Workshop Proceedings Report – Executive Summary

The full report is available upon request by contacting spor-srap@cihr-irsc.gc.ca.

An important goal of Canada's Strategy for Patient Oriented Research (SPOR) is the realization of an active collaboration between patients and researchers, health care providers and decision-makers. SPOR's National Steering Committee has requested that CIHR develop a Patient Engagement (PE) Framework and accompanying PE Strategy that will outline key opportunities for action, setting the stage for worthwhile collaborations in the identification of health research priorities as well as in the design and conduct of research projects. Patient engagement will ensure that patients play a meaningful role in the development of high‐quality, relevant health research and its translation into clinical practice and health policy. The strategy will outline opportunities to involve patients in the identification of health research priorities. It will also demonstrate the importance of involving patients in the design and conduct of research projects.

A consultative process was undertaken to develop this draft PE Framework. A workshop held in Ottawa on January 9, 2014 served as a pivotal step in the process. The one day workshop convened a cross-representation of Canadian patients and patient engagement experts from relevant partner organizations. This report summarizes the proceedings of the day in which participants were tasked to identify patients' aspirations for engagement in SPOR as well as to develop key elements and principles for realizing PE in SPOR. Participants shared experiences and lessons learned about patient engagement that can be applied to SPOR and discussed how best to engage/inform/interact with patients along the entire research process.

Participants brought a wealth of experience in patient engagement to the dialogue, including affiliations with patient and caregiver advocacy networks, academic, health and research institutions from across the country. Many patients and caregivers participated on boards or advisory groups and had experience living with diverse health conditions, including mental health, kidney disease, multiple sclerosis, diabetes, fibromyalgia, osteoarthritis, HIV, Hepatitis C, dementia and heart disease. A Discussion Document was sent out in advance to participants and was used during the workshop, summarizing initial research, the approach to developing the SPOR PE strategy and the identified areas of focus for patient engagement.

Workshop participants discussed aspirations for a successful SPOR PE strategy, developing a collective vision of what success would like in the future when the final PE strategy is implemented. The group identified the following picture of success:

  • Inclusive Mechanisms and Processes
  • Multi-Way Capacity-Building
  • Multi-Way Communication and Collaboration
  • A Common Culture Built Over Time
  • Experiential Knowledge Valued/Mobilized As Evidence
  • Patient-Informed and Directed Research
  • Shared Sense Of Purpose/Outcomes

Participants identified the following concepts as integral to this picture of success:

  • Patient involvement at all levels refers to a broad range of roles, including advocating for themselves, working with doctors and researchers, and feeling like part of the team.
  • Co-build means working together to build knowledge, to make decisions, and to design and implement research processes; co-build methodologies are needed to bring together the worlds of researchers, providers and patients.
  • The research and the care process are interlinked, so a three-way collaboration (patients/caregivers, researchers and health care providers) is needed.
  • Mechanisms and processes need to build capacity among patients, knowledge workers and researchers to work together: establishing research priorities, developing research questions, conducting research.
  • A shift is needed to value experiential knowledge as complementary and equally valid as scientific knowledge; research priorities can be informed by paying early attention to the experiential knowledge of patients.
  • A circular vision may be helpful to show how all parts of the system/people come together collectively; the principles of indigenous holistic medicine could be a guide for building knowledge.
  • Patient-provider communication needs to be grounded in mutual respect and supported by a safe, judgment-free environment.
  • Patient researchers (people who are patients first but are also researchers) can be cultural bridges/brokers, helping to build a common culture among patients and researchers because they have knowledge of "both sides".
  • Professional resistance issues are real and need attention: some providers/researchers might not appreciate patients being involved directly in their care or in research processes.
  • Participants discussed aspirations for patient engagement in six key focus areas: 1. Governance and Decision Making; 2. Developing Capacity for Patient Engagement; 3. Research priority setting; 4. Conducting research; 5. Supporting and Implementing Research; and, 6. Training and Mentoring. Table A summarizes the major ideas generated by participants for strategic elements of the SPOR PE strategy.

Key points raised in the closing discussion were:

  • CIHR has made significant progress in the past year since convening the CIHR Citizen Engagement Workshop in 2013. There are examples of good relationships between patients and researchers, e.g., HIV and Hepatitis C co-infection.
  • In the Canadian context, we are still in the process of making patient engagement "a value proposition". Demonstrating value and impact through concrete examples here and elsewhere will be key to implementing and sustaining the SPOR PE strategy.
  • Moving forward, it will be important to focus on the positive, incremental steps that can be taken to work towards the transformative vision developed by workshop participants.

Workshop results will be shared with SUPPORT Units and a draft PE framework will be presented to the SPOR working group in late January 2014. After refinement, the draft PE framework will be presented to the SPOR Steering Committee in February 2014. SPOR staff will be in communication with participants to share the workshop proceedings report, to circulate the participant e-mail list, and to provide updates on SPOR's PE activities moving forward.

Table A

Major ideas for strategic elements for the SPOR Patient Engagement strategy

Focus area Major ideas
Governance and Decision-Making
  1. Provide training and orientation in an inclusive way.
  2. Make patient partnership mandatory at all decision-making levels: essential to meet quorum.
  3. Find ways to bring patient, family, caregiver experiential knowledge to decision-making; from the beginning and through all key points of decision, e.g., bring patient, family, caregiver story to all meetings.
  4. Provide oversight and support from CIHR to ensure groups are having meaningful partnerships in governance.
Developing Capacity for Patient Engagement
  1. Identify partners who provide effective PE or best practices.
  2. Provide funding contingent upon a robust PE plan (capacity-building).
  3. Take a leadership role in coordinating resources for capacity development.
Research Priority-Setting
  1. Develop open mechanisms for the sharing of patient experiences.
  2. Change "patients are involved" to "patients are partners".
  3. Ensure realistic expectations of patients and researchers regarding levels of involvement – patients should be able to choose the level.
  4. Develop an organization that will support recruitment of a representative patient population.
Functional areas conducting research (only discussed in one round)
  1. Consider the full patient life cycle/experience in research design, beyond the limits of short-term research studies, e.g., provide support and follow-up.
  2. Integrate patients into research processes, including but not limited to: developing research questions, refining research objectives, and selecting outcome measures.
Supporting and implementing research
  1. Support Units – Use the knowledge and learning of patients in ongoing discovery and direction of research, e.g., Plan-Do-Study-Act approach, continually building knowledge.
  2. Implementation Strategy – Do plain language translation of research findings, involving patients and researchers in knowledge translation.
  3. Train and prepare patients to conduct interviews/focus groups with other patients about their experiences; recognizes inherent empathy and potential for rich data.
  4. Involve patients in quantitative and qualitative research to identify/guide asking the right research questions.
Training and mentoring
  1. Provide training in scientific research literacy, i.e., Research 101 for patients.
  2. Utilize experiential (patient) and scientific mentors: reciprocal learning relationship.
  3. Make a long-term commitment to PE infrastructure and funding to ensure inclusive recruitment, training and mentoring.
  4. Create realistic expectations and manage relationships.
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