Strategy for Patient Oriented Research SPOR : Putting Patients First

Pam Gillett of encourages feedback and dialogue with CIHR

“Patients must be involved as much and as meaningfully as possible in order for health research to be more responsive to the needs of Canadians.”

This framework has just been released by Canadian Institutes for Health Research(CIHR)as a guiding document for patient oriented research. It establishes key concepts, principles and areas for patient engagement to be adopted by all SPOR partners, with the overall vision that patients (inclusive of individuals with personal experience of a health issue and informal caregivers, including family and friends), are active partners in health research – leading to improved health outcomes and an enhanced health care system.  The framework will be shared with SPOR stakeholders to promote and inspire a common understanding and alignment of goals for patient engagement.

Because I have been involved in a SPOR initiative as a family member, I was one of the many patient representatives from across the country invited to provide input and help shape the framework. I would like to applaud CIHR’s inclusive approach and the resulting framework! I look forward to hearing about many successful SPOR projects in the future.

Be one of the first to have a look.  What are your thoughts about patients as active partners in health research?

File below: SPOR Patient Engagement Framework_e


One comment

  1. Bill Dare

    One of the problems with ‘patient first’ approach with older people is that there is not always complete information about their cognitive abilities. Caregivers who are spouses or adult children have to fight with the medical team to explain that this older adult does not appreciate the consequences of decisions. Sometimes, in providing care to older patient with cognitive impairment, it is easier for the medical team to take the easy road and get instructions from a person who has poor insight into the consequences of their health care decision, rather than involve extended family who have to be involved with the consequences of medical interventions or lack there of.

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