“Medical knowledge isn’t the only important knowledge. It’s important for researchers to know what it’s like to actually have a condition or use services, and how that impacts on someone’s life; medical knowledge doesn’t tell you that.”
-Angela Barnard, Patient and Carer
Patient and public involvement and engagement (PPIE) is a key way that patients and members of the public can help to improve health care research and make sure that it is relevant and appropriate. It is different to taking part in clinical trials or research studies, which is called participation. While this is vital, there are lots of other ways for people to get involved, and that’s where PPIE, which is a partnership between the public and researchers, comes in. It can include:
- Suggesting and choosing research topics
- Helping to prioritise and improve research proposals
- Helping to design studies and methods
- Monitoring and reviewing progress
- Helping with studies and trials, for example by interviewing participants
- Helping to make information– for example patient information leaflets and trial result summaries – easily understandable
- Raising awareness of research through public events, social media, newsletters etc
Nothing about us without us
It’s important to remember that people who have actually lived through illness or injury may have very different views and experiences to health and social care professionals.
Patients have specialised knowledge of disease, their individual journeys from diagnosis to treatment, and how their quality of life is affected at different stages. They bring experiences of different care providers, and can provide perspectives from a cross-section of ages, genders and ethnicities. They are the people who will live with the results of research – so it’s their right to be involved.
The wider public are important too – not only do they help to fund research through taxes and contributions to charity, they are also likely to be patients (or carers of patients) at some time themselves. They are also often able to bring a wider perspective based on different experiences and skills.
This is why we believe firmly in PPIE – just as we put our patients at the centre of everything we do in clinical service, we’re working to place them at the heart of our research too. Across all parts of BHP we encourage and support our health professionals to involve patients and the wider public from the beginning of their research when it is merely a bright idea, right through to the end of the project when it is finally reported and the results made widely available. If you are a researcher, please visit our dedicated resource for involving patients in your research.
We are committed to achieving true two-way influence on the direction of research, and its translation into benefit for patients across all of our partners.
How can I get involved?
Good quality involvement and engagement with the public adds value at every stage of the research cycle:
We currently have numerous patient involvement groups across BHP members, who we regularly work with on PPIE, including:
- Liver and gastro-intestinal disease
- Sarcopaenia (loss of muscle mass and function)
- Rheumatoid Arthritis
- Trauma (Accident, burns, critical care)
- Applied health research
If you’d like to make a general enquiry or request further information about becoming involved, whether as a patient, carer or member of the public, the best place to start is by emailing our team at PPIR@uhb.nhs.uk.
If you have a specific area of interest, one of our dedicated team members may be able to help:
|Team member||Responsibilities||Contact details|
PPIE in Research Lead
University Hospitals Birmingham (UHB)
|Contact for patient groups at UHB including General Public, Audiology, Ophthalmology, Stroke, Thoracics, Cardiology||Margaret.O’Hara@uhb.nhs.uk
0121 371 8210
NIHR Biomedical Research Centre (BRC)
|Inflammatory diseases – sarcopaenia, rheumatoid arthritis, liver disease and Inflammatory Bowel Diseases (e.g. Crohn’s Disease and Colitis)||Laura.Chapman2@uhb.nhs.uk
0121 371 8486
NIHR Surgical Reconstruction and Microbiological Research Centre (SRMRC) and The Scar Free Foundation Centre for Conflict Wound Research (SFF-CfCWR)
|Trauma, burns and critical care research|
0121 371 8533
NIHR Applied Research Collaboration (ARC) West Midlands
|Applied health research at ARC West Midlands – maternal and child health, chronic disease, prevention and detection of youth mental health problems|| M.T.Skrybant@bham.ac.uk
0121 414 6026
Website: NIHR ARC West Midlands
Patient and Public Engagement Lead (Ageing and Acute Care)
|Ageing and Acute Care including PIONEER - the HDR-UK Research Hub for acute care. Integrating information about how acutely unwell people access and use health services to deliver advances in clinical care||L.C.Forty@bham.ac.uk|