Identifying best approaches for engaging patients and family members in health informatics initiatives: a case study of the Group Priority Sort technique

Abstract

Background: Patient engagement strategies in health service delivery have become more common in recent years. However, many healthcare organizations are challenged in identifying the best methods to engage patients in health information technology (IT) initiatives. Engaging with important stakeholders to identify effective opportunities can inform the development of a resource that addresses this issue and supports organizations in their endeavors. The purpose of this paper is to share our experience and lessons learned from applying a novel consensus-building technique in order to identify key elements for effective patient engagement in health IT initiatives. This will be done through a case study approach. Methods: Patients, family members of patients, health professionals, researchers, students, vendor representatives and individuals who work in health IT roles in health organizations were engaged through a one-day symposium in Toronto, Canada in September, 2018. During the symposium, the Group Priority Sort technique was used to obtain structured feedback from symposium attendees in the context of small group discussions. Descriptive statistics and a content analysis were undertaken to analyze the data collected through the Group Priority Sort as well as participant feedback following the symposium. Results: A total of 37 participants attended the symposium from a variety of settings and organizations. Using the Group Priority Sort technique, 30 topics were classified by priority to be included in a future resource. Participant feedback pertaining to the symposium and research methods was largely positive. Several areas of improvement, such as clarity of items, were identified from this case study.

Citizen involvement in research on technological innovations for health, care or well-being: a scoping review

“…From the 83 included records, eight were published in 2016, 14 in 2017, 15 in 2018, 17 in 2019, and 29 in 2020. Most studies were conducted in the United States (N=17) [44, 46–48, 52, 54, 71, 72, 76, 89, 94, 98, 100, 104, 107, 119, 123], followed by Canada (N=14) [42, 43, 45, 59, 65, 69, 70, 81, 86–88, 92, 95, 105], the United Kingdom (N=12) [51, 56, 57, 67, 80, 90, 96, 102, 103, 111–113], Denmark (N=6) [77, 78, 85, 106, 114, 120], and Australia (N=6) [83, 91, 108, 110, 116, 118]. Five studies were conducted in multiple countries [53, 97, 99, 109, 121], three studies were conducted in Sweden [Erlingdottir et al 2019; Gardsten 2017; Wikman et al 2018], and Norway [74, 75, 115], and two in Austria [61, 66], the Netherlands [34, 68], and Ireland [79, 117].…”

“…Other often used terms were community based participatory research (N=9) [48, 52–54, 56, 70, 71, 93, 94], co-creation (N=8) [43, 46, 58, 62, 73, 97, 107, 120], public and patient involvement (N=7) [67, 79, 90, 102, 109, 111, 114], participatory action research (N=5) [59, 68, 108, 112, 122], and user centered design (N=4) [34, 89, 92, 115]. Citizen science was only used in two records [49, 118], and usability study [47], co-production [51], human centered participatory design [84], social Justice design [87], symposium [95], community oriented approach [98], and participation in research [116] were all only used once to describe the research design.…”