Roadblocks to Mental Health Research

Mental health problems are one of the main causes of the overall disease burden worldwide. Photo from Flickr under CC0 license.

Another busy ward round: a telephone rings; a nurse apologises to patients that the ward is too short-staffed to facilitate their leave this afternoon; a junior doctor furiously types up their notes whilst simultaneously explaining to a healthcare assistant how to check the observation charts; there is a strong smell of coffee and the telephone continues ringing, unanswered. With the day-today demands of healthcare, it is often challenging to also implement research. However, mental health problems are one of the main causes of the overall disease burden worldwide[1]: it is crucial that mental health services have a thorough understanding of difficulties to provide the best treatment options.

The UK government’s policy is that all NHS trusts should be “research active”[2], informing every mental health service user about studies in which they may be eligible to participate[3]. In practice, however, some NHS trusts struggle to recruit participants on target[4]. There are similar difficulties in the US, as between 2009 – 2015 the National Institute of Mental Health reduced funding for clinical trials by 45%[5]. These practical and financial difficulties can deter clinical research including academic studies, psychological intervention testing and clinical trials investigating medicinal products.

Working as a Clinical Research Assistant on the frontline of stretched NHS mental health services, I understand the challenges of integrating clinical research into practice. The everyday stresses and expectations can leave little time to think about the research evidence base, let alone add to it. Despite increased calls for research to meet the growing demands of mental health, three main challenges remain in integrating clinical research into practice.

Time Constraints

The most common barrier[6] is professionals not having the time for research when working in busy clinical settings[7]. Indeed, talk to mental health practitioners about research and you will hear countless service evaluation ideas, untested hypotheses, and subjective findings longing to be quantified. The increasing pressure on clinical services leaves little room for research, limiting commercial and non-commercial studies.

Expertise

Recruiting participants into mental health studies can be more challenging compared with physical health studies[8]. Participants must be identified abiding with strict legal and ethical frameworks regarding confidentiality and privacy[9]. Clinical researchers must be competent to perform their tasks, qualified by education, training and experience in line with Good Clinical Practice (GCP) standards[10].

In contrast with physical health research Howard et al. (2008) reported that “paternalism found between the clinicians and their patients, reflects the fact that the patient group are patients with chronic mental illness and so perceived as especially vulnerable. This has particular consequences for recruiting to mental health trials” (p. 45)[11]. These judgements around perceived vulnerability, coupled with concerns around capacity and cognitive impairment, means that individuals are prevented from making informed choices and having the opportunity to take part.

Funding

Mental health research investment remains disproportionately low in relation to its relevant disease burden. The charity MQ: Transforming Mental Health estimates that twenty-two times more is spent on cancer research than mental health research, per person affected[12]. Services are under increasing pressure in an age of austerity and contraction. This ‘double whammy’ of relative underinvestment and strained clinical services hinders research promotion and recruitment.

Despite these barriers the National Institute for Health Research (NIHR) continues to make mental health clinical research opportunities widely available, in turn, improving patient care: “Research helps develop better treatments to improve NHS care to save lives and improve quality of life. This could be trials of a new drug in hospital or something as simple as a patient completing a questionnaire about their condition. Healthy people are also often needed to take part in trials so they can be compared to people with a condition that is being studied”[13].

Clinical research includes testing new ways of diagnosing, preventing or treating psychiatric disorders through a range of methods with patients, carers or members of the public. Research methodology ranges from data collection to brain scanning to gain a deeper understanding of the complexities of mental health conditions. For instance, a current research project at Oxford Department of Psychiatry compares a new cognitive approach called the 'The Feeling Safe Programme' to an existing psychological treatment, ‘befriending’[14]. This study aims to provide an evidence base for the most effective approach for treating persecutory delusions, which can then be rolled out in the NHS for clinical use.

Participants almost always report that their involvement in clinical trials to be rewarding and positive. Image courtesy of Chris Millar.

In my experience as a Clinical Research Assistant, I have found that people participate in research for many reasons. These include wanting to give something back to services, sharing experiences of difficulties, helping other service-users with similar experiences, and/or to gain access to new treatments. I have found that most participants almost always report that their involvement in clinical trials to be rewarding and positive.

