Involving patients and the public in health data research is crucial for ensuring that research is acceptable, transparent and relevant to people’s needs. Involving the public enhances your research, builds public trust and increases the public’s understanding of health data.
Here you will find a selection of resources we have collated which provide guidance and good practice on embedding patient and public involvement and engagement (PPIE) within your research. This includes the UK Standards for Public Involvement, how to write a plain English summary, training and how to contact our team with enquiries.
Guides
Public Engagement in Data Research Initiative (PEDRI) Resources Hub
Public Engagement in Data Research Initiative (PEDRI) Good Practice Standards
Health Data Research UK Involvement and Engagement Guiding Principles
Health Data Research UK Shared Commitment to Patient and Public Involvement
UK Standards for Public Involvement
British Heart Foundation Patient and Public Involvement in Research
National Institute for Health and Care Research (NIHR) and Imperial Biomedical Research Centre Guidance on involving the public in health data research
National Institute for Health and Care Research (NIHR) Briefing notes for researchers (public involvement)
National Institute for Health and Care Research (NIHR) People in Research
National Institute for Health and Care Research (NIHR) Plain English summaries