Involving Patients and the Public

Challenge

While there have been improvements, and more are in the pipeline, there is not enough public involvement and engagement in health data research.

Sometimes the public voice is missing (or projects fail to be inclusive and representative) because the research does not include lived experience from the public.

The Alliance is bringing together stakeholders to meet the challenge – by extending its membership to key organisations in PIE (such as use My data and Understanding Patient Data) and through a strategic partnership with the Public Engagement in Data Research Initiative (PEDRI).

Role of the Alliance

The Alliance is working with its member organisations to establish and drive the adoption of lived experience of PIE in health data research.

This is illustrated by the Principles of Participation which all members agree to when they join. The first of these is to:

Demonstrate active and ongoing engagement with patients and the public in the design, development and governance of their activities involving health data to provide assurance that these activities are in the public interest.

Actions have included:

• Establishing a partnership with PEDRI. This partnership focussed on exploring PIE priorities and embedding good practice among Alliance members, addressing resource information gaps for researchers and PIE professionals, listening to the public and acting on their interests and concerns.
• The co-development of new standards to guide best practice for transparency – created through consultation with the HDR UK Public Advisory Board (PAB) and Pan-UK Data Governance Steering Group, a sub-group of the Alliance.
• The creation of recommendations for a data use register standard to improve transparency and consistency in information on how health data used is published – which involved public workshops and consultations.
• Commitment to the PAB’s recommendations on building trust in data access through public involvement in governance.
• Representation on the Alliance Executive Committee from the PAB and relevant member organisations to ensure a strong public voice in determining our strategies.

Recommendations and Outputs

Contact us if you would like to get involved with the work of PEDRI.

To learn more about PIE and other Alliance initiatives, sign up for the Alliance community bulletin.

Case Study

Convening a Community to Improve Transparency in Data Use

A data use register (also known as a data release register or list of approved projects) offers the public a clear record of how their data is being used, by whom and for what purpose. In March 2022, the Alliance established a working group to help ensure that clear, consistent and standardised public records are regularly published on data use to demonstrate the value and benefit of using health data. The Alliance engaged a widespread community, and in January 2023, recommendations for a data use register standard were published.

This Alliance initiative involved consultations and workshops with numerous organisations and included responses from more than 50 public contributors, which underlined the importance of PIE to the public.

One public contributor said: “The public and patients need to know that data use registers are there. We may not want to find or use them, but we need to know they are there.”

Another called on us to “Make sure we, the public, as individuals and as interest groups, are involved at every stage of the process.”

We are now working with data custodians to support adoption of the standard. To date, over 50% of Alliance members have published a record of data uses.