The first blog post of 2022 comes from Jessica Radley. Jessica started her PhD at Oxford University in 2018. Her research topic is: Understanding the emotional and practical needs of parents with psychosis and those of their children. In her blog she discusses an essential part of the research process – how to involve people who have experienced the mental health condition that is being studied. She explains why this is so important and how it had a positive impact on the way she carried out her research. Mental Health Research UK expects all our scholarships to involve service users.
What is service user involvement?
Service user involvement, also called ‘PPI’ (public and patient involvement), is the meaningful involvement of service users in research projects. There are many opportunities
within the research cycle to involve service users and learn from their expertise. Service users can be involved right at the beginning of a research project by identifying what they think is important to investigate. They can then be involved in designing the study, by thinking about ethical concerns, deciding who should take part in the project, and helping choose what kind of methods to use e.g. interviews, surveys, data that already exists. Once the research project is underway, service users can undertake the research activities like interviewing participants or analysing results. At the end of the project, during dissemination, service users can help write these findings without jargon, and can help identify forums and communities who would benefit from hearing about the results of your study. Finally, if relevant, service users can help implement the changes and recommendations from your study and eventually evaluate its impact.
If you have never involved service users in your research before, it’s really not as complicated as it might sound. First all of you need to decide who you want to involve. If you’re a mental health researcher, you might want to involve people with lived experience of the mental health problem you are investigating. Depending on your topic it may also be useful to involve carers or other family members, or even professionals who work with this population. You can find people in many ways. Groups might already exist in your institution who you can get in contact with or you could advertise in local GP surgeries or online with platforms like Twitter or Facebook. You then need to decide how often you’d like to meet with them, and whether you’d like one-off involvement in an area of the project or if you think your project would benefit from input throughout.
For more information on service user involvement like the ethics of involving service users, payment for time, barriers, and training, have a look at NIHR Involve who detail guidelines and recommendations https://www.nihr.ac.uk/health-and-care-professionals/engagement-and-participation-in-research/involve-patients.htm
Why service user involvement is important and my experiences
By involving service users in your research, it will make your research more relevant, improve the interpretation of your results, and overall enhance your design by incorporating the perspective of experts by experience. I want to use examples of my own research to illustrate why service user involvement is so beneficial. I have been a Mental Health Research UK PhD scholar since October 2018. My first project was an interview study with parents with psychosis and by late 2019 I had started to finalise the analysis of this study. In November 2019, I invited four parents with psychosis who had either taken part in the interview study themselves or were introduced to me by McPin Foundation https://mcpin.org/. I was awarded a small grant from NIHR Oxford Health Biomedical Research Centre Small Grants Programme which funded participants travels’ as well as lunch and refreshments on the day. The day started with
presenting the results of my interview study and asking for service users’ thoughts on my interpretation of the data. Service users commented on whether they felt the themes matched their own experience, and gave me suggestions on how to reword some of the themes.
After lunch, I asked the parents for their thoughts on the design of a new study which would require participants to carry around a mobile phone for 10 days which presented surveys at random times of the day. The parents thought of things that I had missed as a non-parent myself, and their feedback greatly improved the design of this research project, which then began in August 2020. Some of the points they raised, and changes I made as a result are highlighted below.
Points raised by service users
Changes made in research design
How do I answer a question about my child if they're not with me?
Surveys will only appear after school and on weekends
You shouldn’t incentivise people to complete more surveys with money
Every participant will be paid a fixed fee
Frame survey questions positively
‘I feel suspicious’ -> ‘I feel like I can trust people’
Mobile phones may be difficult to operate
Provide a set of instructions alongside study phones
Parents have different schedules depending on age of child
Tailor daily start and end times to each participant
As well as service user involvement benefitting the researcher, service users themselves have reported that their involvement makes them feel like they have a voice and are able to influence research projects that may go on to benefit them. For more information on how service users and members of the public have felt about research involvement, have a look at some of the videos on https://healthtalk.org/.