The Canadian Institutes of Health’s Strategy for Patient-Oriented Research (SPOR) 2018 Summit highlighted the importance of conducting groundbreaking projects with multidisciplinary teams working in collaboration with relevant stakeholders.
Submitted by Claudia Gemme, PhD student, Université du Québec à Montréal, Department of Psychology
The International Behavioural Trials Network is an initiative dedicated to the generation of innovative research and aimed at improving clinical outcomes. The network was created to facilitate the global improvement of the quality of behavioural trials and to develop a repository for the best existing recommendations, tools, and methodology papers on behavioural trials and intervention development. We are working, as a network of researchers, towards the improvement of patients’ health and towards the improvement of health care systems and practices through collaborations with experts in various fields of research.
Held in Ottawa November 13-15, 2018, the Summit highlighted the importance of conducting groundbreaking projects with multidisciplinary teams working in collaboration with relevant stakeholders. Although many elements covered during the summit are already embedded in IBTN’s ideology and ongoing projects, many other thought-provoking and inspiring components of patient-oriented research were presented during the Summit. These are presented below in the hope of sparking interest and fostering a successful implementation of patient-oriented research practices.
The Summit started with the introduction of the Sickboy project, a podcast aimed at changing the conversation around disease and illness and what it means to have a disease and navigate the Canadian health care system. Addressing the plurality of experiences in the context of our research reminded all attendees why patient engagement, through the sharing of their experiential knowledge, is important. Different presenters explained the integration of patient engagement at each stage of study design.
In the implementation phase, patient engagement involves taking action, and this is where the hybrid role of the patient-investigator really emerges. Indeed, this involvement transforms the experience of disease into a field of study, thereby redefining the patient’s experience of their condition. This shift to a hybrid identity is a process that we, as researchers, should oversee and support in a more organized manner to ensure that the quality of their patient engagement experience is optimal. The monitoring and understanding of engagement practices are fundamentally important in the maintenance of quality and meaning in their engagement and allows a deeper understanding of the reasons for the successes or difficulties encountered in a trial. Once data collection is complete, patient involvement continues to be encouraged as it helps ensure the transparency of how patients’ input is actually used (or not) in practice.
Other Summit speakers addressed patient-oriented research with Indigenous populations. These presentations were incredibly informative and proposed many ways in which research projects can take into consideration the plurality of identities. Soliciting the engagement of patients from Indigenous communities comes with its challenges and researchers should be prepared for them, namely: restoring confidence in the research process and ensuring that patient engagement is always trauma-informed, intersectional, and based on reflective learning.
By merging different types of knowledge (academic, professional and experiential), research environments foster an authentic co-construction of care, services and policies. Patient-oriented research highlights the importance of consolidating networks and building a sense of belonging. Researchers should invest time and resources into the creation of informal/formal spaces that enable this co-creation by capitalizing patients’ experiential knowledge. Results from such trials should be disseminated through initiatives like the CMAJ Open’s new collection on patient-oriented research which will include an advisory panel comprising patient-researchers and patient reviewers and will cultivate a theoretical basis for patient-oriented research and patient-first incentives in co-designing care.
Collaboration between institutions and services is also primordial in ensuring the success of ambitious research projects. Success implies sustainability, and many strategies exist to successfully uphold studies or initiatives. These strategies range from attracting and retaining outstanding people to executing with integrity and meaningfully engaging all partners – all this while being resilient, flexible, willing to share control, and aware of the value-exchange with partners.
While a great number of take-home messages could be extracted from the Summit, the two days of presentations and discussions truly underscored how emphasis on lived experience leads to increased relevance, applicability and pragmatism in research. The integration of patients in research requires humour and the ability to create close bonds. . Sharing the intimate experiences patients have had with disease and the health care system, in a context that constantly reminds them of their condition, is no easy task. Raising our awareness as researchers, and minimizing health care’s existing hierarchy can help foster safe spaces.
Another major take-home message from the Summit is the importance of considering the epistemological diversity (and disagreements) that exist in collaborations between the scientific community and targeted populations. Time and resources must be invested in taming the hierarchical relationships that could constrain the main objective of patient-oriented research: capitalization of experiential knowledge. All these elements could be integrated into IBTN’s ultimate objective, which is to deliver, by 2025, an international, high-quality, behavioural trial addressing global behavioural health problems.