Whether you work in a similarly busy environment to that of the beginning of this article, or whether you are a service user, carer or healthy member of the public, I encourage you to consider participating in research. By volunteering time, sharing experiences and providing information you can help contribute to a future where mental health problems are better understood and more successfully treated.

For more information on UK clinical trials visit National Institute of Health Research NHS Evidence or Evidence Search, or for international research see ClinicalTrials.gov. For systematic searches across a range of international medical journals see Evidence-Based Mental Health.

References?

[1] Vos, T. et al. (2013) Global, regional, and national incidence, prevalence, and years lived with disability for 301 acute and chronic diseases and injuries in 188 countries, 1990–2013: a systematic analysis for the Global Burden of Disease Study. The Lancet, 386(9995), 743-800 DOI: https://doi.org/10.1016/S0140-6736(15)60692-4?

[2] The McPin Foundation. (2015). Everywhere and Everyone Included? - The Government must do more to make a reality of its ambitions on mental health research in the NHS - The McPin Foundation. [online] Available at: http://mcpin.org/everywhere-and-everyone-included-the-government-must-do-more-to-make-a-reality-of-its-ambitions-on-mental-health-research-in-the-nhs/ [Accessed 11 Sep. 2018].

[3] GOV.UK. (2015). The NHS Constitution for England. [online] Available at: https://www.gov.uk/government/publications/the-nhs-constitution-for-england/the-nhs-constitution-for-england ?[Accessed 11 Sep. 2018].

[4] McDonald, A. et al. (2006) What influences recruitment to randomised controlled trials? A review of trials funded by two UK funding agencies. Trials, 7(9) DOI: https://doi.org/10.1186/1745-6215-7-9

[5] Reardon, S., (2017) US mental-health agency’s push for basic research has slashed support for clinical trials. Nature, 546:339 DOI: https://doi.org/10.1038/546338a

[6] Spaar, A., Frey, M., Turk, A., Karrer, W., & Puhan, M. A. (2009) Recruitment barriers in a randomized controlled trial from the physicians’ perspective – A postal survey. BMC Medical Research Methodology, 9(14) DOI: https://doi.org/10.1186/1471-2288-9-14

[7] Cooper, M., Eyre, O., Doherty, J., & Jones, R. (2016) Gaining approvals for mental health research in the NHS. BJPsych Advances, 22(1), 64-72 DOI: http://dx.doi.org/10.1192/apt.bp.114.014035

[8] Oduola, S., Wykes, T., Robotham, D., et al. (2017) What is the impact of research champions on integrating research in mental health clinical practice? A quasi-experimental study in South London. BMJ Open,7(9) DOI: https://bmjopen.bmj.com/content/7/9/e016107

[9] Callard, F., Broadbent, M., Denis, M., et al. (2014) Developing a new model for patient recruitment in mental health services: a cohort study using Electronic Health Records. BMJ Open 4(12) DOI: https://bmjopen.bmj.com/content/4/12/e005654.citation-tools

[10] NIHR.ac.uk. (2018). Good Clinical Practice (GCP). [online] Available at: https://www.nihr.ac.uk/our-faculty/clinical-research-staff/learning-and-development/national-directory/good-clinical-practice/ [Accessed 11 Sep. 2018].

[11] Howard, L., De Salis, I., Tomlin, Z., Thornicroft, G., Donovan, J., (2008) Why is recruitment to trials difficult? An investigation into recruitment difficulties in an RCT of supported employment in patients with severe mental illness. Contemporary Clinical Trials, 30(1), 40–46 DOI : https://doi.org/10.1016/j.cct.2008.07.007

[12] Mentalhealth.org.uk. (2015). [online] Available at: https://www.mentalhealth.org.uk/sites/default/files/fundamental-facts-15.pdf ?[Accessed 11 Sep. 2018].

[13] Nihr.ac.uk. (2017). Major rise in people taking part in NHS mental health research in Berkshire. [online] Available at: https://www.nihr.ac.uk/news/major-rise-in-people-taking-part-in-nhs-mental-health-research-in-berkshire/6358 [Accessed 11 Sep. 2018].

[14] Freeman, D., (2016) Persecutory delusions: a cognitive perspective on understanding and treatment. Lancet Psychiatry, 3(7), 685–92 DOI: https://doi.org/10.1016/S2215-0366(16)00066-3