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Case study: The invaluable role of patients and the public in health research

The research

Antisocial personality disorder (ASPD) is a personality disorder characterised by aggression and often reckless and criminal behaviour. Consequently, ASPD is particularly common in the criminal justice system: while it affects 0.6% of the UK general population, up to 63% of offenders are affected.

ASPD can be difficult to treat, with many other health problems arising as a result of individuals’ circumstances and lifestyle. Problems including alcohol and drug misuse may be interwoven with ASPD and also need to be addressed. However, many people may not be willing to access help and may not receive the help they need until they enter the criminal justice system.

Mentalization-Based Treatment (MBT) is a psychological treatment that is based on the idea that we all want to be understood. It helps people understand their own and others’ thoughts and feelings and can also help people learn how to control aggressive behaviour. At the same time, social relationships and general wellbeing are improved.

The NIHR-funded MOAM trial is considering whether MBT can reduce aggressive behaviour and whether it is more effective than the usual support offered to service users who are on licence under the National Probation Service (NPS). The research team, led by Professor Peter Fonagy from University College London (UCL), have randomly split 313 participants who are taking part in the trial into two groups: half receive probation as usual and half receive MBT in addition to this for a year.

Patient and public involvement makes a difference!

The involvement of patients and the public has been integral to the MOAM trial and has allowed the project team to work effectively with this seldom-heard group. Specially trained User Voice peer researchers with lived experience of the criminal justice system have played a vital role in the project. From raising awareness of the project within the probation service, and meeting with participants to collect follow up data, to taking an active role on the Trial Steering Committee.

As a result of high levels of engagement, recruitment to the trial has been good and there have been very few participant dropouts (less than 7%). Data collection has been of high quality with no measurable loss of accuracy associated with adopting the peer researcher approach.

Peter Fonagy commented: “The involvement of researchers with lived experience as data collectors for a multisite national RCT within the NPS was unknown territory for the research team here at UCL."

"Working in collaboration with User Voice to involve peer researchers with lived experience has enabled the team to successfully recruit and follow up over 300 participants with ASPD across 13 sites to explore the effectiveness of MBT for this population. The MOAM trial is the first multisite RCT within the NPS to adopt this approach.”

Making a difference

Not only is this trial the first ever large-scale trial of treatment for offenders with ASPD, it also provides an excellent demonstration of the impact of patient and public involvement in research. Details of this project have been shared with INVOLVE as an example of exceptional PPI.

Peter Fonagy added: “UCL and User Voice will be sharing learning from our experiences through a PhD study specifically concerned with peer researchers in RCTs. It will make a much needed further contribution to the growing literature about the effectiveness of involving researchers with lived experience in mental health research.”

The project is due to be completed at the end of 2020. Please see the project page for more details or sign up to receive an alert when the results are published.

The NIHR believes that patients, carers, and the public are essential to health research and it helps us do the best research we can which is most relevant to the needs of our nation. Find out more about the NIHR’s commitment to involving patients and the public in all stages of research here.

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