR programme has committed to greater openness and transparency, and the panel will continue to hold them to account on this. Things have previously taken too long to be made public and we must avoid things happening behind closed doors. People need to know that the programme is addressing their concerns appropriately and wisely

The GPDPR programme is too important to get wrong

It is encouraging that NHS Digital has taken steps to create a more trustworthy programme, but work is not finished yet. As a panel, we continue to champion the importance of meaningful, sustained engagement and transparency to support NHS Digital as it rebuilds public confidence in the programme.