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How patients want to engage with their personal health record: a qualitative study.

ABSTRACT: To assess factors related to use and non-use of a sophisticated interactive preventive health record (IPHR) designed to promote uptake of 18 recommended clinical preventive services; little is known about how patients want to use or be engaged by such advanced information tools.Descriptive and interpretive qualitative analysis of transcripts and field notes from focus groups of the IPHR users and of patients who were invited but did not use the IPHR (non-users). Grounded theory techniques were then applied via an editing approach for key emergent themes.Primary care patients in eight practices of the Virginia Ambulatory Care Outcomes Research Network (ACORN).Three focus groups involved a total of 14 IPHR users and two groups of non-users totalled 14 participants.For themes identified (relevance, trust and functionality) participants indicated that endorsement and use of the IPHR by their personal clinician was vital. In particular, participants' comments linked the IPHR use to: (1) integrating the IPHR into current care, (2) promoting effective patient-clinician encounters and communication and (3) their confidence in the accuracy, security and privacy of the information.In addition to patients' stated desires for advanced functionality and information accuracy and privacy, successful adoption of the IPHRs by primary care patients depends on such technology's relevance, and on its promotion via integration with primary care practices' processes and the patient-clinician relationship. Accordingly, models of technological success and adoption, when applied to primary care, may need to include the patient-clinician relationship and practice workflow. These findings are important for healthcare providers, the information technology industry and policymakers who share an interest in encouraging patients to use personal health records.Clinicaltrials.gov identifier: NCT00589173.

SUBMITTER: Kerns JW

PROVIDER: S-EPMC3731712 | biostudies-literature | 2013 Jul

REPOSITORIES: biostudies-literature

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How patients want to engage with their personal health record: a qualitative study.

Kerns John William JW Krist Alexander H AH Longo Daniel R DR Kuzel Anton J AJ Woolf Steven H SH

BMJ open 20130730 7

<h4>Objective</h4>To assess factors related to use and non-use of a sophisticated interactive preventive health record (IPHR) designed to promote uptake of 18 recommended clinical preventive services; little is known about how patients want to use or be engaged by such advanced information tools.<h4>Design</h4>Descriptive and interpretive qualitative analysis of transcripts and field notes from focus groups of the IPHR users and of patients who were invited but did not use the IPHR (non-users). ...[more]

PMID: 23901027

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Project description:ObjectiveTo evaluate the effect of electronic health record (EHR)-integrated digital health tools comprised of a checklist and video on transitions-of-care outcomes for patients preparing for discharge.Materials and methodsEnglish-speaking, general medicine patients (>18 years) hospitalized at least 24 hours at an academic medical center in Boston, MA were enrolled before and after implementation. A structured checklist and video were administered on a mobile device via a patient portal or web-based survey at least 24 hours prior to anticipated discharge. Checklist responses were available for clinicians to review in real time via an EHR-integrated safety dashboard. The primary outcome was patient activation at discharge assessed by patient activation (PAM)-13. Secondary outcomes included postdischarge patient activation, hospital operational metrics, healthcare resource utilization assessed by 30-day follow-up calls and administrative data and change in patient activation from discharge to 30 days postdischarge.ResultsOf 673 patients approached, 484 (71.9%) enrolled. The proportion of activated patients (PAM level 3 or 4) at discharge was nonsignificantly higher for the 234 postimplementation compared with the 245 preimplementation participants (59.8% vs 56.7%, adjusted OR 1.23 [0.38, 3.96], P = .73). Postimplementation participants reported 3.75 (3.02) concerns via the checklist. Mean length of stay was significantly higher for postimplementation compared with preimplementation participants (10.13 vs 6.21, P < .01). While there was no effect on postdischarge outcomes, there was a nonsignificant decrease in change in patient activation within participants from pre- to postimplementation (adjusted difference-in-difference of -16.1% (9.6), P = .09).ConclusionsEHR-integrated digital health tools to prepare patients for discharge did not significantly increase patient activation and was associated with a longer length of stay. While issues uncovered by the checklist may have encouraged patients to inquire about their discharge preparedness, other factors associated with patient activation and length of stay may explain our observations. We offer insights for using PAM-13 in context of real-world health-IT implementations.Trial registrationNIH US National Library of Medicine, NCT03116074, clinicaltrials.gov.

Project description:BackgroundHealth care technologies can help improve workers' health and productivity by supporting workplace health promotion. A personal health record app is used to manage medical data such as results from medical checkups, which facilitates decision making for medical personnel. However, an analysis of users' technology acceptance is required to provide appropriate services based on personal health record apps.ObjectiveThe purpose of this study was to analyze the factors influencing the behavioral intention of health experts and workers to use an app in workers' health centers and to examine differences in their perception of the main variables.MethodsThe study involved health experts and workers who visited 21 workers' health centers in Korea to verify a research model in which perceived risk was added to the unified theory of acceptance and use of technology, a representative theory of information technology acceptance. After receiving ethical approval from the Korea National Institute for Bioethics Policy, 1050 questionnaires were distributed over 7 weeks with cooperation of the Korea Occupational Safety and Health Agency. A multiple linear regression analysis and multigroup path analysis were performed to verify the hypotheses, and independent samples t tests were performed to analyze differences between workers' and health experts' perception of the main variables.ResultsThe analysis included data from 866 respondents (687 workers and 179 health experts). Effort expectancy (beta=.08, P=.03), social influence (beta=.43, P<.001), performance expectancy (beta=.07, P=.008), and facilitating conditions (beta=.13, P<.001) exerted significant positive effects on behavioral intention, whereas perceived risk (beta=-.29, P<.001) exerted a significant negative effect on behavioral intention. Performance expectancy had a significant effect on path differences depending on gender (critical ratio=-3.38) and age (critical ratio=1.97). Workers' mean scores for the main variables were higher relative to those of health experts for all remaining variables except perceived risk, and significant differences were observed for all remaining variables except facilitating condition.ConclusionsSocial influence exerted the strongest effect on behavioral intention to use the personal health record app. Consequently, it is necessary to coordinate health promotion activities in the workplace as well as the operational direction of community institutions such as in workers' health centers to allow workers to manage their own health via continuous use of the app. In addition, the app should be developed based on a requirement analysis of the balance between both interest groups in consideration of differences in perspective between consumers and service providers.

