Using Patient and Family Engagement Strategies to Improve Outcomes of Health Information Technology Initiatives: Scoping Review

Abstract

Background Many health care organizations around the world have implemented health information technologies (ITs) to enhance health service efficiency, effectiveness, and safety. Studies have demonstrated that promising outcomes of health IT initiatives can be obtained when patients and family members participate and engage in the adoption, use, and evaluation of these technologies. Despite knowing this, there is a lack of health care organizations using patient and family engagement strategies to enhance the use and adoption of health ITs, specifically. Objective This study aimed to answer the following three research questions (RQs): (1) what current frameworks or theories have been used to guide patient and family engagement in health IT adoption, use, implementation, selection, and evaluation?, (2) what studies have been done on patient and family engagement strategies in health IT adoption, use, implementation, selection, and evaluation?, and (3) what patient and family engagement frameworks, studies, or resources identified in the literature can be applied to health IT adoption, use, implementation, selection, and evaluation? Methods This scoping review used a five-step framework developed by Arksey and O’Malley and adapted by Levac et al. These steps include the following: (1) identifying the RQ, (2) identifying relevant studies, (3) selecting studies, (4) charting relevant data, and (5) summarizing and reporting the result. Retrieved academic and grey literature records were evaluated using a literature review software based on inclusion and exclusion criteria by two independent reviewers. If consensus was not achieved, two reviewers would resolve conflicts by discussion. Research findings and strategies were extracted from the studies and summarized in data tables. Results A total of 35 academic articles and 23 gray literature documents met the inclusion criteria. In total, 20 of the 35 included studies have been published since 2017. Frameworks found include the patient engagement framework developed by Healthcare Information and Management Systems Society and the patient and family engagement framework proposed by Carman et al. Effective strategies include providing patients with clear expectations and responsibilities and providing reimbursement for time and travel. The gray literature sources outlined key considerations for planning and supporting engagement initiatives such as providing patients with professional development opportunities, and embedding patients in existing governance structures. Conclusions Several studies have reported their findings regarding successful strategies to engage patients and family members in health IT initiatives and the positive impact that can emerge when patients and family members are engaged in such initiatives in an effective manner. Currently, no framework has consolidated all of the key strategies and considerations that were found in this review to guide health care organizations when engaging patients and family members in a health IT–specific project or initiative. Further research to evaluate and validate the existing strategies would be of value.

Health information technology and digital innovation for national learning health and care systems

“…A greater degree of bottom-up implementation can also facilitate valuable opportunities for involvement of patients and health-care professionals in HIT development, which is key to addressing usability issues, being responsive to concerns regarding data privacy and security, and incorporating patient-generated data into electronic PHRs. 55…”

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

“…", some participants noted that a point of friction was the clarity of the given 30 items. As mentioned above, these 30 items were items or topics of interest identified through a previous literature review and focus groups [27,28], and then re-worded for conciseness for the purposes of this research activity. While a facilitator was available to provide explanations of each item, a few participants noted that there was some additional discussion surrounding interpreting the meaning of some theme items, and perhaps supplementary explanations or definitions of the terms could be provided on paper to enhance clarity throughout the activity.…”

“…The current case study examines a novel approach for gaining consensus on how to best engage patients and family members and identify priority areas for health IT initiatives within a one-day session symposium. The use of the Group Priority Sort [24] in this case study illustrates the feasibility and ability of this approach to capitalize on preliminary findings obtained through a literature review [28] and focus groups [27], and engage a large, diverse number of stakeholders on complex and difficult to define matters such as patient engagement. As observed from the end-of-symposium survey, many participants felt that the symposium was enjoyable and that the development of a resource document from the findings of the symposium would be considered a significant and important contribution to the field of health IT.…”

“…The symposium began with a keynote speech on the topic of 'Patient Engagement in Health Informatics Research' followed by a panel talk representing patients, family members, and health professionals' experiences on collaboratively engaging in health IT initiatives. To further ensure all participants had at least a baseline understanding of the symposium's research activities, another presentation on the results of a literature review [28] and findings from focus groups with patients on the topic of patient engagement methods in health IT initiatives was delivered. The two focus groups, which were conducted prior to the symposium, surveyed the perspectives of patients and family members on patient engagement in healthcare in general, and strategies frequently used in these initiatives [27].…”

Stakeholder feedback informs investigations for chronic rhinosinusitis in cystic fibrosis

“…Incorporation of stakeholder feedback supports engaging individuals representative of the population of interest and other relevant stakeholders in ways that can include study design, outcome measure selection, subject recruitment strategies, and interpretation and/or distribution of study findings 7 . Stakeholder engagement and incorporation of feedback has been successfully employed in multiple fields, including detecting pulmonary disease progression in CF, 8 developing a protocol to improve pediatric asthma outcomes, 9 and engaging patients and family members to improve outcomes of healthcare information technology initiatives 10 …”