How to engage patients and the public: lessons I have learned

This resource was produced by Prof Keith Willett, Director for Acute Care, NHS England

When we have opportunities for service changes, are planning redesign of clinical space or developing clinical research it is absolutely essential to have the perspective and input of members of the public and patients.  Of equal important is their help in crafting the best ways to explain things to other patients or users. But we often fail to do this, engage too late and in my experience it can often be tokenistic to tick the ‘PPI’ (public and patient involvement) box.

So as a clinician involved in service redesign all my career, in serious clinical research in the last decade and in recent years managing some of the most difficult patient safety and controversial policy issues I have been asked to share solutions that I have found successful and valued by our PPI representatives. 

Starting out

Perhaps the first step is to decide what sort of help and advice you need; there are several options. These range from the ‘public’ general member of the community, but even then what ages, gender, carer characteristics best fit your need. So called ‘service user’ (an appalling term, I prefer people) can be patients who are ‘experts by experience’ because they have the condition or use the service you are looking at; they can be general patients from your own practice or ‘professional’ patients from one of the national patient organisations who are well versed in the illness, how health and care services work and familiar with contributing to panels or groups.

Having said all that despite the one million people who use the NHS each day we often fail to secure or retain the sort of PPI advice we need. So how do I do it now after years of trial and error.  In my view you reap the greatest benefit by really valuing the contribution of those who agree to help and overtly seeking their contribution. Remember it’s quite daunting for members of the public to join committees or groups full of professions on several counts.  It is an audience they often greatly respect and may be grateful to for treatment. They will usually be heavily out-numbered by real experts as they see it and whether it is matters relating to clinical care, new treatments or building design the language and terminology if often complex, jargonistic and technical.  It not surprising they turn up, understand little, and contribute less or nothing and you as chair feel as embarrassed as them.

So what’s my practice now?

 Firstly take time to ‘spot’ patients in your clinical practice who might be willing and appropriate, but beware you don’t just end up with early retirees!  Students, mum’s with children of school age, those out of employment are valuable, diverse in culture and surprisingly willing. Just ask if they would be open to an approach sometime in the future and if they are open to that add them to a list you keep.

Then when you have a project, if they still are willing, ask if you (or one of your team) can send them some simple information and follow that up with a call. Take time to interview them so they know what they committing to and you have an idea of what you will get. But for me the real lesson is how you handle meetings. Firstly allocate them a ‘mentor’ from the group they are joining – someone who can arrange a pre-call with them a few days before each meeting to walk them through the papers, explain the context, clarify the intent and demystify the language – help them frame any questions or thoughts they would like to convey.  Then in the meeting, and for me this is the real golden nugget (found by accident!), the first main agenda item  is to ask each PPI rep to give their reflections on what they took from the last meeting, and what if any general thoughts or ideas they would like considered by the group from their reading of the current meeting papers. Giving the PPI representatives primacy in this was has in my experience a profound effect on the meeting.  The expert members immediately change their language and avoid, offer an explanation for, or apologise for technical speak. Often one expert will interject an explanation as they keep one eye on the PPI reps.  Indeed I often find the experts stop addressing the chair preferring to seek non-verbal reassurance from the lay members that they are adequately explaining their point.  The compounding advantage is the growing confidence and contributions of public and patients members. Then shortly after the meeting and of equal importance, and valued by the lay reps, is the role of the mentor in speaking with them to explain anything that was not understood and in so doing start to prepare their contribution to the next meeting.

What is success? 

Well it must be seeing the PPI reps influence and  literal ‘fingerprints’ all over what you have produced as a committee; it’s also experts who have really valued the patient involvement and usually a sadness at the closure of relationship formed in the committee – or perhaps it’s that you will not struggle to find someone to help out next time.