Matthew Prebeg and colleagues call for re-imagining patient engagement in youth mental health research in their new personal viewpoint article published in Lancet Psychiatry.
Drawing upon their experiences working with youth patient partners, the authors share lessons learned and offer concrete recommendations for researchers on promoting authentic and meaningful patient engagement.
At the outset of their article, the authors define patient engagement in research as follows:
‘A process in which people with lived experience of a health problem and their caregivers meaningfully and actively collaborate in the governance, priority setting, distributing, sharing, and applications of both knowledge generation and its translation.”
Previous research has demonstrated a multitude of benefits to patient engagement in research. For example, including individuals with lived experience in research teams leads to prioritizing more culturally-responsive research questions and developing more sustainable and equitable interventions. Multiple frameworks have been published to guide researchers in their patient engagement efforts. Additionally, increasing awareness of the benefits of patient engagement in research has led to many research funding agencies mandating the inclusion of patient engagement strategies in grant proposals.
However, Prebeg and colleagues argue that such mandates often lead to “inauthentic and tokenistic engagement” of patient partners in research due to a lack of knowledge on implementing existing theoretical models into real-world practice. Authors call for increased training for researchers on incorporating patient partners into their research teams.
The authors also highlight the need for a systematic attitude shift amongst researchers to enhance recognition of the value of patient engagement:
“Overall, there is still a need for a shift in attitude by researchers towards patient engagement. When patient engagement is viewed as trivial or cumbersome, or patients are not viewed authentically as experts, it affects how lived expertise will be used in shaping the research and its findings.”
To address existing barriers to patient engagement, authors recommend applying three core concepts rooted in “responsive methodology”: relational empowerment, fluidity, and flexibility.
Relational empowerment is based on the principle that all actors involved in a research project carry expertise and should share equal power throughout the design and dissemination process. Moreover, the authors argue that relational empowerment can be embedded into the research process by creating opportunities for patient partners to choose which parts of the project they want to be involved with rather than limiting their involvement to specific research activities (e.g., reviewing recruitment materials):
“Given their experience-based lens, individuals with lived experience have a contextual understanding of where and when patient voices should be most heard. Using a methodology that values relational empowerment allows research teams to provide a space in which conversations about the involvement of patients can arise naturally and be met with acceptance.”
The second key concept encompassed by responsive methodology is fluidity, which refers to research teams treating patient partners’ roles as fluid by allowing them to move between roles throughout the duration of a research project. The authors provide an example of this concept in action:
“For example, on our team, a youth partner initially engaged to coproduce recruitment material pointed out that lived experience should also inform the qualitative data analysis being conducted to ensure that the social context of the participants (i.e., youth with similar lived experience) was taken into consideration. The youth partner was able to transition into a role that included collaboration in additional research activities beyond those outlined in their original role.”
The concept of flexibility asserts the need for research teams to move away from fitting patient partners into pre-defined roles and to instead re-define patient-centred roles based on the strengths and needs of each patient partner:
“This flexibility allows patient partners to communicate what they would like their role to look like, which might involve unconventional applications of patient engagement models to meet the needs and interests of patients. For example, patients might take on multiple roles within one research project (e.g., providing consultation in one activity but partnering in another), or create new roles (e.g., developing a hybrid role that allows for the provision of both lived experience and research experience).”
Enhanced flexibility creates opportunities for patient partners to express their own professional and learning goals, which should inform their responsibilities, authors say.
To conclude the current work, Prebeg and colleagues lay out four concrete recommendations for researchers on how to implement the core tenants of responsive methodology -relational empowerment, fluidity, and flexibility- into their own patient engagement efforts:
- Be willing to adapt traditional research methodologies beyond pre-defined, categorical approaches to patient engagement.
- Provide fair monetary and non-monetary compensation to patient partners to recognize the value of their contributions. Patient partners should be included in decision-making processes around compensation to ensure that its format and amount are acceptable.
- Conduct ongoing evaluation and monitoring of all patient engagement activities. Given the lack of research available on the quality and outcomes of patient engagement strategies in mental health research, a continuous evaluation is necessary for research teams to ensure that their own patient partnerships are having a positive effect and to provide valuable insights to other researchers in the fields.
- Critically consider how varying intersectional identities and privileges held by researchers and patient partners may influence the implementation of engagement strategies. Open dialogue between researchers and patient partners regarding identity and equity should be ongoing throughout all stages of the research process.
In summary, the authors describe an iterative model of patient engagement in youth mental health research that is responsive to the needs and perspectives of patient partners:
“Through active collaboration and applying concepts of a responsive methodology, our research team was able to reconceptualize how we viewed and implemented patient engagement, and we learned the valuable lesson that patient engagement is an iterative process that changes and reflects the values and needs of the patient partners at any given time.”
The current viewpoint concludes with a call for increased funding and resource allocation in support of research methods that explicitly prioritize authentic patient engagement, along with more research that critically evaluates the long-term impact of patient engagement efforts.
Prebeg, M., Patton, M., Desai, R., Smith, M., Krause, K., Butcher, N., & Monga, S. (2022). From participants to partners: reconceptualising authentic patient engagement roles in youth mental health research. The Lancet Psychiatry. (Link)
Editor’s Note: Part of MITUK’s core mission is to present a scientific critique of the existing paradigm of care. Each week we will be republishing Mad in America’s latest blog on the evidence supporting the need for radical change.