PREFeR (PRioritiEs For Research) Project

PA - photo from session Sept 30 2017
BC-PHCRN Patient Advisory, L-R: Marilyn Culbert, Chad Dickie, Regina Cid, Ruth Lavergne, Melody Monro, Penny Henderson, Hayley Pelletier, Brenda Jagroop, Louisa Edwards, Kent Cadogan Loftsgard, Ravin Singh, Tara Fitzgerald. Missing: Yaron Butterfield.

Primary care is where most people go first for medical help and advice when they have a health issue. It is provided by health care professionals, like family doctors, nurses, and nurse practitioners.

Despite the fact that much of primary care research focuses on studying patient needs and gaps in care, patients are not frequently included in prioritizing research ideas. To remedy this, the PREFeR Project aimed to identify patient-generated priorities for primary care research in BC, and compare patient and clinician perspectives. The project was co-led by Louisa Edwards, Melody Monro, and Ruth Lavergne, in collaboration with the BC-PHCRN Patient Advisory – a diverse group of 10 patients from all five health authorities in BC. Learn more about the Patient Advisory.

In the fall of 2017, the Patient Advisory brainstormed nearly 100 primary care experiences that stood out for them, which were grouped into core themes. Patients then reviewed, discussed, and individually ranked the 10 most important themes. The pooled results revealed the group’s top priorities for primary care.

In the spring of 2018, online surveys were carried out with BC patients and primary care providers to collect ratings of the importance of the 10 primary care topics. Online surveys were carried out with BC researchers to find out what completed, ongoing and upcoming studies were being conducted on the 10 topics.

Survey results were analyzed to look at the importance ratings of each of the 10 topics, comparing responses between patients and providers. A half-day meeting with BC patients and BC primary care providers was held to better understand the survey results.

There is considerable overlap between patient and provider priorities, including the top-rated topics of being unable to find a regular family doctor/other primary healthcare provider, support for living with chronic conditions, mental health resources and information sharing, including electronic medical records.

This project demonstrated the feasibility of including patients in priority setting exercises for primary care.

A paper describing project findings was published in BMJ Open in Spring 2019. The findings were also integrated into the BC-PHCRN Strategic Plan, and have been disseminated to the Ministry of Health and some of the regional health authorities in BC.

The PREFeR team is grateful to the BC-PCHRN Patient Advisory for spearheading the PREFeR process. We acknowledge the support of the UBC Centre for Health Services and Policy Research, the Canadian Institutes of Health Research Patient-Oriented Research Collaboration, the Michael Smith Foundation for Health Research, and the BC SUPPORT Unit.