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Participatory research – creating an inclusive approach

rachelCI attended the NHS Confederation’s Delivering Better Health Services conference last week in Manchester.  There was a lot of noise around public involvement in research and adopting a participatory approach, and it did make me question the extent to which this happens in research.  I outline below what I see as some of the key elements to conducting good participatory, people-centred research. 

Use panels wisely.

A number of organisations talked about user groups or panels that they consult to help guide decision making.  Panels and user groups are an excellent way of engaging with an end user audience to help develop services and to aid strategic decision making, however (and it’s a big however), also bear in mind the potential weaknesses of adopting this approach.  Such panels can become “expert users” who are better informed and more knowledgeable than the average member of the public so bear this in mind when interpreting their feedback.  In addition, such individuals need recruiting carefully otherwise it is very easy to end up with vocal participants who have a particular view that they wish to express!

Put the public at the heart of the research process.

Many researchers are guilty of focusing on their own objectives or interests, rather than actually asking the end user what really matters to them.  (For those conducting funded research, the funding process does not help alleviate this problem.)  The health sector, in particular, is about people, and they should be at the forefront of all decision making. Getting the public (e.g. service users, patients), as well as those directly engaged with them, involved in the research process as early as possible is therefore essential.  In an ideal world, service users should guide the research direction, not just the outcomes.  Far too often patients are consulted on services that have already been partially or fully developed.  Consequently the value that they can bring to the process is often diluted.

Maximise the impact of any research.

Mike Farrar, Chief Executive of the NHS Confederation, talked at the Conference about a need for greater exposure of those who aren’t demonstrating best practice in the sector, and a need to use the research evidence base to support decisions.  With this in mind, we should be questioning ourselves throughout the research process regarding the practical application of the research and its meaningfulness to those for whom health services are destined.  This will help to ensure that every project provides actionable findings.  Added to that, we need ensure that the outcomes can be communicated in an accessible way.  Research papers rarely reach communities outside the research world, and yet their content could and should have far broader application.

Learn from our bad decisions.

We need to share best practice, but we also need to share occasions where things haven’t gone well.  Our bad decisions should be seen as opportunities for learning rather than failures, otherwise there is a good chance that others might repeat the mistakes, which may cause harm to the very people we are trying to help.  I’d add to that that we should also draw on learning from other sectors and specialisms too.  Indeed, any research that involves the public faces shared challenges.

Participatory research is about an equal partnership between those researching and those being researched.  Many at the Conference talked about research WITH the public, rather than conducted research ON them, and this summarises nicely what we should be aiming for.

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