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This website offers practical guidance about how to involve patients and the public in laboratory based research.
A lot of guidance has been written about how to actively involve patients and the public in clinical research, and evidence is growing about the value of this. But there’s very little that is specifically aimed at researchers who work mainly in a laboratory, with very little or no contact with people affected by the condition they are studying.
This guidance has been co-produced by staff, patients, public and researchers involved in these organisations:
Project initiated, carried out and funded by:
With contributors from:
Read about how this guidance was developed
Read about how this guidance was developed
This guidance was developed in response to a project which explored what we can learn about patient and public involvement (PPI) in laboratory based research. The project looked at six research studies supported by the charities Alzheimer’s Society and Parkinson’s UK and by the NIHR Biomedical Research Centre at University College London Hospitals NHS Foundation Trust (UCLH BRC). The studies ranged from a PhD to a large scale programme grant.
The project involved interviews with the researchers before a PPI activity took place, and an email survey to all patients and carers who were going to be involved in the activity.
After the PPI activity took place the researchers were interviewed again, along with up to three patients or carers who had been involved in each research study.
All interviewees were invited to a workshop where we reviewed the report, identified key messages and began to develop our recommendations and to work on this guidance. Drafts of the guidance were shared with all interviewees as well as other lab based researchers.
People who worked on this guidance
People who worked on this guidance
Researchers:
Sandrine Geranton, University College London
Nick Hamilton, University College London
Rachel Hughes, University of Sheffield
Katie Lunnon, University of Exeter
Tony Vernon, King’s College London
Jason Warren, University College London
Patients and carers:
Kathy Bazeos, Versus Arthritis
David Byrom Parkinson’s UK
Nicola Cooper Parkinson’s UK
Sara Davies, Alzheimer’s Society
Andrew Gaylor, UCLH BRC
Paul and Kathy Gill, Alzheimer’s Society
Eileen Knight, Versus Arthritis
Sheila McKenna, Versus Arthritis
Jean Tomkow, Alzheimer’s Society
Mair Williams, Alzheimer’s Society
Sandra Wilson, UCLH BRC
Olive Smith, Parkinson’s UK
Rod Wing, Parkinson’s UK
Audrey Winkler, Parkinson’s UK
PPI staff:
Annee Amjad, Parkinson’s UK
Bec Hanley, freelancer
Natasha Ratcliffe, Parkinson’s UK
Anna-Louise Smith, Alzheimer’s Society
Rosamund Yu, UCLH BRC
Header image: Louis Reed
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