Patient & Public Involvement

At the NIHR Day last week Amanda Bates (Research Design Service South East) and Alison Ford (NIHR Evaluation, Trials and Studies Coordinating Centre) gave an overview of why patients and the public should be involved in the design and management of a research project.

Why involve patients and the public?

Whilst it’s an integral and necessary part of any NIHR application, involving those who will be affected by the research has considerable benefits, and you shouldn’t see it as just a box-ticking exercise. Patient and public involvement (PPI) could provide different perspectives on the research, and demonstrate the relevance of your research to lives of those affected. It may give you privileged access to valuable experience and expertise, and would demonstrate your willingness to be transparent in your research.

So who are they?

Patients or the public could be anyone; we are all fit into this category. It depends on the focus of your research, of course, but could include:

• people who provide unpaid care or support;
• parents or guardians;
• people who use health and social care services;
• people with disabilities;
• members of the public who might be targeted by health promotion, public health or social care;
• groups asking for research because they believe that they have been exposed to potentially harmful substances or products;
  organisations that represent people who use health and social care services.

So how do I involve them?

PPI can happen at any time of the research process, from planning (even right at the beginning, when you’re identifying the research topic, through to the prioritisation process or designing the project), to conducting the research, collecting the data, analysing it, reporting and disseminating the findings. In terms of getting external people on board, there are a number of ways of identifying those who might be interested:

• asking patients in clinics, or finding a clinician who will ask for you;
• using ‘word of mouth’ amongst colleagues;
• via patient or user groups at local GP practices;
• holding an open event;
• finding local support groups, charities etc;
• via your local Research Design Service (or RDS).

You should make sure that they know what is expected of them, and that they are properly reimbursed for their time. You should allow time for positive working relationships to develop, and should ensure that the research environment is physically – and intellectually – accessible. For example, make sure that those with physical disabilities can access meetings, and that you avoid or explain any specific language or jargon.

Photo by Sharon McCutcheon on Unsplash