Dataset Information

The Power of Patient Engagement With Electronic Health Records as Research Participants.

ABSTRACT: Electronic health record (EHR) technology has become a central digital health tool throughout health care. EHR systems are responsible for a growing number of vital functions for hospitals and providers. More recently, patient-facing EHR tools are allowing patients to interact with their EHR and connect external sources of health data, such as wearable fitness trackers, personal genomics, and outside health services, to it. As patients become more engaged with their EHR, the volume and variety of digital health information will serve an increasingly useful role in health care and health research. Particularly due to the COVID-19 pandemic, the ability for the biomedical research community to pivot to fully remote research, driven largely by EHR data capture and other digital health tools, is an exciting development that can significantly reduce burden on study participants, improve diversity in clinical research, and equip researchers with more robust clinical data. In this viewpoint, we describe how patient engagement with EHR technology is poised to advance the digital clinical trial space, an innovative research model that is uniquely accessible and inclusive for study participants.

SUBMITTER: Pawelek J

PROVIDER: S-EPMC9308075 | biostudies-literature | 2022 Jul

REPOSITORIES: biostudies-literature

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The Power of Patient Engagement With Electronic Health Records as Research Participants.

Pawelek Jeff J Baca-Motes Katie K Pandit Jay A JA Berk Benjamin B BB Ramos Edward E

JMIR medical informatics 20220708 7

Electronic health record (EHR) technology has become a central digital health tool throughout health care. EHR systems are responsible for a growing number of vital functions for hospitals and providers. More recently, patient-facing EHR tools are allowing patients to interact with their EHR and connect external sources of health data, such as wearable fitness trackers, personal genomics, and outside health services, to it. As patients become more engaged with their EHR, the volume and variety o ...[more]

PMID: 35802410

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Project description:BackgroundEHR phenotyping offers the ability to rapidly assemble a precisely defined cohort of patients prescreened for eligibility to participate in health-related research. Even so, stakeholders in the process must still contend with the practical and ethical challenges associated with research recruitment. Patient perspectives on these matters are particularly important given that the success of research recruitment depends on patients' willingness to participate.MethodsWe conducted 15 focus groups (n = 110 participants) in four counties in diverse regions of the southeastern US: Appalachia, the Mississippi Delta, and the Piedmont area of North Carolina. Based on a hypothetical study of a behavioral intervention for type 2 diabetes, we asked about the acceptability and appropriateness of direct investigator versus physician-mediated contact with patients for research recruitment, and whether patients should be asked to opt in or opt out of further contact in response to recruitment letters.ResultsFor initial contact, nearly all participants said it would be acceptable for researchers to contact patients directly and three-fourths said that it would be acceptable for researchers to contact patients through their physicians. When we asked which would be most appropriate, a substantial majority chose direct contact. Themes that arose in the discussion included trust and transparency, decision-making power, the effect on research, and the effect on patient care. For response expectations, the vast majority of participants said both opt-in and opt-out would be acceptable-typically finding neither especially problematic and noting that both afford patients the opportunity to make their own decisions.ConclusionsExternal validity relies heavily on researchers' success enrolling eligible patients and failure to reach accrual targets is a costly and common barrier to advancing scientific knowledge. Our results suggest that patients recognize multiple advantages and disadvantages of different research recruitment strategies and place value on the implications not just for themselves, but also for researchers and healthcare providers. Our findings, including rich qualitative detail, contribute to the body of empirical and ethical literature on improving research recruitment and suggest specific ways forward as well as important areas for future research.

Project description:BackgroundHealth information technologies, including electronic health records (EHRs), have revolutionized health care delivery. These technologies promise to enhance the efficiency and quality of care through improved patient health information management. Despite the transformative potential of EHRs, the extent to which patient access contributes to increased engagement with health care services within different clinical setting remains a distinct and underexplored facet.ObjectiveThis systematic review aims to investigate the impact of patient access to EHRs on health care engagement. Specifically, we seek to determine whether providing patients with access to their EHRs contributes to improved engagement with health care services.MethodsA comprehensive systematic review search was conducted across various international databases, including Ovid MEDLINE, Embase, PsycINFO, and CINAHL, to identify relevant studies published from January 1, 2010, to November 15, 2023. The search on these databases was conducted using a combination of keywords and Medical Subject Heading terms related to patient access to electronic health records, patient engagement, and health care services. Studies were included if they assessed the impact of patient access to EHRs on health care engagement and provided evidence (quantitative or qualitative) for that. The guidelines of the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) 2020 statement were followed for study selection, data extraction, and quality assessment. The included studies were assessed for quality using the Mixed Methods Appraisal Tool, and the results were reported using a narrative synthesis.ResultsThe initial search from the databases yielded 1737 studies, to which, after scanning their reference lists, we added 10 studies. Of these 1747 studies, 18 (1.03%) met the inclusion criteria for the final review. The synthesized evidence from these studies revealed a positive relationship between patient access to EHRs and health care engagement, addressing 6 categories of health care engagement dimensions and outcomes, including treatment adherence and self-management, patient involvement and empowerment, health care communication and relationship, patient satisfaction and health outcomes, use of health care resources, and usability concerns and barriers.ConclusionsThe findings suggested a positive association between patient access to EHRs and health care engagement. The implications of these findings for health care providers, policy makers, and patients should be considered, highlighting the potential benefits and challenges associated with implementing and promoting patient access to EHRs. Further research directions have been proposed to deepen our understanding of this dynamic relationship.

