SPOR Patient Engagement WorkshopA 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.
The group identified the conditions for a successful patient engagement strategy:
- 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.
- 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.
- Multi-Way Communication and Collaboration: A safe environment of mutual respect is fostered and is characterized by honest conversations that inform and involve people.
- Experiential Knowledge Valued as Evidence: The experiential knowledge of patients, families and caregivers is mobilized and translated.
- 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.
- 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||
|Developing Capacity for Patient Engagement||
|Supporting and Implementing Research||
|Training and Mentoring||
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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