Understanding best practice on patient and public engagement for data partnerships

Lisa Murphy and Natalie Banner

Last year Understanding Patient Data (UPD) published their ‘Foundations of Fairness’ report which detailed research findings on public attitudes towards health data partnerships. It included recommendations for our then, newly formed, Centre for Improving Data Collaboration (CIDC). We have since been working together to operationalise these recommendations and bring a patient-centred approach to CIDC’s work supporting data collaborations. Natalie Banner, UPD Lead and Lisa Murphy, Programme Manager (NHSX) reflect on a joint event held in early March to explore what best practice might look like in regards to patient and public involvement.

Our online event was designed to kick start a discussion that would connect and align professionals who have established or are exploring data collaborations in their approach to public engagement. Expertise in the room spanned health sector bodies such as medical charities, research centres, digital innovation hubs and NHS trusts. It was apparent that the opportunity to connect and share learning and challenges among peers was highly valuable and the discussion was rich and thoughtful. We wanted to share the main emerging themes with you here.

Organisations recognise the value of involving people in decision making, but there is no consistency in how this is done

Organisations told us they were carrying out a range of patient and public involvement and engagement (PPIE) activities related to data partnerships, both continuously, for research and innovation pursuits and in an ad hoc manner on specific collaborations or issues. We heard that engagement occasionally lacked strategic direction and was often reactive to a current situation rather than driven by more holistic insight and understanding.

Through these conversations we identified the need for PPIE to be integrated throughout all decision-making stages of a partnership, including its governance, agreement of terms, communications and impact evaluation. These touchpoints were valued by organisations although there was uncertainty around how best to execute this in practice.

We want engagement on data collaborations to form part of a wider PPIE strategy, with organisations gathering consistent feedback from their population on key data sharing issues. This means that when partnership opportunities arise, the conversations can be more focused on the specifics of design and execution. Several organisations were already using patient and public advisory groups to provide insight and sense check any proposed data sharing. But patient and public groups had varied autonomy, from providing advice on key issues, to sitting on steering groups, to having voting rights on boards, with some organisations even exploring a patient-led approach to research prioritisation.

There’s a need for a community of practice surrounding PPIE

As well as facing similar challenges, participants found they were carrying out engagement activities to answer similar questions. While the drive to understand local populations is important, these resource intensive activities would derive more benefit through open working and organisations working to draw from and contribute to one another's findings, broadening the understanding of populational attitudes and expectations around health data collaborations. This way of working would facilitate targeted and transparent engagement, bringing increased benefit for patients and the public.

PPIE findings are not always representative of the population

Participants highlighted the lack of diversity within their PPIE groups, particularly with regards to race and ethnicity. The main barriers to participation were noted as technical, geographical and organisational culture factors. It was noted that while our current, COVID-19 induced, digital world has some benefits for including traditionally under-represented groups, the digital divide brought about further challenges to others.

Concern was raised that PPIE groups were at times made up of the same individuals, from event to event and also across organisations. Resulting in those who regularly engage becoming increasingly expert on key issues and perhaps less able to genuinely represent the wider population. Organisations were at times unsure of how to balance bringing fresh perspectives to their engagement, while retaining the knowledge and expertise of these longstanding participants.

Attendees were aware that the lack of diversity within these groups may have caused feedback to be unrepresentative of the whole population and a number of organisations were already taking steps to address this using targeted engagement activities or proactively working with marginalised communities to identify and address barriers to participation.

Next steps

The session proved really valuable and we intend to use our findings to inform wider guidance on establishing and governing health data partnerships, including the development of a ‘Value Sharing Framework’. This framework will launch this summer and aims to provide organisations with practical advice and best practice on applying the Department of Health and Social Care’s five guiding principles for data sharing.

The CIDC’s engagement team are also working within NHSX and collaborating with external partners to:

  • establish a community of practice for health sector organisations that manage, share or use data
  • create resources for integrating PPIE activities across the partnership lifecycle, ensuring organisations are confident in their scope and to help overcome barriers to achieving diversity and representation.
  • support development of a cohesive central narrative on key issues, such as transparency and governance, as well as the understanding of commonly used terms, such as ‘de-identified data’ or ‘artificial intelligence’
  • develop a ‘checklist’ for organisations to carry out prior to engagement, encouraging coherent practice and that standards adherence

We are grateful to those who joined us to share their expertise and make this event so valuable and we are planning on carrying out similar events for other health data controllers in the future. A special thanks to Natalie Banner, Tom Harrison and Grace Annan-Callcott from UPD, for working alongside us to host this event.