Project description:BackgroundTo improve chronic disease outcomes, self-management is an effective strategy. An electronic personal health record (ePHR) is a promising tool with the potential to support chronic patient's education, counseling, and self-management. Fitting ePHRs within the daily practices of chronic care providers and chronic patients requires user-centered design approaches. We aimed to understand users' needs and requirements in chronic kidney disease (CKD) care to consider in the design of an ePHR to facilitate its implementation, adoption, and use.MethodsA qualitative study was conducted in a major Iranian nephrology center including inpatient and outpatient settings in 2019. We conducted 28 semi-structured interviews with CKD patients, nurses, and adult nephrologists. To confirm or modify the requirements extracted from the interviews, a focus group was also held. Data were analyzed to extract especially those requirements that can facilitate implementation, adoption, and sustained use based on the PHR adoption model and the unified theory of acceptance and use of technology.ResultsParticipants requested an ePHR that provides access to up to date patient information, facilitates patient-provider communication, and increases awareness about patient individualized conditions. Participants expected a system that is able to cater to low patient e-health literacy and high provider workload. They requested the ePHR to include purposeful documentation of medical history, diagnostic and therapeutic procedures, tailored educational content, and scheduled care reminders. Messaging function, tailored educational content to individual patients' conditions, and controlled access to information were highly valued in order to facilitate its implementation, adoption, and use.ConclusionsWe focused on the ePHR's content and functionalities in the face of facilitators and/or barriers envisioned for its adoption in nephrology care. Designers and implementers should value CKD patients' needs and requirements for self-management such as providing personalized education and counseling (on the basis of their condition and risk factors), health literacy, and disease progression levels. The socio-technical aspects of care also need further attention to facilitate ePHR's adoption.

Project description:Patient-centered care promotes the inclusion of the most prominent and important member of the health care team, the patient, as an active participant in information exchange and decision making. Patient self-management of a chronic disease requires the patient to bridge the gap between multiple care settings and providers. Hospitalizations often disrupt established self-management routines. Access to medical information during hospitalization reflects patients' rights to partner in their own care and has the potential to improve self-management as well as promote informed decision making during and after hospitalization. The objectives of this study were to elicit the perspectives of patients with chronic disease about desired medical information content and access during hospitalization.This exploratory study incorporated a qualitative approach. The online survey included the research team created open and limited response survey, demographic and hospital characteristic questions, and the Patient Activation Measurement instrument (PAM®). Convenience and social media snowball sampling were used to recruit participants through patient support groups, email invitations, listservs, and blogs. The research team employed descriptive statistics and qualitative content analysis techniques.The study sample (n = 34) ranged in age from 20 to 76 (μ = 48; SD = 16.87), Caucasian (91%, n = 31), female (88%, n = 30) and very highly educated (64%, n = 22 were college graduates). The PAM® survey revealed a highly activated sample. Qualitative analysis of the open-ended question responses resulted in six themes: Caring for myself; I want to know everything; Include me during handoff and rounds; What I expect; You're not listening; and Tracking my health information.This study revealed that hospitalized patients want to be included in provider discussions, such as nursing bedside handoff and medical rounds. Only a few participants had smooth transitions from hospital to home. Participants expressed frustration with failures in communication among their providers during and after hospitalization and provider behaviors that interfered with patient provider communication processes. Patients also identified interest in maintaining their own health histories and information but most had to "cobble together" a myriad of methods to keep track of their evolving condition during hospitalization.

Project description:Title"I think that some culturally sensitive mental health information could have been provided": What Black mothers with preterm infants want for their mental health care: A qualitative study.BackgroundIn the United States, preterm birth (PTB) rates in Black women are 50% higher than in non-Hispanic White and Hispanic mothers. Existing discriminatory sociohistorical and contemporary health care practices have been linked to the alarmingly higher rates of PTB among Black families. While it is well-known that PTB is associated with increased mental health (MH) problems, Black women experience elevated MH burdens due to inequities along the care continuum in the neonatal intensive care unit (NICU). Consequently, culturally responsive MH care holds promises to achieve maternal MH equity. This study aimed to explore the available MH services and resources in the NICU for Black mothers with preterm infants. We also sought to discover potential recommendations and strategies for MH programs through a cultural lens.Materials and methodsSemistructured interviews were conducted with Black mothers with preterm infants using a Grounded Theory approach embedded in the Black feminist theory.ResultsEleven mothers who gave birth to a preterm infant between 2008 and 2021 participated in this study. Eight women reported not receiving MH services or resources in the NICU. Interestingly, of the three mothers who received MH referrals/services, two did so one-year postbirth and did not utilize the services. Three main themes emerged: stress and the NICU experience, coping mechanisms, and culturally appropriate MH care with diverse providers are needed. Overall, our finds suggest that MH care is not prioritized in the NICU.ConclusionBlack mothers with preterm infants encounter numerous negative and stressful experiences that exacerbate their MH during and beyond the NICU. However, MH services in the NICU and follow-up services are scarce. Mothers in this study endorsed creating culturally appropriate MH programs that addresses their unique intersections.

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How patients want to engage with their personal health record: a qualitative study.

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How patients want to engage with their personal health record: a qualitative study.

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