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.

Venice

Posted by Dorothy Newbury-Birch

I’m at a conference in Venice and I think it's the most beautiful place I've ever been to. But, with a bit of time on my hands (there’s no English TV in the apartment I’m staying in), I'm wondering why we come to conferences. I've probably been to about 50 conferences, heard around 300 speakers and seen hundreds of posters. I can only remember a handful of any of them.

We’re told that its important for us to attend conferences and disseminate our work. But as I stood in front of my carefully crafted poster today for an hour and a half in the baking heat and spoke to a grand total of three people I wondered just how much dissemination was happening. I once gave an oral presentation in America to three members of my research team and someone who I think was in the wrong room but felt too bad to leave. I have, of course, also given presentations in front of hundreds of people.

So why is it so important and why do I keep coming to conferences? Well the reason is that by coming to these conferences I ‘connect’ with other like-minded people from around the world. I chat with people about their research and my research and we talk about how we can perhaps collaborate on future work.

I sat on the boat to the conference venue today (yes in Venice it's a boat not a bus!) and talked with an academic from Kansas about research in schools - a really useful conversation for a project I'm currently working on. During lunch, I chatted with some colleagues from Barcelona about a European project we are involved in. Over coffee yesterday I talked with someone from Cardiff about complex methodologies and had a chat with a member of the steering group for a recent UK trial we worked on. On the boat back from the venue, I chatted with a researcher from the USA about the differences in obtaining ethical approval in America and the UK.

These are just a few of the many conversations I have had in the last two days. I have also been introduced to some important people in the field who I didn't know before.

I know others find this whole networking thing really difficult. Anyone who knows me will know that my two greatest loves are talking and biscuits, so for me it's fantastic. But it's more than just chatting. These events give me time to think about past, present and future research and to explore ideas with others who are giving themselves the time to do the same.

They give me time to ponder and that's a good thing and that's why I come to conferences.