A vision for using online portals for surveillance of patient-centered communication in cancer care.
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ABSTRACT:
SUBMITTER: Singh H
PROVIDER: S-EPMC5363702 | biostudies-other | 2015 Fall-Winter
REPOSITORIES: biostudies-other
Publications
A vision for using online portals for surveillance of patient-centered communication in cancer care.
Singh Hardeep H Arora Neeraj K NK Mazor Kathleen M KM Street Richard L RL
Patient experience journal 20150901 2
The Veterans Health Administration (VHA) is charged with providing high-quality health care, not only in terms of technical competence but also with regard to patient-centered care experiences. Patient-centered coordination of care and communication are especially important in cancer care, as deficiencies in these areas have been implicated in many cases of delayed cancer diagnosis and treatment. Additionally, because cancer care facilities are concentrated within the VHA system, geographical an ...[more]
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Project description:ImportanceMany health care systems offer adolescents access to health information through online patient portals, but few studies have explored how to engage adolescents in using and benefiting from online portals.ObjectiveTo determine how US children's hospitals have attempted to encourage adolescent portal use, barriers to engaging adolescents, and ideal future goals for engagement.Design, setting, and participantsThis qualitative study performed structured qualitative interviews with informatics administrators from children's hospitals across the US between February and July 2022. Informatics administrators were employed by US health care systems that managed a children's hospital with at least 50 dedicated pediatrics beds. Data analysis was performed from November 2022 to January 2023.Main outcomes and measuresThis study used thematic analysis of (1) current steps that health care systems had taken to engage adolescents in using their online patient portals and (2) barriers to engaging adolescents and ideal future goals and outcomes of engagement.ResultsAmong 58 total interviews with 65 informatics administrators who represented 63 hospitals across 58 health care systems, 6 themes of approaches to engaging adolescents in portal use were identified: (1) promoting and educating adolescents about portal enrollment, (2) establishing workflows to support enrollment, (3) seeking and incorporating feedback, (4) creating a culture or environment supporting engagement, (5) increasing portal utility, and (6) limited efforts. Barriers to engaging adolescents in portal use related to either (1) stakeholder investment, interest, and capabilities or (2) intersecting technical, ethical, and legal factors. Participants identified 4 ideal future efforts to engage adolescents: (1) develop adaptable private means of communication with adolescents, (2) use adolescent-centric user design, (3) enhance promotion and education about portal use, and (4) simplify and adapt workflows to encourage enrollment. Participants described 3 ideal outcomes of this future engagement: (1) provide education about current health, (2) prepare for transition to adulthood, and (3) improve digital health education of adolescents.Conclusions and relevanceIn this qualitative study of informatics administrators, children's hospitals across the US were found to have varying degrees of efforts to engage adolescents in using their portals. Most of these efforts focused on supporting adolescent enrollment, but fewer efforts focused on making the portal useful and interesting to adolescents.
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Project description:Objectives:Patients have unique information needs to help them interpret and make decisions about laboratory test results they receive on web-based portals. However, current portals are not designed in a patient-centered way and little is known on how best to harness patients' information needs to inform user-centered interface design of portals. We designed a patient-facing laboratory test result interface prototype based on requirement elicitation research and used a mixed-methods approach to evaluate this interface. Methods:After designing an initial test result display prototype, we used multiple evaluation methods, including focus group review sessions, expert consultation, and user testing, to make iterative design changes. For the user testing component, we recruited 14 patient-users to collect and analyze three types of data: comments made during testing sessions, responses to post-session questionnaires, and system usability scores. Results:Our initial patient-centered interface design included visual ranges of laboratory values, nontechnical descriptions of the test and result, and access to features to help patients interpret and make decisions about their results. Findings from our evaluation resulted in 6 design iterations of the interface. Results from user testing indicate that the later versions of the interface fulfilled patient's information needs, were perceived as usable, and provided access to information and techniques that facilitated patient's ability to derive meaning from each test result. Conclusions:Requirement elicitation studies can inform the design of a patient-facing test result interface, but considerable user-centered design efforts are necessary to create an interface that patients find useful. To promote patient engagement, health information technology designers and developers can use similar approaches to enhance user-centered software design in patient portals.
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Project description:Background/AimsPatient-centered communication (PCC) is a critical element of patient-centered care, which the Institute of Medicine (2001) promulgates as essential to improving healthcare delivery. The National Cancer Institute?s Strategic Plan for Leading the Nation (2008) calls for assessing the delivery of PCC in cancer care. However, no comprehensive measure of PCC exists, and stakeholders have different conceptualizations and assumptions about how to measure it. The purpose of our study was to develop a set of self-administered patient survey items for comprehensive PCC assessment.MethodsOur approach was grounded in the PCC conceptual framework, as presented in the NCI monograph, Patient-Centered Communication in Cancer Care (2007), which defines six functions of PCC:First, we developed a comprehensive inventory of measurement domains and subdomains, aligned with the PCC functions, by reviewing relevant literature, consulting experts, and conducting a small qualitative study involving patient interviews. Next, we inventoried over 100 survey and other measurement instruments, identifying over 1,300 possible items. We evaluated items using a systematic question appraisal system, adapted existing measures as appropriate, and developed new questions to fill identified gaps. Finally, we tested more than 200 survey questions with cancer patients (n=46) using cognitive interviews.ResultsOverall, the findings from the cognitive interviews suggest that the survey questions function well. Patients were generally able to understand the questions and apply them to their own experiences. Many participants reported that the questions reflected important aspects of their interaction with providers.ConclusionsThe draft PCC survey items can now be used for population surveillance, quality assessment, and intervention research in the context of cancer care. Although the survey items focus on PCC with respect to cancer care, many are relevant to all patients as patient-centered care is a goal for health care generally. We discuss challenges of PCC assessment, including measuring communication experiences across different care settings, types of clinicians, and stages in the cancer care continuum. Measuring PCC longitudinally over the course of care and balancing parsimony and comprehensiveness are important considerations.
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Project description:BackgroundWith the advent of electronic health record (EHR) systems, there is increasing attention on the EHR system with regard to its use in facilitating patients to play active roles in their care via secure patient portals. However, there is no systematic review to comprehensively address patient portal interventions and patient outcomes.ObjectiveThis study aimed to synthesize evidence with regard to the characteristics and psychobehavioral and clinical outcomes of patient portal interventions.MethodsIn November 2018, we conducted searches in 3 electronic databases, including PubMed, EMBASE, and Cumulative Index to Nursing and Allied Health Literature, and a total of 24 articles met the eligibility criteria.ResultsAll but 3 studies were conducted in the United States. The types of study designs varied, and samples predominantly involved non-Hispanic white and highly educated patients with sizes ranging from 50 to 22,703. Most of the portal interventions used tailored alerts or educational resources tailored to the patient's condition. Patient portal interventions lead to improvements in a wide range of psychobehavioral outcomes, such as health knowledge, self-efficacy, decision making, medication adherence, and preventive service use. Effects of patient portal interventions on clinical outcomes including blood pressure, glucose, cholesterol, and weight loss were mixed.ConclusionsPatient portal interventions were overall effective in improving a few psychological outcomes, medication adherence, and preventive service use. There was insufficient evidence to support the use of patient portals to improve clinical outcomes. Understanding the role of patient portals as an effective intervention strategy is an essential step to encourage patients to be actively engaged in their health care.
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