There’s no purpose to involvement…


… only principles and practice.

Last year I was asked to help a big research organisation to develop their payment policy for involvement. So I did what I usually do and asked other big research organisations to share their existing policies on involvement, to learn from what they do and avoid reinventing the wheel.

I looked at six existing policies. What was fascinating was they were all pretty much the same. You could insert any [name of organisation] in all the relevant places and it wouldn’t really have changed much. They all started with a statement of their commitment to the principles of involvement – the rights of people to be involved and how this would improve the relevance of their work. Then they all went on to describe excellent practice in terms of how their recruitment processes were fair and transparent, how they trained and supported the people they involve, and the policy details of whether and how they reimbursed expenses and paid for people’s time.

But these organisations were so different! I won’t name names – but some were funders of research, some were concerned with the ethics of research, some were charities providing services, some were charities focused on funding research and campaigning, and some were organisations using the results of research to make decisions about health policy. So these organisations make very different types of decisions. This means the precise way that patient or public involvement adds value to their work is likely to be different in every case.

The nature of any decision being made determines why you need to involve people, what you need them to do, as well as precisely who you need to involve1. It’s important to bring in people with the necessary perspective and/or experiential knowledge to usefully inform and influence the outcome.

So I think paying attention to the purpose of involvement, and being clear how this relates to the specific decisions being made, could help organisations to be clearer about what they need to do and why. This won’t be about doing what everyone else has done, but focusing on what’s different.

  1. Fredriksson & Tritter (2016) Disentangling patient and public involvement in healthcare decisions: Why the difference matters. Sociology of Health and Illness (in press).

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