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Case study: Time to Talk Day: The importance of Patient and Public Involvement (PPI) in mental health research

3 February 2022 is Time to Talk Day - a national day devoted to talking about mental health. To mark the day, three members of the public with a passion for mental health research share their experience of working with the Managing Multiple Health Conditions in Older Adults (MODS) programme and the Behavioural Activation in Social IsoLation (BASIL) study.

The MODS programme involves developing and evaluating a brief psychological support package designed to help older people with multiple health conditions who experience low mood or depression. When the UK entered lockdown in spring 2020, the BASIL study was adapted from MODS with the aim of mitigating depression and loneliness during the COVID-19 pandemic. BASIL was classed as an Urgent Public Health study, which meant that the research was prioritised and given extra support during the pandemic.

We caught up with Alan and Sue, who are on the MODS/BASIL PPI Advisory Group, and with Chris, the PPI representative on the independent Programme Steering Committee, to hear about their work.

How did you first get involved with MODS?

Sue: “I have a background in nursing and completed a degree in counselling due to my interest in mental health. I found that counselling was not easy due to the emotional burden and turned to research instead. I joined a service user and engagement group for mental health in Scarborough and found out about further opportunities to get involved. This is how I heard about the MODS PPI Advisory Group.”

Alan: “Mental health is a passion of mine and I have experience as a service user and carer. I became involved in the MODS programme through my work as a trained NHS PPI leader. What I like about MODS is that it recognises how much physical and mental illness go hand-in-hand. This is something that is often underestimated or forgotten about.”

Chris: “I have been involved in PPI groups via the NIHR for many years and was approached about being on the MODS Programme Steering Group due to my participation in another mental health project. I was immediately taken with the idea of MODS, as I strongly believe in the benefit of psychological support packages to improve mental health. I have worked on chemotherapy wards and done telephone support work for cancer charities and I have seen first-hand what a difference talking to people and supporting them can make.”

Tell us about the work you have done with MODS and BASIL.

Sue: “We attend regular meetings and discuss the research to make sure it’s inclusive. In the beginning, we did a lot of work looking at the participant information sheet and booklet to make sure that the wording was easy to understand. We also had some suggestions on how to improve the logo for BASIL.

“The research team is fantastic - they always give you the chance to speak and they take what you say on board. It’s been lovely working with them.”

Alan: “When COVID hit, we did a lot of work adapting the BASIL study from MODS. We spent time going through the paperwork, changing the layout and cutting down on jargon. We also suggested making some changes to the study website to make the information easier to take in. Another big topic of discussion was the ways in which participants could engage with the study. We wanted to give potential participants different options, such as being contacted by email, telephone or video call.

“With MODS and BASIL, involving patients and the public is not just a tick-box exercise - the research team really cares. It has been a real team effort and everybody has played a part. On a personal level, I’ve also enjoyed the social aspect of being in the PPI Advisory Group.”

Chris: “I have been involved in the co-design of the MODS and BASIL studies, making sure they are accessible and easy for people to take part in. Everybody who works on the study is genuinely enthusiastic about involving patients and the public. PPI members are actively encouraged to contribute during meetings and I always feel listened to.”

Why is it important for members of the public to be involved in mental health research?

Sue: “It’s really important to involve people with lived experience to keep the research grounded and to make sure it’s accessible to everyone.”

Alan: “It is vital for people to be involved in mental health research so that we can make sure we get listened to. Unless you have struggled with mental health yourself, or you have been a carer, you can never truly know what that person is experiencing. Service users and carers can help fill in the gaps to make sure the research is going to benefit others.”

Chris: “While researchers are generally passionate about what they do, they can’t always see things from the patient’s point of view. When both sides work together and you have a balanced interaction between both, that’s when you see real results that make a difference to service users.”

You can read more about the MODS programme and the BASIL study on their websites. The research is led by the University of York and the Tees, Esk and Wear Valleys NHS Foundation Trust. It is funded by the National Institute for Health Research and supported by the NIHR Clinical Research Network North East and North Cumbria.

To find out about how you can get involved in research, visit the Be Part of Research website.