Working effectively with patients and public in research

Posted by Dorothy Newbury-Birch

I’m chair of the Engagement Strategy Group in my research institute. I’m not sure, like most things, how that came about, but I’m here and I’m on a steep learning curve. You see, like most of us, for a long time I thought that patient and public involvement meant that we should have a couple of lay people on our steering groups. And I was wrong, so wrong. It is so much more than that and if done properly can make your research much better in so many ways. I can only talk for myself but I’ve really started thinking about this differently, in particular, in relation to one of the trials I am the Principal Investigator (PI) for.

How not to do patient and public involvement in research

SIPS JR-HIGH is a pilot feasibility trial of alcohol screening and brief interventions in schools with 14-15 year olds. On the program management group we have a representative from the education department at the local council. He has expertise in alcohol and drug education in schools and we’ve met with him a number of times both at the project management group and separately to discuss the intricacies of the work. He’s a co-PI on the project and his input was invaluable to its success in being funded. He was also our link to getting the schools on board.

We have the Young Mayor (yes, North Tyneside has a Young Cabinet) on our Trial Steering Group, who we have met and spoken to a number of times. The Young Cabinet also looked over all our paperwork prior to submitting our application for university ethics approval. We also have a young person and their mum on the steering group. They were interested in the research, trialled our intervention and gave us valuable feedback. We've been to a couple of the schools a few times to trial the questionnaires and to ask them what they think of the information leaflets we’re using.

So what are my tips from my new found knowledge? Firstly, don’t just expect people to rock up to a meeting after sending them piles of paperwork and expect them to engage. Meet with them prior to the meeting; explain what is going to happen at the meeting. Talk through some of the issues and the paperwork and get their views. Explain to them that their input is important. Check to see if they need any help in coming to the meeting i.e car parking or childcare. Make sure you have spoken to them about financial reimbursement for their time. A great resource is available from INVOLVE which can help.

Secondly, have someone in the group meet with the person a few minutes before a meeting and have a coffee and introduce people as they turn up for the meeting. Have this person sit next to the lay member and explain things if necessary and encourage them to have their say if they want to. Don’t rush them away after the meeting; ask them what they thought and if they have any questions. Make arrangements to give them a call in a couple of weeks to chat through things if necessary. Work at their pace, don’t assume they can or can’t do things.

If you take these things on board, your research, I promise you, will be better and more fulfilling for yourself and the people we are doing the research with and for.