Patient and Public Involvement (PPI)
There is an international recognition and movement to embed patients and members of the public in research and develop ways in which to measure their impact and capture feedback, both from the researchers and the lay representatives. Below you will find a few documents and links–related to the Blood and Transplant Research Unit in Donor Health and Genomics and further afield–to explain:
- What is PPI?
- Why is PPI important?
- What is current best practice for PPI?
- How do I capture and disseminate feedback?
- How do I measure impact?
There is much more available, but the resources displayed below are designed to introduce patients and the public to PPI and help you determine whether or not you are interested in getting involved in health research.
Blood and Transplant Research Unit (BTRU) in Donor Health and Genomics
Advisory Committee opportunities:
- Management Committee meetings
- Trial Steering Committee meetings
- PPIE meetings
- BTRU Seminar Series
- NHS Blood and Transplant (NHSBT) BTRU Training Day (29 & 30 October 2018)
- Tiered Consent workshops (7 & 20 November 2018)
- Blood Centre Tour (20 February 2019)
- Cambridge Science Festival (14 & 24 March 2019)
- Advisory Committee workshop (2019)
Glossary (coming soon)
National Institute for Health Research (NIHR)
NIHR define public involvement in research as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.” Find out how NIHR interacts with the public and how you can get involved.
“INVOLVE was established in 1996 and is part of, and funded by, NIHR, to support active public involvement in NHS, public health and social care research. It is one of the few government funded programmes of its kind in the world. As a national advisory group our role is to bring together expertise, insight and experience in the field of public involvement in research, with the aim of advancing it as an essential part of the process by which research is identified, prioritised, designed, conducted and disseminated.”
“The document provides practical help and support on all aspects of the role, including the legal context, and is interspersed with the views and experiences of co-applicants and researchers.”
“The standards are the work of a Public Involvement Standards Development Partnership which brings together representatives including public contributors from the Chief Scientist Office (Scotland), Health and Care Research Wales, the Public Health Agency (Northern Ireland) and the NIHR (England). The public involvement standards produced here aim to provide people with clear, concise benchmarks for effective public involvement alongside indicators against which improvement can be monitored. They are intended to encourage approaches and behaviours which will support this: flexibility; partnership and collaboration; a learning culture; the sharing of good practice; effective communications.”
Reviewing progress in public involvement in NIHR research: developing and implementing a new vision for the future (2018)
The objectives of this publication were to “review the progress of PPI in NIHR research, identify barriers and enablers, reflect on the influence of PPI on the wider health research system in the UK and internationally and develop a vision for public involvement in research for 2025. The developing evidence base, growing institutional commitment and public involvement activity highlight its growth as a significant international social movement.”
“The final report and recommendations to the Director General Research and Development / Chief Medical Officer (CMO) Department of Health of the ‘Breaking Boundaries’ strategic review of public involvement in the NIHR.”
“The Breaking Boundaries strategic review of public involvement was commissioned by the Department of Health and announced on March 31st 2014. This review is the first, full-scale inquiry into how far the NIHR has been successful in achieving its original strategic goals in public involvement. More importantly, it has been an opportunity to conduct an open and collaborative exercise involving patients, the public, other funders and partners with the aim of guiding the NIHR as to how it can improve and strengthen its approach to public involvement.”
Centre for Research in Public Health and Community Care (CRIPACC) – Patient and Public Involvement: Feedback from Researchers to PPI Contributors (2018)
“This guidance provides some practical tips on the Who, Why, When, What and How researchers could improve their Feedback to PPI contributors.”
“The NCCPE has an international reputation for inspiring and supporting universities to engage with the public.”
NHS Blood and Transplant (NHSBT) – Patient and Public Advisory Group (PPAG)
Find out about NHSBT’s PPAG and how you can get involved.