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

Jananee Rasiah; Elizabeth Manafò; Kiara Krawec; Ingrid Nielssen; Israel Amirav; Emily Cm Macphail; Lise-Anne Lavigne; Sheila Asis

doi:10.1177/2374373520925245

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

J Patient Exp. 2020 Dec;7(6):973-977. doi: 10.1177/2374373520925245. Epub 2020 Jun 29.

Authors

Jananee Rasiah^{1

2

3}, Elizabeth Manafò^{1

2}, Kiara Krawec^{1

2}, Ingrid Nielssen^{2

4

5}, Israel Amirav⁴, Emily Cm Macphail⁵, Lise-Anne Lavigne⁶, Sheila Asis⁶

Affiliations

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.

Keywords: Albertans for health research; discussion groups; patient engagement; patient engagement network; patient registry.

Publication types

Case Reports