Background Patient portals have emerged as a recognized digital health strategy. To date, research on patient portals has grown rapidly. However, there has been limited evaluation of the growing body of evidence on portal availability, use, clinical or health behavior and outcomes, and portal adoption over time. Objective This paper aims to comprehensively consolidate the current state of evidence on patient portals using the umbrella review methodology, introduce our approach for evaluating evidence for quantitative and qualitative findings presented in included systematic reviews, and present a knowledge translation tool that can be used to inform all stages of patient portal adoption. Methods For this study, a modified version of the Joanna Briggs Institute umbrella review method was used. Multiple databases were searched for systematic reviews focused on patient portals, and the final sample included 14 reviews. We conducted a meta-level synthesis of findings from quantitative, qualitative, and mixed methods primary studies reported in systematic reviews. We organized the umbrella review findings according to the Clinical Adoption Meta-Model (CAMM). Vote-counting, GRADE (Grading of Recommendations, Assessment, Development, and Evaluations), and CERQual (Confidence in the Evidence from Review of Qualitative Research) were used to assess the umbrella review evidence. Results Our knowledge translation tool summarizes the findings in the form of an evidence map. Organized by the CAMM categories, the map describes the following factors that influence portal adoption and effects over time: patient contexts, patient's interest and satisfaction, portal design, facilitators and barriers, providers' attitudes, service utilization, behavioral effects, clinical outcomes, and patient-reported outcomes. The map lists the theories and mechanisms recognized in the included portal research while identifying the need for business models and organizational theories that can inform all stages of portal adoption. Our GRADE and CERQual umbrella review evaluation resulted in the majority of evidence being rated as moderate to low, which reflects methodological issues in portal research, insufficient number of studies, or mixed results in specific focus areas. The 2 findings with a high rating of evidence were patients' interest in using portals for communication and the importance of a simple display of information in the portals. Over 40 portal features were identified in the umbrella review, with communication through secure messaging and appointment booking mentioned in all systematic reviews. Conclusions Our umbrella review provides a meta-level synthesis to make sense of the evidence on patient portals from published systematic reviews. Unsystematic and variable reporting of portal features undermines the ability to evaluate and compare portal effects and overlooks the specific context of portal use. Research designs sensitive to the social, organizational, policy, and temporal dimensions are needed to better understand the underlying mechanisms and context that leverage the identified factors to improve portal use and effects.
BackgroundExistential and spiritual concerns are fundamental issues in palliative care and patients frequently articulate these concerns. The purpose of this study was to understand the process of engaging with existential suffering at the end of life.MethodsA grounded theory approach was used to explore processes in the context of situated interaction and to explore the process of existential suffering. We began with in vivo codes of participants' words, and clustered these codes at increasingly higher levels of abstractions until we were able to theorize.ResultsFindings suggest the process of existential suffering begins with an experience of groundlessness that results in an overarching process of Longing for Ground in a Ground(less) World, a wish to minimize the uncomfortable or anxiety-provoking instability of groundlessness. Longing for ground is enacted in three overlapping ways: by turning toward one's discomfort and learning to let go (engaging groundlessness), turning away from the discomfort, attempting to keep it out of consciousness by clinging to familiar thoughts and ideas (taking refuge in the habitual), and learning to live within the flux of instability and unknowing (living in-between).ConclusionsExistential concerns are inherent in being human. This has implications for clinicians when considering how patients and colleagues may experience existential concerns in varying degrees, in their own fashion, either consciously or unconsciously. Findings emphasize a fluid and dynamic understanding of existential suffering and compel health providers to acknowledge the complexity of fear and anxiety while allowing space for the uniquely fluid nature of these processes for each person. Findings also have implications for health providers who may gravitate towards the transformational possibilities of encounters with mortality without inviting space for less optimistic possibilities of resistance, anger, and despondency that may concurrently arise.
Objective Our scoping review examined how research on patient portals addresses health equity. Questions guiding our review were: 1) What health equity concepts are addressed in patient portal research—both explicitly and implicitly? 2) What are the gaps? 3) Is the potential for ehealth-related health inequities explicitly acknowledged in studies on patient portals? 4) What novel approaches and interventions to reduce health inequities are tested in patient portal research? Materials and Methods We searched 4 databases. Search terms included “patient portal” in combination with a comprehensive list of health equity terms relevant in ehealth context. Authors independently reviewed the papers during initial screening and full-text review. We applied the eHealth Equity Framework to develop search terms and analyze the included studies. Results Based on eHealth Equity Framework categories, the main findings generated from 65 reviewed papers were governance structures, ehealth policies, and cultural and societal values may further inequities; social position of providers and patients introduces differential preferences in portal use; equitable portal implementation can be supported through diverse user-centered design; and intermediary strategies are typically recommended to encourage portal use across populations. Discussion The predominant focus on barriers in portal use may be inadvertently placing individual responsibility in addressing these barriers on patients already experiencing the greatest health disparities. This approach may mask the impact of the socio-technical-economic-political context on outcomes for different populations. Conclusion To support equitable health outcomes related to patient portals we need to look beyond intermediary initiatives and develop equitable strategies across policy, practice, research, and implementation.
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