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Researchers - how and who to involve

Who Gets Involved?

People who take part in PPI activities, either by volunteering or by being asked to by a clinical research team, are usually those who have had experience of the disease or condition being investigated, or are parents or carers of someone who does. Some research groups at UH Bristol, especially those investigating illnesses that people live with for a long time, have patient reference groups or advisory panels. For example, the Academic Rheumatology Research Group (a collaboration between researchers at UH Bristol, University of the West of England and University of Bristol) has a very active PPI group, including patient research partners. The latter are people with experience of the disease, who actively contribute to the study at all levels, including being co-applicants on grant applications. Charities also have patient advisory groups that are often willing to comment on research proposals.

How to Involve People

You do not need ethical approval for PPI activities. At UH Bristol we recognise that different research and PPI groups or individuals will have different requirements and therefore do not have a set policy on PPI in research. However, we strongly recommend that researchers follow the good practice guidelines of INVOLVE:

INVOLVE Good Practice Guidelines: "how to involve members of the public in research".

Full INVOLVE guidelines on PPI are also very useful and available at: INVOLVE: Briefing notes for researchers

The Research Design Service can also advise on including PPI in grant applications

As a clinician you could talk to current patients (and/or their family members if present at a consultation) and ask whether they would be willing to be involved. Further conversations would be needed for you to explain your research ideas, and what level of involvement the patient could offer or be willing to give. It is a matter of using common sense and your knowledge of the patient to ensure that they are able and willing to take part voluntarily. Charities often have patient support groups who would be willing to help; these usually consist of people who have had, or are living with, a particular disease and therefore can bring their experience to your research. Similarly, you may know of someone, possibly a colleague or a friend, who has relevant experience. The Trust's patient experience team may also be able to help identify groups of past or current patients who help with service delivery in a particular area, and may also be willing to become involved in research.

Involving Children and Young People

You can follow the general guidelines set out above (obviously involving parents in the discussions), and again charities may have specific support groups who can help. The Medicines for Children Research Network (MCRN) also have a Young Person's Advisory Group located at UH Bristol who again may be able to help design or comment on your proposal.

Resources and Guidance for Researchers

A good starting point is the INVOLVE guide "Briefing Notes for Researchers", available to download at http://www.invo.org.uk/resource-centre/resource-for-researchers/ 
This site also contains templates of useful documents, examples of case studies and guidelines of good practice. It is important to avoid "tokenistic" involvement, where researchers ask a patient to comment on an application, or join a steering group, without fully supporting the patient.
UH Bristol's Patient Experience Group can also give advice on how to contact other local patient groups, and on how to conduct informal group discussions with patients. Visit their website.
For guidance on PPI in preparing your grant application, please contact the Research Design Service via rds@uhbristol.nhs.uk or the Research Grants Manager via elinor.griffiths@uhbristol.nhs.uk