Project description:BackgroundEngaging patients in the delivery of health care has the potential to improve health outcomes and patient satisfaction. Patient portals may enhance patient engagement by enabling patients to access their electronic medical records (EMRs) and facilitating secure patient-provider communication.ObjectiveThe aim of this study was to review literature describing patient portals tethered to an EMR in inpatient settings, their role in patient engagement, and their impact on health care delivery in order to identify factors and best practices for successful implementation of this technology and areas that require further research.MethodsA systematic search for articles in the PubMed, CINAHL, and Embase databases was conducted using keywords associated with patient engagement, electronic health records, and patient portals and their respective subject headings in each database. Articles for inclusion were evaluated for quality using A Measurement Tool to Assess Systematic Reviews (AMSTAR) for systematic review articles and the Quality Assessment Tool for Studies with Diverse Designs for empirical studies. Included studies were categorized by their focus on input factors (eg, portal design), process factors (eg, portal use), and output factors (eg, benefits) and by the valence of their findings regarding patient portals (ie, positive, negative, or mixed).ResultsThe systematic search identified 58 articles for inclusion. The inputs category was addressed by 40 articles, while the processes and outputs categories were addressed by 36 and 46 articles, respectively: 47 articles addressed multiple themes across the three categories, and 11 addressed only a single theme. Nineteen articles had high- to very high-quality, 21 had medium quality, and 18 had low- to very low-quality. Findings in the inputs category showed wide-ranging portal designs; patients' privacy concerns and lack of encouragement from providers were among portal adoption barriers while information access and patient-provider communication were among facilitators. Several methods were used to train portal users with varying success. In the processes category, sociodemographic characteristics and medical conditions of patients were predictors of portal use; some patients wanted unlimited access to their EMRs, personalized health education, and nonclinical information; and patients were keen to use portals for communicating with their health care teams. In the outputs category, some but not all studies found patient portals improved patient engagement; patients perceived some portal functions as inadequate but others as useful; patients and staff thought portals may improve patient care but could cause anxiety in some patients; and portals improved patient safety, adherence to medications, and patient-provider communication but had no impact on objective health outcomes.ConclusionsWhile the evidence is currently immature, patient portals have demonstrated benefit by enabling the discovery of medical errors, improving adherence to medications, and providing patient-provider communication, etc. High-quality studies are needed to fully understand, improve, and evaluate their impact.

Project description:BackgroundPatient-physician communication during clinical encounters is essential to ensure quality of care. Many studies have attempted to improve patient-physician communication. Incorporating patient priorities into agenda setting and medical decision-making are fundamental to patient-centered communication. Efficient and scalable approaches are needed to empower patients to speak up and prepare physicians to respond. Leveraging electronic health records (EHRs) in engaging patients and health care teams has the potential to enhance the integration of patient priorities in clinical encounters. A systematic approach to eliciting and documenting patient priorities before encounters could facilitate effective communication in such encounters.ObjectiveIn this paper, we report the design and implementation of a set of EHR tools built into clinical workflows for facilitating patient-physician joint agenda setting and the documentation of patient concerns in the EHRs for ambulatory encounters.MethodsWe engaged health information technology leaders and users in three health care systems for developing and implementing a set of EHR tools. The goal of these tools is to standardize the elicitation of patient priorities by using a previsit "patient important issue" questionnaire distributed through the patient portal to the EHR. We built additional EHR documentation tools to facilitate patient-staff communication when the staff records the vital signs and the reason for the visit in the EHR while in the examination room, with a simple transmission method for physicians to incorporate patient concerns in EHR notes.ResultsThe study is ongoing. The anticipated completion date for survey data collection is November 2021. A total of 34,037 primary care patients from three health systems (n=26,441; n=5136; and n=2460 separately recruited from each system) used the previsit patient important issue questionnaire in 2020. The adoption of the digital previsit questionnaire during the COVID-19 pandemic was much higher in one health care system because it expanded the use of the questionnaire from physicians participating in trials to all primary care providers midway through the year. It also required the use of this previsit questionnaire for eCheck-ins, which are required for telehealth encounters. Physicians and staff suggested anecdotally that this questionnaire helped patient-clinician communication, particularly during the COVID-19 pandemic.ConclusionsEHR tools have the potential to facilitate the integration of patient priorities into agenda setting and documentation in real-world primary care practices. Early results suggest the feasibility and acceptability of such digital tools in three health systems. EHR tools can support patient engagement and clinicians' work during in-person and telehealth visits. They could potentially exert a sustained influence on patient and clinician communication behaviors in contrast to prior ad hoc educational efforts targeting patients or clinicians.Trial registrationClinicalTrials.gov NCT03385512; https://clinicaltrials.gov/ct2/show/NCT03385512.International registered report identifier (irrid)DERR1-10.2196/30431.

Dataset Information

The Power of Patient Engagement With Electronic Health Records as Research Participants.

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The Power of Patient Engagement With Electronic Health Records as Research Participants.

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