SPOR Summit 2015: Putting Patients First
The inaugural SPOR Summit, bringing together leaders and partners from all core elements of the Strategy for Patient-Oriented Research (SPOR), was held May 19-20, 2015. Patients, policy makers, clinicians, funders, and researchers shared their experiences in building new kinds of partnerships and transformational research approaches.
The event showcased early successes in SPOR and how they were achieved. Many foundational components of SPOR have come to fruition: frameworks for patient engagement and capacity development set out common guiding principles for all SPOR partners in these areas; important infrastructure and platforms have been established that will facilitate patient-oriented research, including six SUPPORT Units across eight provinces; ACCESS Canada, the first SPOR pan-Canadian Network, was formally announced in June 2014 and will use research evidence to bring about positive change, within five years, to the care of young people with mental illness.
Summit participants shared approaches and resources that are working well and could serve as promising examples to learn from and build upon. Participants also identified ongoing barriers and challenges, and potential ways to address them collaboratively.
Some of the key themes that resonated throughout the Summit include:
- Creating meaningful roles for patients
Stakeholders in SPOR must strive to facilitate patient partnerships that go beyond tokenism. The discussions not only focused on why patient partnerships should be created, but also on key ingredients for establishing new and improved partnerships.
- Increasing and ensuring diversity
SPOR aims to realize a culture shift where stakeholders move from a mindset of finding a patient to finding the right patient partners. This refers to removing barriers to effective patient engagement and empowering patients through creative opportunities. In the ACCESS Network and the Manitoba SUPPORT Unit, for example, Indigenous partners are leading the development of new approaches to make engagement in research meaningful and accessible to broader patient populations.
- Building patient-oriented research as both science and art
What SPOR is trying to achieve is less a new method than a cultural shift, to normalize patient engagement as the way of doing research. Patient-oriented research is an art that must be balanced with robust methodologies, systemic approaches and evaluation.
- Multi-way learning
Patient-oriented research is not primarily about creating individual skills, but about building effective teams where each partners' unique expertise is valued and integrated into the full spectrum of research activities.
SPOR can play a crucial role in moving Canada from a country of great ideas to one that successfully transforms health systems to obtain better outcomes for all Canadians. This can be accomplished by all stakeholders working together, at multiple levels, to accelerate discovery and advances and share best practices to avoid duplication of efforts.
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