Is knowledge translation without patient or community engagement flawed?

Vivian R Ramsden; Norma Rabbitskin; John M Westfall; Maret Felzien; Janice Braden; Jessica Sand

doi:10.1093/fampra/cmw114

Is knowledge translation without patient or community engagement flawed?

Fam Pract. 2017 Jun 1;34(3):259-261. doi: 10.1093/fampra/cmw114.

Authors

Vivian R Ramsden¹, Norma Rabbitskin², John M Westfall³, Maret Felzien⁴, Janice Braden⁵, Jessica Sand⁶

Affiliations

¹ Department of Family Medicine, University of Saskatchewan, Saskatoon, Canada.
² Health Centre, Sturgeon Lake First Nation, Shellbrook, Canada.
³ Department of Family Medicine, University of Colorado, Aurora, CO, USA.
⁴ Northeastern Junior College, Sterling, CO, USA.
⁵ Saskatchewan Strategy for Patient-Oriented Research (SPOR) Network in Primary and Integrated Health Care Innovations (PIHCI), University of Saskatchewan, Saskatoon, Canada and.
⁶ North American Primary Care Research Group, Leawood, KS, USA.

PMID: 27920121
DOI: 10.1093/fampra/cmw114

Abstract

Background: The engagement of patients/individuals and/or communities has become increasingly important in all aspects of the research process.

Objective: The aim of this manuscript is to begin the discussion about the use and implementation of authentic engagement in the development of presentations and manuscripts which evolve from research that has engaged patients/individuals and/or communities.

Methods: Community-Based Participatory Research; Transformative Action Research.

Results and discussion: In Canada, the framework for engaging patients/individuals and/or communities is clearly outlined in Chapter 9 of the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans which indicates that when research projects involving First Nations, Inuit and Métis peoples, the peoples in these communities are to have a role in shaping/co-creating the research that affects them. It is increasingly important that presentations and manuscripts that evolve from results/findings which have engaged patients/individuals and/or communities be co-presented/co-published. Presentations are often done without patients/individuals and/or communities and manuscripts published with only academic authors. Frequently, grants submitted and subsequently funded do not consider this aspect of the process in the budget which makes integrated and outcome knowledge translation, dissemination and distribution by and with patients/individuals and/or communities difficult to facilitate.

Conclusions: This manuscript was designed to begin the discussion at various levels related to authentic engagement in the development of presentations and manuscripts which evolve from research that has engaged patients/individuals and/or communities. How will you include patients/individuals and/or communities in your presentations and publications?

Keywords: Communities; community-based participatory research; health equity; health promotion; knowledge translation patients..

MeSH terms

Community-Based Participatory Research*
Humans
Patient Participation*
Research Design
Translational Research, Biomedical / ethics*