Albertans for Health Research Network: Form, Fit, and Function

Author:

Rasiah Jananee123ORCID,Manafò Elizabeth12ORCID,Krawec Kiara12ORCID,Nielssen Ingrid245,Amirav Israel4,Macphail Emily CM5,Lavigne Lise-Anne6,Asis Sheila6

Affiliation:

1. Patient Engagement Platform, Alberta SPOR SUPPORT Unit, Alberta, Canada

2. Faculty of Health Disciplines, Athabasca University, Alberta, Canada

3. Faculty of Nursing, University of Alberta, Alberta, Canada

4. Department of Pediatrics, University of Alberta, Alberta, Canada

5. Cumming School of Medicine, University of Calgary, Alberta, Canada

6. Patient Partner

Abstract

The patient engagement (PE) platform staff of Alberta Strategy for Patient Oriented Research Support for People and Patient Oriented Research Trials Unit developed a patient-powered PE network called Albertans for Health Research Network (AB4HR); an enhanced tool to better connect patient partners and researchers online. AB4HR was developed in response to an identified need—a user-friendly online forum for both patient partners and researchers to access, so that they can better work together, as partners, in health research. We codesigned AB4HR and identified ways to improve the form, fit, and function of an existing registry through discussion groups with patient partners and researchers. We found 3 main themes derived from the perspective shared by patient partners and researchers. Patient partners and researchers agreed that the existing registry provides a forum to connect with one another in an easy, low-barrier way. However, there were opportunities for improvement with AB4HR, including possibilities for greater interaction between patient partners and researchers to promote more collaborative partnerships.

Funder

Alberta Innovates

Publisher

SAGE Publications

Subject

Health Policy,Health (social science),Leadership and Management

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