Patient-oriented research
Patient-oriented research (POR) endorses the prioritization of an active partnership between multiple stakeholders (e.g. patients, clinicians, researchers etc.) in order to promote improvement of the current healthcare system. While incorporating patient perspectives into the healthcare system seems like it should be obvious, the current evidence-based model and clinical practice guidelines in Canada leave little room for input from people with lived experience (PWLE) [1, 2].
Within the last two decades these opinions have shifted, with a general increase in empowerment of patients and democratization of science largely in part to patient group lobbying [3]. Certain countries, such as the United Kingdom (UK) established methods of patient involvement and user-led research earlier, through the National Institute of Health Research (NIHR) UK standards for public involvement. These six standards provide a comprehensive framework to foster relationships between health care workers and the public, promoting involvement at multiple levels of research [4]. In Canada, this manifested later through the Strategy for Patient-Oriented Research (SPOR) created by the Canadian Institute of Health Research (CIHR). A central tenet of this framework is that of patient engagement, which they define as “occurring when patients meaningfully and actively collaborate in the governance, priority setting, and conduct of research, as well as in summarizing, distributing, sharing, and applying its resulting knowledge” [5]. Reflecting the report released by the INVOLVE Advisory Group associated with the NIHR, this level of engagement would define patients as co-producers of the research described in our report [6]. On the IAP2 (International Association for Public Participation) spectrum, this would place the engagement between “Collaborate” and “Empower” [7]. The term patient partners will be used to describe those with active engagement who function as co-producers in our research, a term preferred by our PWLE collaborators.
The benefits of the change towards valuing patient input has been proven on a number of levels: that the experiential knowledge of patients increases the quality and relevance of health research, and that patient participation in research can lead to a better acceptance of research outcomes by others [8]. Patient partners, who have unique backgrounds and experiences also provide new perspectives for the co-production of research ideas and experimental avenues. This is not limited to their own experiences with mental health disorders. For example, a patient partner with mathematical expertise could mentor investigators on proper statistical use, or someone with graphic design experience could create materials for further recruitment. Some studies have attempted to quantify direct patient involvement in biomedical research outcomes by finding evidence of direct demands or concerns recorded from patients [9]. This quantification could be problematic in the attempt to frame patient-oriented research under the traditional medical model that has historically failed in including patient perspectives. In foundational laboratory-based science, there is a clear bias towards purely quantitative results which hinders scientific advancement by potentially disqualifying essential information. The benefits of qualitative evidence in science are clear from the fields of psychology, sociology, and more who have contributed great advances to the scientific community. The necessity to educate lab-based scientists to accept viewpoints that would be classified as qualitative is evident. Even with evidence of beneficial outcomes POR faces many challenges regarding proper incorporation into biomedical sciences. Gaining insight into the exclusion mechanisms that those with lived experience will encounter is a priority. These include behaviors (e.g. granting them less speaking time, attention, or respect) or verbal communications (e.g. clinicians sidelining issues they feel are not their responsibility, speaking in jargon) that make the patient partner feel uncomfortable and undervalued [3, 10]. A recent study [11] showed that many biomedical scientists and health care service workers still prioritized perceived expertise over experience, even with conscious positive attitudes towards patient and public involvement.
