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

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. CONCLUSIONS: The Group Priority Sort technique was an efficient method for obtaining valuable suggestions from a diverse group of stakeholders, including patients and family members. The specific priorities and feedback obtained from the symposium will be incorporated into a resource for healthcare organizations to aid them in engaging patients in health IT initiatives. Additionally, five important considerations were identified when conducting future work with the Group Priority Sort technique and are outlined in this paper.

A Data-Driven Approach to Appraisal and Selection at a Domain Data Repository.

Social scientists are producing an ever-expanding volume of data, leading to questions about appraisal and selection of content given finite resources to process data for reuse. We analyze users' search activity in an established social science data repository to better understand demand for data and more effectively guide collection development. By applying a data-driven approach, we aim to ensure curation resources are applied to make the most valuable data findable, understandable, accessible, and usable. We analyze data from a domain repository for the social sciences that includes over 500,000 annual searches in 2014 and 2015 to better understand trends in user search behavior. Using a newly created search-to-study ratio technique, we identified gaps in the domain data repository's holdings and leveraged this analysis to inform our collection and curation practices and policies. The evaluative technique we propose in this paper will serve as a baseline for future studies looking at trends in user demand over time at the domain data repository being studied with broader implications for other data repositories.