Researchers' experiences of patient & public involvement

Definition, purpose and values of patient and public involvement

INVOLVE is an NHS National Institute for Health Research advisory group that supports public involvement in health and social care research. INVOLVE defines public involvement as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them”. By ‘public’ INVOLVE means patients and their relatives as well as members of the general public. They make a distinction between:
  • Involvement – where people are actively involved in research projects and in research organisations.
  • Participation – where people take part in a research study.
  • Engagement – where information and knowledge about research is shared with the public.
The Chief Medical Officer (Professor Dame Sally Davies) has stated that “No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique, invaluable insights. Their advice when designing, implementing and evaluating research invariably makes studies more effective, more credible and often more cost efficient as well.”*

We asked researchers how they viewed the purpose of involvement. A common answer was that only people who had experienced a particular condition could really understand it, so the aim of involvement was to bring that expert knowledge to the table alongside researcher knowledge. Tom suggested it was important not to see it through scientific eyes as a ‘fact-finding mission’ but rather about valuing ‘the colour and the nuance and the diversity’ of different types of knowledge.
Bringing this expert insight to individual research projects could make them better: more relevant to patients, more likely to be funded, more likely to recruit participants, and in the end more likely to improve clinical practice and patient experience. For Alice and others this was the main point: ‘I would mostly focus on the more effective research, less waste, better outcomes for everyone argument’. Jim commented: ‘Nobody would design a product or a service without finding out whether the customers wanted it… And research is the same. Why design a study to recruit people if they're not going to like it and it's not answering something that’s important to them?’ 
As Sabi pointed out, there are arguments for involving both general members of the public, and patients who are directly affected by a particular bit of research. But it was also pointed out that involvement can have a wider impact - not just on specific pieces of research or tasks such as improving patient information leaflets, but on the whole mind-set of researchers - and that this could help generate new research areas. Some people such as Chris acknowledged it had taken them a while to realise how much they didn’t know.
Some researchers felt involvement was as much about values, including human rights and an ethical duty to give people a say, both patients who receive care and members of the tax-paying public, even if it is hard to demonstrate measurable impact on research (see ‘Measuring the impact of involvement’). Alison commented: ‘I think the benefits do outweigh the costs because the costs aren't actually that massive. I don’t think the benefits are that massive either, but on balance. Apart from anything you could always throw in the democratic imperative card which outweighs everything else so.’ Others felt this was not enough, and it was important to have a more specific goal in mind.
The danger of a tick-box approach to involvement, just because it is ‘politically correct’ or required by funders, was a common concern. Some felt involvement did not always make sense and could potentially undermine researchers. (See also ‘Doubts and worries and debates about involvement’ and ‘Colleagues’ attitudes to patient and public involvement’).
There was agreement that there was no point in doing it badly, for example not listening and never acting on patients’ input, and that this could be unethical and damaging. It was also pointed out that researchers need to be clear why they are doing it in each study and what their expectations are. At the same time, some researchers argued that any involvement is better than none.
Defining the boundaries of involvement

Our sample included some qualitative researchers, particularly researchers who conduct interview studies with patients about their experiences. There was some frustration that qualitative research and involvement sometimes get confused with each other – though there is also some recognition of an overlap. An important distinction is that talking to patients for involvement purposes does not need ethical approval – whereas qualitative research does. It is also important to note that being interviewed about personal health experiences is not the same as being asked to comment on aspects of the research study itself – though such interviews can sometimes suggest research questions or priorities.
We also talked to some clinical researchers who felt talking to their own patients and research participants was a form of involvement, while others disagreed.
Involvement may also be a way for people to acquire new skills and (especially in mental health research) to aid their recovery. Vanessa and Felix argued this was an important goal or outcome in its own right; Hayley felt that although this could be a valuable by-product of involvement it was not the main purpose. (In our companion site on patient and public experiences of involvement, we look at the personal benefits involvement can bring to individuals).
Most people we talked to were clear about the difference between engagement and involvement, as Jim described, however, a few people found the terms confusing or used them interchangeably.
The question of whether user-led research counts as involvement is ‘one of those grey areas’, as Vanessa put it. The INVOLVE definition includes ‘research done by members of the public’, and it is certainly a growing area, especially in mental health research, where service users are often involved in data collection and sometimes also in analysis. Valerie argued that just because someone has learnt to do some analysis doesn’t stop them being a parent of a disabled child. But some researchers such as Sabi had doubts about whether this was still ‘involvement’ or really just ‘research’, despite official definitions.
See also ‘Reasons for involving people’, ‘Researchers’ examples of the value and impact of involvement’ and ‘Doubts, worries and debates about involvement’.

*Foreword in Staley, K. (2009) Exploring Impact: public involvement in NHS, public health and social care research. INVOLVE, Eastleigh.

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