Systemic issues also discriminatorily impede the participation of various PWLE. Racial and ethnic disparities in health research – To our knowledge, there have been no studies that have evaluated racial discrimination in POR. However, there is clear evidence of systemic and individual discrimination in healthcare settings including quality of treatment, economic barriers, bias in clinical trial participation, lack of access to proper healthcare, and more [12,13,14,15,16]. There is a high probability that these issues would be present in POR as well. For example, research on attempts to rectify these disparities have found that patients feel more comfortable with clinicians of the same race and gender [14]. It would follow that the increased comfort would extend to the PWLE-researcher relationship in a laboratory setting. However, recent data from 88 Canadian Universities show a lack of representation of marginalized populations. Out of full-time faculty, 40.2% were women, 20.9% were non-white, 1.3% were indigenous, and 21.8% had diagnosed disabilities [17, 18]. No data was collected for LGBTQIA2S+ (Lesbian, Gay, Bisexual, Transgender, Queer and/or Questioning, Intersex, Asexual, Two-Spirit, plus the countless affirmative ways in which people choose to self-identify), or intersectionality of these groups. In STEM (science, technology, engineering, and mathematics) the “leaky pipeline” phenomenon contributes to greater marginalization. In the U.S., white women make up 23.4% of tenure-track faculty in STEM whereas women of colour only represent 2.3% [19]. If faculty diversity is not increased, the likelihood of PWLE interacting with equivalent counterparts is low, and contributes to participant discomfort. This is just one example of how marginalized groups could face greater challenges in participating and having their ideas heard in laboratory-based POR. Solutions for discrimination and increased barriers for different marginalized groups in Canadian POR needs extensive further research and detailed demographics still not available.
Our laboratory-based research focuses on the characterization of potential novel antidepressants and the study of biomarkers for different depression subtypes and predictions of treatment responsiveness [20, 21]. We are foundational researchers, who focus on the discovery and investigation of basic mechanisms in the human body. While we do not directly treat patients, we are in the unique position of working alongside PWLE to develop novel experimental avenues, as well as the development of unique methods to disseminate our research to the public. It is essential for foundational biomedical researchers to partner with patients to determine strategies in overcoming their biases and to develop a working framework that allows for true partnership and respect between patient partners and researchers.
Translational research
There are evident gaps between foundational research, clinical sciences, and the public health setting. Each group uses their own jargon and specialized techniques that makes it difficult to bridge the gaps between them. Translational research aims to bridge these different fields aiming to foster joint efforts to better advance strategies and discoveries with practical health outcomes. The National Center for Advancing Translational Sciences defines this concept as “the process of turning observations in the laboratory, clinic, and community into interventions that improve the health of individuals and populations …” [22]. Translational science could also be described in a bidirectional broader sense, where experiences of individuals and populations are turned into directives for foundational and clinical research. Effective knowledge transfer is a key part of translational research, as communication between all parties cannot be facilitated until all groups are using the same language and terminology.
This has not always been successful in science, with the common “valleys of death” metaphor used to describe the information that is lost between each stage of research [23]. Failures of translation in biomedical sciences are evident in many situations, particularly in cases of translation from the community to science laboratories [24,25,26]. In fact, clinical practice guidelines can go against patient preferences, with clinicians rarely factoring in key aspects such as socioeconomic or work status into treatment options [1]. The lack of incorporation of community values has led to some proposing a patient emancipation movement, championing greater control over medical decisions, personal autonomy, knowledge, and respect from the greater healthcare system [10].
To incorporate PWLE into foundational research, there are multiple facets of knowledge transfer that demand improvement. The first is the adaptation of experiential data from those with lived experience to experiments that can be performed in the laboratory. In most foundational research, individual qualities are erased to control for extraneous variables, which is not a reflection of the reality for many PWLE. The erasure of individual variables contrasts with many of the questions posed by patients (e.g. “What is the right treatment for me?”, “How does socioeconomic status impact treatment availability?”, “What are the best treatments for different lifestyles?”). An example of a solution for this is Priority Setting Partnerships (PSP) that is described in further detail later in this report.
The second translational component of POR is the translation of foundational research to those with lived experience. As mentioned previously, knowledge is a powerful tool for patients to gain equal respect when negotiating the terms of their treatment or the focus of future research [3, 10, 12]. Aside from this, certain patient partners express their own interest in biological and foundational research, and participation in the laboratory setting could provide a learning experience. One of our patient partners has expressed interest in working with the Animal Care Unit that we use for our research. Patient partners are also eager to incorporate their own experiences into research, such as one of us who is a lawyer and has provided invaluable insight into administrative processes and furthering POR in our community. The final component, included in nearly all of the POR research thus far, is effectively translating the findings from the foundational scientists and PWLE to a larger audience that includes clinicians, other patients, and the wider community [26, 27]. This is considerably more difficult than it seems at first glance, with questions such as what knowledge, to whom, by whom, and how the information should be distributed [28, 29].
