SPOR Patient Engagement Workshop

A consultative process was undertaken to develop a SPOR Patient Engagement Framework, including a national workshop held in Ottawa, Ontario, in Winter 2014.

The workshop brought together a diverse group of people from across Canada to share their knowledge, experiences, and perspectives, and served as a pivotal step in the development a new SPOR Patient Engagement Framework.

Participants brought a wealth of experience in patient engagement to the dialogue, including affiliations with patient and caregiver advocacy networks, as well as 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 illness, kidney disease, multiple sclerosis, diabetes, fibromyalgia, osteoarthritis, HIV, Hepatitis C, dementia, and heart disease.

Through a facilitated workshop we:

  • discussed aspirations for a successful SPOR Patient Engagement Framework, developing a collective vision of what success would look like in the future when a final patient engagement strategy is implemented; and
  • identified key priorities for the strategy as well as possible short- and longer-term actions.

Guest Speaker – Simon Denegri, INVOLVE

CIHR was also delighted to welcome Simon Denegri, Chair of INVOLVE and National Director for Public Participation and Engagement in Research, United Kingdom's National Institute for Health research (NIHR). Mr. Denegri shared lessons learned from England with regard to developing and implementing a successful patient engagement strategy.

Workshop outcomes

The group identified the conditions for a successful patient engagement strategy:

  1. Inclusive Mechanisms and Processes: Patient involvement at all levels is a desired aspiration. This also means shared leadership and decision-making processes in which patients are working with researchers, health care providers, and other decision-makers in collaborative research teams. This also involves the opportunity for peer-to-peer recruitment and engagement.
  2. Multi-Way Capacity Building: This ensures that the capacities of patients, researchers, and health care providers are being developed so they can work together effectively. It includes support for creating safe environments that promote honest interactions, cultural competence, training, and education.
  3. Multi-Way Communication and Collaboration: A safe environment of mutual respect is fostered and is characterized by honest conversations that inform and involve people.
  4. Experiential Knowledge Valued as Evidence: The experiential knowledge of patients, families and caregivers is mobilized and translated.
  5. Patient-Informed and Directed Research: Research approaches engage patients in collaborative methods and the research is inclusive of a range of patients. Recognition is given to a diversity of patients' needs and expectations through a range of clear roles.
  6. A Shared Sense of Purpose: All participants work together towards the goal of timely improvements to the quality of research driven by patient-oriented outcomes. Mechanisms are in place for a continuous feedback loop in which the results of patient-oriented research are communicated back to patients.

Participants also brought forward the following priorities and possible short- and longer-term actions in six focus areas: three cross-cutting themes (governance and decision-making, developing capacity for patient engagement, research priority-setting), and three functional areas (conducting research, supporting and implementing research, training and mentoring):

Focus Area Major Ideas
Governance and Decision-Making
  • Provide training and orientation in an inclusive way.
  • Make patient partnership mandatory at all decision-making levels, i.e., essential to meet quorum.
  • 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.
  • Provide oversight and support from CIHR to ensure groups are having meaningful partnerships in governance.
Developing Capacity for Patient Engagement
  • Identify partners who provide effective patient engagement or best practices.
  • Provide funding contingent upon a robust patient engagement plan to build capacity.
  • CIHR should take a leadership role in coordinating resources for capacity development.
Research Priority-Setting
  • Develop open mechanisms for the sharing of patient experiences.
  • "Patients are involved" should become "patients are partners."
  • Ensure realistic expectations of patients and researchers regarding levels of involvement – patients should be able to choose the level.
  • Develop an organization that will support recruitment of a representative patient population.
Conducting Research
  • 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.
  • Integrate patients into research processes, including but not limited to: developing research questions, refining research objectives, and selecting outcome measures.
Supporting and Implementing Research
  • 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.
  • Implementation Strategy – do plain language translation of research findings, involving patients and researchers in knowledge translation.
  • Train and prepare patients to conduct interviews/focus groups with other patients about their experiences; recognizes inherent empathy and potential for rich data.
  • Involve patients in quantitative and qualitative research to identify/guide asking the right research questions.
Training and Mentoring
  • Provide training in scientific research literacy, i.e., Research 101 for patients.
  • Utilize experiential (patient) and scientific mentors: reciprocal learning relationship.
  • Make a long-term commitment to PE infrastructure and funding to ensure inclusive recruitment, training and mentoring.
  • Create realistic expectations and manage relationships.

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 will be essential in 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.

For more information, please see the summary of the workshop proceedings report. A draft Patient Framework formulated from the workshop findings was shared with workshop participants for further refinement and feedback.

CIHR would like to acknowledge and thank all participants of the workshop for their contributions to this important event and for having such a productive dialogue. Their ongoing support and advice throughout the process is truly appreciated.

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