Research priority setting – patient and carer perspectives

Over the last 18 months, the NIHR Maudsley Biomedical Research Centre (BRC) has been conducting priority setting consultations with academics, clinicians, local service users, carers and other stakeholders to understand their priorities for mental health research. On 23^rd February 2016 a further priority setting event was conducted to allow interested service users and carers to find out more about the most frequently raised questions, and put forward their views on the themes that have arisen. Dr Sarah Markham, a member of the BRC Service User Advisory Group (SUAG), reports:

The event began with an introduction by Professor Dame Til Wykes, who leads the BRC’s work in Patient and Carer Involvement, and explained that this was the first time that patients and carers were being involved in setting what the BRC’s future research priorities should be.

Dr Dan Robotham, Senior Researcher at the Institute of Psychiatry, Psychology & Neuroscience (IoPPN), then gave an overview of the afternoon’s event, including the all-important mention of lunch and a later coffee break!

Lisa Doughty of the IoPPN and Sally Strange from the SUAG gave an update on outcomes of all the priority setting exercises to date. Both began by giving some background information as to how they became involved with the priority-setting exercises. Lisa spoke about Professor Diana Rose’s research into carer and patients’ research priorities, and how they differed from those of clinicians and academics. For instance, patients and carers gave research into alternatives to pharmacological treatment a much higher weighting than clinicians.

 The themes that emerged from prior priority setting groups were:

• Medication
• Interface between physical and mental health
• Early Intervention
• Socio-environmental factors
• Therapeutic Interventions

The issue of a need for medications with fewer side effects was raised by the group, together with the advantages of having better social- oriented support in the community. Both these themes seemed to strike a chord with most of those attending the event. Early intervention also seemed to be a significant concern, together with the fact that some people might need the support of such a service more than once.

People also thought there needed to be more research into and support for medication cessation. The disabling effects of being ‘in crisis’ being a barrier to accessing crisis care was another point that provoked a lot of passionate discussion. A young carer then spoke up about research into the creation and implementation of care-plans in supporting mentally ill patients.

The post-lunch session began with a roundtable discussion on the five main themes, each theme discussion being chaired by a member of the BRC / IoPPN. This was followed by feedback from the tables. On the table focusing on the interface between physical and mental health, the need to find (possibly complementary) treatment modalities that didn’t have the long term adverse effects on physical health was discussed. We also considered the impact of mental disorder on motivation and our ability and commitment to looking after our physical health; for example through exercise and getting out to socialise and engage in helpful behaviours. Smoking cessation also factored significantly in our discussion – how the behaviour may be unhelpfully encouraged to keep a patient ‘quiet’, and the need for people on mental health wards to have something available to them to replace their smoking behaviour should they wish, or be compelled by ward rules, to give up smoking.

This was followed by another roundtable discussion, again followed by feedback from the tables. On the therapeutic interventions table we considered the benefits of providing an evidence base for the efficacy of aftercare and follow up services, especially in terms of stimulating interest from healthcare commissioners. We also discussed the need to determine the factors that best support people during transition between services. People were very supportive of the idea of mindfulness therapy and how it can support individuals to manage their disorders. Evidence-based apps and other technologies were viewed as possibly providing support, but that it was very much a case of matching the right app to the right person.

There was then a much welcomed break, followed by a session introduced by Dan Robotham to summarise the outcomes of the day and rank the suggested BRC research priorities.

Finally, Professor Matthew Hotopf, the Director of the BRC, summed up the event and made closing remarks. Matthew emphasized the aim of the BRC to interpret ‘biomedical’ in the most pertinent sense in terms of its aims and research; to include the socio-economic factors influencing mental illness as well as the biological. He also spoke of the importance of providing patients with the ‘right treatment at the right time’. Matthew concluded by underlining how much he valued the views of patients and carers, and how their aims helped to steer the BRC to stay focused on the right research priorities.

Visit our Patient and Public pages to find out more about how patients and carers help shape our research.