Patient and Public Involvement – why bother?

May 3, 2017

This is a question that comes up more and more in the work that I do. Not so much because people can’t see the point, but because if you are not careful you can fall in to the trap of doing engagement for the sake of it. Because it’s what you’re supposed to do, because someone said you should.

 

The key to doing a good job of planning and delivering health services is to go about the task with a keen sense of how to do the best job possible, for and on behalf of the people who need to use the services. From this fundamental starting point, it is not such a big step to accept that you cannot plan and deliver quality services if you don’t know the end user’s perspective.

 

To this end, the key purpose of involving patients and the public is to develop a shared understanding of the situation as a whole. Together we should benefit from insights, experience and ideas that help develop a fully rounded sense of the situation, both individually and collectively. Patient and public involvement is not about set piece events, methodologies, models and reference groups, these are merely tools that can be deployed to deepen knowledge and understanding.

 

Involving patients and the public starts with a mind-set. It starts when we recognise that there are things we don’t know and that greater knowledge would help us better understand the situation at hand and make informed and intelligent decisions about how things can be improved or changed. At its worst, a lack of patient and public involvement in planning and delivery of health services represents arrogance. It suggests a level of conceit that gives permission to make decisions on behalf of people, based on poor quality research and limited understanding of the situation, without critique or interrogation of the facts.

 

Recently, as part of a film made by Healthwatch Hampshire, CCG staff were asked ‘is patient and public engagement an easy or hard thing to do?’. Most people answered with hard. So, why is this? Are they informed by previous poor experiences of involving patients and the public in their work? Do they have an idea that engagement is difficult to organise, timely and costly? Are they concerned that expectations will be raised with no promise of realising them? Or are they worried that they don’t know ‘how to do it’?

 

The concept of patient and public involvement has become a ‘thing’ that you have to ‘do’, with people who ‘do it’ and ‘methods’ you have to use. In the struggle to get the concept centre stage, it has taken on a life of its own, beyond that of most people who work in the NHS. It seems to have become something special that needs special people and special ways to do it. This is a myth. Patient and public involvement should be intrinsic to us all, no matter what our role or perspective, whether as a user, a clinician, a manager or an administrator. It’s about empathy and finding out what it is like to be you, and you, and you. The aim should be to build a picture of the situation that is full colour and three dimensional; a picture that helps inform a position and a way forward based in depth and breadth of understanding that can stand up to challenge.

 

Patient and public involvement doesn’t need to be ‘big and showy’, it needs to have integrity and be inquisitive; it should have a clear and coherent purpose. It might be about one or two conversations to test an idea, or to check an assumption; it might be about researching what you think you know already, identifying the gaps in your knowledge and then setting about to fill them. It might be a sharing of experiences, a creative collaboration to come up with new innovations or it might just be about sharing the burden of the problems. Talk to people who can help deepen your understanding, engage them in ways that suit them, in their time, in their way on their turf. Be genuine in your approach and honest with your intent. Use what you find to do the best job you can and you will find people with open arms waiting to work with you.

 

Patient and public engagement, why bother? To quote the work of those on our recent Empowering Engagement programme, “We are making decisions that affect real people, hearts and interests. We care about people’s lives.”

 

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