Mental Health Clinical Trials

Research Involvement as an Optimisation Modality for Patients' Engagement in Treatment

The Challenge: Do forensic psychiatric patients benefit from patient-centred care?

It is very encouraging that the effect of the quality of public and patient engagement in clinical trials on participant retention, protocol adherence and trial outcomes is increasingly recognised by both the pharmaceutical industry and academic research organisations such as King's College London. Furthermore such organisations are now actively taking steps to consult with both potential future and past trial participants to determine what is required to enhance participant satisfaction in the clinical trial process and thereby effect the necessary modifications to the clinical trial process to achieve this.

In settings other than CRFs (Clinical Research Facilities) and pharmaceutical clinical trial sites it is becoming recognised that involvement in research can have even more significant effects on the patients themselves.

Patients in forensic psychiatric hospitals are different than others who suffer from mental illness: most will have committed a crime for which they have been found not criminally responsible on account of their mental disorder. Nevertheless, they suffer from mental illness that needs treatment. And research has convincingly found that involving patients in their own care is important for achieving high-quality and effective mental health services. Still, the question remains: Can the principles and practices of patient-centred care be achieved in a forensic hospital environment?

In such secure and forensic psychiatric settings there exists a tension between the promotion of responsibility and autonomy and the need to protect patients from posing a risk to themselves and others. For the patients the relevance and efficacy of care planning and risk assessment are optimised through the development of a mutual understanding of role and identity between individual patients and their clinicians.

However the barriers to achieving this are high. Patients will enter forensic psychiatirc services with a maladaptive sense of themselves and their place in society. It is by no means straightforward for either the patient or clinician to identify the patient's actual potential to recover and how this can be achieved.

Facilitating and supporting a patient's participation in research which is meaningful to their own identity and service improvement can have a significant positive impact on a patient's sense of self-worth, purpose and responsibility and the quality of their recovery.

A noteworthy example of good practice in this field is the BC Forensic Psychiatric Hospital (FPH), supported by the Canadian Foundation for Healthcare Improvement which sought to improve the quality of care through patient engagement. Led by Dr. Johann Brink, the project established three teams of patients: the Patients Empowered and Engaged as Researchers (P.E.E.R.) program, a patient led research team to design and implement a research project examining perceptions of treatment planning among patients and staff at the FPH; the Peer Support Program, to deliver group-based and individual support for patients; and the Patient Advisory Committee, to ensure that the perspectives and opinions of patients would become integral for decision-making and service provision within the hospital. Team members kept journals about their involvement, where they could express their excitement, their apprehension and their satisfaction.

The Result: Significant progress in planning and delivering treatment

Throughout the project, the P.E.E.R. team invited patients to express their thoughts about who should be included on treatment teams, how team meetings should be conducted and the importance of patient involvement in the development of treatment plans. Since March 2011, P.E.E.R has identified research priorities and methodologies. It began to collect data in October 2011 to learn how treatment planning is perceived and experienced by patients and staff in a forensic psychiatric hospital. The Peer Support Program has delivered group-based support to 35 patients and one-on-one support to 60 patients. These teams, as well as the Patient Advisory Committee, continue to evolve as challenges are encountered and as other patient and organizational needs are identified.

One patient participant said: “I was fairly nervous when we first started doing practice interviews—I didn’t think I would be any good at it. In fact, I received plenty of good feedback, which gave me more confidence the next time I had to interview.”

The project, which is ongoing, has successfully engaged patients in the very research that helps demonstrate that patient engagement is possible in a forensic psychiatric hospital. In what team leaders call “the most democratic process you will ever see for choosing a research project,” team members selected the topic through three rounds of voting on what were originally 38 potential research topics.

The project research findings to date have indicated that evaluating patients’ and providers’ perceptions, and understanding the strengths and gaps in services from their perspectives, is an important way to create a blueprint for moving toward a patient-centered model of care.

The project also marks the first time patients have attended and presented at clinical staff meetings, the first time patients have conducted research interviews and the first time forensic psychiatric patients have attended and presented at the annual Pacific Forensic Psychiatry Conference.