Lived Experience Researchers: Involving Patients and Carers in Research
Written by Aysegul Dirik, Research Assistant at the Unit for Social and Community Psychiatry
Whilst working as a Research Assistant at QMUL, I became interested in the topic of family involvement in the mental health treatment of people in hospital. I noticed that there was a lot of research that presented academics’ and clinicians’ perspectives, and some research into how family members felt about the whole process. However, patients themselves hadn’t really been asked about their opinions, despite having a central role in the subject matter. I wanted to explore this in detail, so I started self-funding a part-time PhD in November 2014.
For the first step, I needed to conduct a review to see what was already in the research literature about this topic. A conceptual review is a particular kind of review that explores a concept (in this case, “family involvement in acute mental health treatment”) in depth. To minimise bias and to ensure a wide range of views are represented, a research team is set up with people from various backgrounds, usually a mix of academics and clinicians. I began to recruit a team of people interested in the project and soon had the involvement of: two academic psychiatrists from different backgrounds; one qualitative research psychologist and a research nurse who has experience of managing an inpatient ward. However, it immediately became clear that I too would be perpetuating the exclusion of patients’ views in the research literature if the review team did not include people with lived experience of mental health services.
Without any funding or experience of involving people in this kind of research, I was unsure of where to start. I did not feel comfortable with the idea of asking people with lived experience to volunteer for a research role in which everyone else would be paid. I didn’t even know how I could meaningfully involve people in the review process, as I couldn’t find examples of it being done before.
I approached it in two ways: First, I thought about what exactly it was that I thought lived experience researchers could contribute to a project like this. I drew up a rough plan of how the meetings might go and visited a group called SUGAR (Service User and Carer Group Advising on Research) to see what they thought. We had a useful discussion about the role of patient involvement in my PhD and they encouraged me to keep them updated.
Next, I needed to secure funding. I looked up grant funders and came across the Centre for Public Engagement at QMUL. I met up with Dan Taylor for further advice, who gave me some pointers and encouraged me to apply. Thankfully, I was successful and was awarded nearly £1,000 to appoint three people with lived experience of inpatient mental health treatment, either personally or because they supported a friend or family member who had been hospitalised.
Next, I needed to further develop the ideas for how the involvement would take place and check that the job description was accurate and fair. I made a description that included detail of the review itself, its background, the plan for investigation and essential and desirable criteria, which were as follows:
You will have to meet the following criteria to be invited for interview. Please do not apply if you do not meet these criteria as this role probably isn't right for you:
Your application is more likely to be successful if you have the following experience. However it is not essential and this should not stop you from applying:
The job descriptions included more stringent criteria than I would have chosen for another patient and public involvement project, where personal experience is often the main criterion. However, for this project I wanted to demonstrate that patient and public involvement in research can be useful beyond the level of consultation, even for a potentially challenging piece of research such as a conceptual review. When I considered the amount of time and funding available, as well as my own capacity to provide training and support, I felt the candidates would need to demonstrate at least some previous experience or interest in research, particularly mental health research. If they had any extra experience, that would be a bonus. The three-page job description was also longer than I normally would have written for a research involvement role, but was designed to attract people who were happy to read longer pieces of text, which was in keeping with the requirements of the role. However, I kept the application form very short and simply asked candidates why they were interested in the role and what previous experience they had. The role does not require a lot of writing, so I did not want to deter anyone from applying on that basis. Instead, I used the interviews as an opportunity for applicants to explain their interests and mental health research background in depth.
I then went back to SUGAR to talk in more detail about the role and to check if I should make any changes to the job description and application form. SUGAR members gave me advice as well as suggestions for conducting the meetings in a way that ensures everyone feels included and listened to.
Then, once finalised, I shared the job description and advert with SUGAR and other organisations and people who had contact with members of the public who are interested in mental health research. I also put an advert on Twitter, which generated a lot of interest. Soon, I began to receive requests for further information from across the UK, as well as other countries - even as far as Australia. I offered both phone and face-to-face interviews to eligible applicants and interviewed twelve people with an impressive range of experiences, backgrounds and skills. I decided to take on Gerry, Katherine and Sue, who (amongst other qualities) all either have lived experience of inpatient mental health services or care for a person who has been admitted to hospital for mental health reasons. For everyone who wasn’t appointed, I asked permission to keep their details in case they wanted to hear about further research involvement opportunities in my department.
The second part of Ayse's blog post, on the group's meetings and future, will be posted on our engagement blog on Friday 29th January.
Written by Aysegul Dirik
Unit for Social and Community Psychiatry
WHO Collaborating Centre for Mental Health Services Development