At each stage, identifying potential barriers to translation is necessary to move forward. For the initial collaboration between those with lived experience and foundational researchers, there would need to be equal footing on which the patients and researchers can stand. Another potential barrier is that of jargon typically used in the scientific community. All researchers should attempt to place their ideas in lay terminology, and that which is not possible should be provided to patient partners beforehand so that they may be familiarized with the terminology. All of these steps and potential challenges need to be considered when engaging in any form of medical research, however this is particularly important with POR in the laboratory setting.
An established method of engaging patients in research is by Priority Setting Partnerships (PSPs), which allow PWLE to set research priorities in certain health conditions. The James Lind Alliance (JLA) [30] has developed a framework for this research that has been successfully used in the UK, United States and Canada [31,32,33,34,35,36,37,38,39] for various conditions, including mental health disorders. However, in many articles patient engagement in the priority setting process was not conducted in a laboratory setting, an area with unique challenges. This paper aims to gather input provided by patients to update guidelines on how to create meaningful and engaging partnerships in POR in the laboratory setting. It is expected that these results will be particularly meaningful to patient partners in British Colombia and will provide a framework to expand our engagement in POR further across the province.
POR in mental health research
Those with lived experience of mental health disorders face many unique challenges in comparison to other groups of patients. Before beginning this section, we would like to acknowledge that those diagnosed with mental health disorders encompass a wide range of people, that can include clinicians and researchers. In reality, there are no boundaries between “patient”, “clinician”, and “researcher”. While we use these labels separately, please keep in mind the overlap and potential stigma experienced by those who fit into multiple categories.
Those diagnosed with mental health disorders are often viewed as less competent to make decisions regarding their care, a perceptual bias that does not account for fluctuating cycles of wellbeing or large differences in disorder severity. Unfortunately, this perceptual bias and systemic discrimination poses a challenge when implementing a model whereby a partnership between the patient and researcher is more egalitarian. There is also some risk related to the capacity of the person to participate in this form of research, and a discussion on roles and responsibility must be personalized to the individual patient. In these cases, the inclusion of caregivers and family members in the decision-making process is valuable, as demonstrated with shared decision-making with acutely ill in-patients with schizophrenia [40, 41].
This is one of the reasons why knowledge transfer, and the co-production of foundational research with patient partners is so essential. Research has shown that while shared decision-making may not decrease the severity of the mental health disorder, it was reported to increase participation, treatment adherence and satisfaction with care amongst certain patient groups [42].
While the challenges can be intimidating, certain promising strides are being made to engage those with lived experience at both the foundational research and clinical levels. In Canada, the “Alberta Depression Research Priority Setting Project” asked clinicians and those with lived experience about the most important unanswered questions in depression research. Top priorities delineated include “Which treatment therapy or method is more successful for long term remission or recovery?”, “What are the long-term physical implications of pharmacotherapy for treating depression?”, and “For various treatment options … what are the advantages in terms of cost, effectiveness, relapse prevention and safety?”, alongside many others [28].
These priorities contrast with priorities listed without patient consultation, such as determining how traditional antidepressants work mechanistically and identifying underlying genetic factors behind this mental health disorder [43, 44]. While these are also essential avenues of research, it is imperative that foundational scientists realign our priorities to those of the patient. Incorporating patient opinions on a wider scale, including amongst communities with cultural differences who may outline different priorities, would be invaluable in setting research priorities for the next generation of mental health research. Please refer to Kirmayer, 2001 [45] for in-depth information on potential cultural differences in the experience, response to, treatment responsiveness, and side effect profiles of depression.
The lack of patient engagement in laboratory-based foundational research is evident. While clinicians have begun to create opportunities for patients to collaborate on their treatment plans and decision-making, PWLE are often left out of the beginning steps of mental health research. This, alongside the larger gaps in translation of terminology and understanding of scientific concepts, discourages participation in POR. This solidifies the need for a framework of engagement of PWLE in foundational research.
