Evaluation of Experiences and Impact of Patient Engagement on e-Health Research: A Qualitative Study

Rachel Y Pan; Kendra Zhang; Arani Sivakumar; Dorothy Choi; Angel H Wang; Pauline Wijeyesekera; Catherine H Yu

doi:10.12927/hcq.2022.26775

Evaluation of Experiences and Impact of Patient Engagement on e-Health Research: A Qualitative Study

Healthc Q. 2022 Apr;24(SP):44-48. doi: 10.12927/hcq.2022.26775.

Authors

Rachel Y Pan¹, Kendra Zhang², Arani Sivakumar³, Dorothy Choi⁴, Angel H Wang⁵, Pauline Wijeyesekera⁶, Catherine H Yu⁷

Affiliations

¹ A medical student at the Temerty Faculty of Medicine, University of Toronto in Toronto, ON, with research interests in the areas of management of complex chronic medical conditions, mental health and medical education.
² A medical student at the School of Medicine, Queen's University in Kingston, ON, with research interests in global health, biopsychosocial approaches to managing chronic illnesses and the social determinants of health.
³ An MPH student at St. Michael's Hospital, Unity Health Toronto, in Toronto, ON, with research interests in the use of digital health to mediate the management of chronic conditions; diversity, equity and inclusion within healthcare; and Indigenous public health.
⁴ A research assistant and master of health design student at St. Michael's Hospital, Unity Health Toronto, in Toronto, ON, with research interests in digital health tools and medical humanities in chronic care.
⁵ A master's-prepared advanced practice nurse at the Michael Garron Hospital in Toronto, ON, with research interests that lie in three main themes: (1) leveraging technology in healthcare, (2) nursing leadership and work environments and (3) gerontology and dementia care.
⁶ Caregiver and knowledge user, who has retired after a 30-year career as a corporate secretary at the Heart and Stroke Foundation of Canada, having a passion for medical research.
⁷ An endocrinologist at the Department of Medicine, University of Toronto in Toronto, ON, with a research interest in the use of integrative health informatics tools, patient and clinician education and behaviour change, shared decision making and medical humanities in improving the quality of care of people with diabetes. She can be reached at catherine.yu@unityhealth.to.

PMID: 35467510
DOI: 10.12927/hcq.2022.26775

Abstract

Background: Health technology has increasingly moved toward adopting a "user-centred design" approach to include the user/patient throughout the innovation and design process; however, few studies have evaluated the patient's experience of such an engagement.

Objective: The aim of this study was to explore the role of patient engagement (PE) within e-health innovation research.

Method: Using qualitative descriptive methodology, semi-structured interviews were conducted with eight participants (patient partners and research/development team members).

Findings: Key themes were centred on enablers of, challenges to and methods of improving PE.

Conclusion: PE must be prioritized from study conception, explicitly programmed into study conduct and valued by integrating patient partner input.

MeSH terms

Humans
Patient Participation*
Qualitative Research
Telemedicine*