It is expected that all HDR UK work and anyone in receipt of funding for research and innovation via Health Data Research UK (our Institute Members) will follow best practice and meet the UK Standards for Public Involvement.
HDR UK’s Guiding Principles are here to support our members to work towards achieving these national Standards. We will use these to hold ourselves to account and ensure best practice in patient and public involvement and engagement throughout our work.
Patient and Public Involvement and Engagement at Health Data Research UK should
- have a clear purpose and be designed to add value (i.e. it is not a tick-box exercise and enough time is given to incorporate insights)
- be a formal part of the selection criteria for new grants and funding awards, including an outline of existing and planned patient and public involvement from the applicant
- be run with a diverse group of people, including any relevant partner organisations (e.g. patient groups), ensuring accessible ways to get involved and identifying and removing any barriers
- provide support by identifying and developing the skills and knowledge base of those running the engagement and involvement activities and those who become involved
- enable those involved and engaged to work WITH us and have their say in key decisions, ensuring everyone’s contributions and heard and valued in a trusted environment
- look to try new methods of engagement and involvement (that fit the purpose) and ensure learning and insights are embedded throughout our work
- include the acknowledgement and / or publishing of the involvement of patients and the public in open access publications, internal documents, presentations, case studies and project summaries
- be regularly evaluated and adapted as needed
- identify and communicate the impact with those involved and the wider community
- be open and transparent throughout the whole process and ensure information is publicly available, accessible and communicated in a timely manner that is jargon free and easy to understand.