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.

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. 

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.

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.

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.

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.