Defining Empowerment and Supporting Engagement Using Patient Views From the Citizen Health Information Portal: Qualitative Study.

BACKGROUND: The increasing presence of technology in health care has created new opportunities for patient engagement and with this, an intensified exploration of patient empowerment within the digital health context. While the use of technology, such as patient portals, has been positively received, a clear linkage between digital health solutions, patient empowerment, and health outcomes remains elusive. OBJECTIVE: The primary objective of this research was to explore the views of participants enrolled in an electronic health record portal access trial regarding the resultant influence of this technology on their feelings of patient empowerment. METHODS: The exploration of patient empowerment within a digital health context was done with participants in a tethered patient portal trial using interpretive description. Interpretive description is a qualitative methodology developed to pragmatically address clinical health questions. Patient demographics, self-reported health status, and self-identified technology adaptation contributed to the assessment of empowerment in this qualitative approach. RESULTS: This research produced a view of patient empowerment within the digital health context summarized in two overarching categories: (1) Being Heard and (2) Moving Forward. In each of these, two subcategories further delineate the aspects of empowerment, as viewed by these participants: Knowing More and Seeing What They See under Being Heard, and Owning Future Steps and Promoting Future Care under Moving Forward. This work also highlighted an ongoing interconnectedness between the concepts of patient empowerment, engagement, and activation and the need to further articulate the unique aspects of each of these. CONCLUSIONS: The results of this study contribute needed patient voice to the ongoing evolution of the concept of patient empowerment. In order to move toward more concrete and accurate measure of patient empowerment and engagement in digital health, there must be further consideration of what patients themselves identify as essential aspects of these complex concepts. This research has revealed relational and informational elements as two key areas of focus in the ongoing evolution of patient empowerment operationalization and measure.

Healthcare Transition in Pediatrics and Young Adults With Inflammatory Bowel Disease: A Scoping Review.

The incidence of inflammatory bowel disease has steadily increased in children within the last decade. As young adults transition into the adult healthcare system, lack of support can lead to disease exacerbations and disease-related complications. The purpose of this scoping review was to examine the current healthcare transition literature in pediatrics and young adults with inflammatory bowel disease, with a particular focus on assessment or screening tools to evaluate healthcare transition readiness. Five most relevant databases were searched. Of these, 22 articles met the inclusion criteria and key findings from these are summarized. The majority of articles focused on adolescents or young adults with inflammatory bowel disease and were primarily published in the United States. Since 2008, there has been a growing trend in publications of inflammatory bowel disease healthcare transition literature. Articles were often described as healthcare transition readiness assessment tools, patient outcomes following transition, or transition experiences and barriers. An understanding of the current literature on the readiness assessment and support strategies is required to promote an improved quality of life for pediatric and young adult patients living with inflammatory bowel disease.

Evaluating Patient Empowerment in Association With eHealth Technology: Scoping Review.

BACKGROUND: The prioritization of sustainable patient-centered care in contemporary health care has resulted in an increased focus on patient empowerment, which in turn is considered to facilitate patient independence, self-management, and self-efficacy. However, a definitional consensus of empowerment remains elusive, impeding efforts to translate the conceptual ideals of empowerment into a measurable entity associated with changes in health care behavior or outcomes. The rapid integration of technology in health care serves to add another layer of complexity in the measurability and operationalization of empowerment and helps to create a specific context in which this conceptual entity should be further examined. OBJECTIVE: The primary objective of this scoping review was to explore the concept of patient empowerment within the electronic health (eHealth) context. A further focus on the association or measurement of this concept in conjunction with tethered patient portal use was also employed. METHODS: In this scoping review, a six-step framework was used to guide the search and paper selection process. The review was initiated with two broad research questions, which are as follows: (1) What is the relationship between empowerment and the use of eHealth technologies from a patient perspective? (2) How is patient empowerment (and/or engagement or activation) influenced by accessing personal health information through a tethered patient portal? Multiple databases were employed in a comprehensive search strategy, and papers were primarily evaluated and selected for inclusion by 2 review authors, and a third author was consulted to resolve any issues in reaching consensus. RESULTS: From an initial count of 1387 publications, this review returned nine systematic or literature review papers and 19 empirical studies that pertained to patient empowerment (and/or engagement and activation) in relation to the use of tethered patient portals providing access to electronic health records (EHRs). Of the 19 empirical publications, only four were found to have used specific patient empowerment measures with significant variety in their identified conceptual elements. CONCLUSIONS: There is a persistent lack of conceptual clarity in patient empowerment research, and this has extended to study within the eHealth context. The interchangeable use or conflation of terms such as patient empowerment, engagement, and activation, has further complicated the advancement of distinct conceptual measures. To more strongly align changes in patient empowerment with supportive eHealth solutions, the challenges of achieving a consensus on how best to operationalize and measure patient empowerment must be met.