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 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.

Establishing a partnership with PEDRI

This partnership is focused 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.

Pan UK Data Governance Steering Group

Membership includes Doreen Tembo, Head of PIE at HDR UK, and two HDR UK Public Advisory Board members.