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Development of a tethered personal health record framework for early end-of-life discussions.

ABSTRACT: End-of-life planning, known as advance care planning (ACP), is associated with numerous positive outcomes, such as improved patient satisfaction with care and improved patient quality of life in terminal illness. However, patient-provider ACP conversations are rarely performed or documented due to a number of barriers, including time required, perceived lack of skill, and a limited number of resources. Use of tethered personal health records (PHRs) may help streamline ACP conversations and documentations for outpatient workflows. Our objective was to develop an ACP-PHR framework that would be for use in a primary care, outpatient setting.Qualitative content analysis of focus groups and cognitive interviews (participatory design).A novel PHR-ACP tool was developed and tested using data and feedback collected from 4 patient focus groups (n = 13), 1 provider focus group (n = 4), and cognitive interviews (n = 22).Patient focus groups helped develop a focused, 4-question PHR communication tool. Cognitive interviews revealed that, while patients felt framework content and workflow were generally intuitive, minor changes to content and workflow would optimize the framework.A focused framework for electronic ACP communication using a patient portal tethered to the PHR was developed. This framework may provide an efficient way to have ACP conversations in busy outpatient settings.

SUBMITTER: Bose-Brill S

PROVIDER: S-EPMC5219928 | biostudies-literature | 2016 Jun

REPOSITORIES: biostudies-literature

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Development of a tethered personal health record framework for early end-of-life discussions.

Bose-Brill Seuli S Kretovics Matthew M Ballenger Taylor T Modan Gabriella G Lai Albert A Belanger Lindsay L Koesters Stephen S Pressler-Vydra Taylor T Wills Celia C

The American journal of managed care 20160601 6

<h4>Objectives</h4>End-of-life planning, known as advance care planning (ACP), is associated with numerous positive outcomes, such as improved patient satisfaction with care and improved patient quality of life in terminal illness. However, patient-provider ACP conversations are rarely performed or documented due to a number of barriers, including time required, perceived lack of skill, and a limited number of resources. Use of tethered personal health records (PHRs) may help streamline ACP conv ...[more]

PMID: 27355808

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Project description:BackgroundEnd-of-life discussions (EOLds) occur infrequently until cancer patients become terminally ill.MethodsTo identify factors associated with the timing of EOLds, we conducted a nationwide survey of 864 medical oncologists. We surveyed the timing of EOLds held with advanced cancer patients regarding prognosis, hospice, site of death, and do-not-resuscitate (DNR) status; and we surveyed physicians' experience of EOLds, perceptions of a good death, and beliefs regarding these issues. Multivariate analyses identified determinants of early discussions.ResultsAmong 490 physicians (response rate: 57%), 165 (34%), 65 (14%), 47 (9.8%), and 20 (4.2%) would discuss prognosis, hospice, site of death, and DNR status, respectively, "now" (i.e., at diagnosis) with a hypothetical patient with newly diagnosed metastatic cancer. In multivariate analyses, determinants of discussing prognosis "now" included the physician perceiving greater importance of autonomy in experiencing a good death (odds ratio [OR]: 1.34; p = .014), less perceived difficulty estimating the prognosis (OR: 0.77; p = .012), and being a hematologist (OR: 1.68; p = .016). Determinants of discussing hospice "now" included the physician perceiving greater importance of life completion in experiencing a good death (OR: 1.58; p = .018), less discomfort talking about death (OR: 0.67; p = .002), and no responsibility as treating physician at end of life (OR: 1.94; p = .031). Determinants of discussing site of death "now" included the physician perceiving greater importance of life completion in experiencing a good death (OR: 1.83; p = .008) and less discomfort talking about death (OR: 0.74; p = .034). The determinant of discussing DNR status "now" was less discomfort talking about death (OR: 0.49; p = .003).ConclusionReflection by oncologists on their own values regarding a good death, knowledge about validated prognostic measures, and learning skills to manage discomfort talking about death is helpful for oncologists to perform appropriate EOLds.Implications for practiceOncologists' own perceptions about what is important for a "good death," perceived difficulty in estimating the prognosis, and discomfort in talking about death influence their attitudes toward end-of-life discussions. Reflection on their own values regarding a good death, knowledge about validated prognostic measures, and learning skills to manage discomfort talking about death are important for improving oncologists' skills in facilitating end-of-life discussions.

Project description:Demand is emerging for personal health records (PHRs), a patient-centric digital tool for engaging in shared decision-making and healthcare data management. This study uses a RE-AIM framework to explore rural patients and providers' perceptions prior to and following implementation of a PHR. Health care providers and their patients were recruited from early-adopter patient medical home clinics and a local patient advisory group. Focus groups were used to explore patient and provider pre-implementation perceptions of PHRs and post-implementation provider perspectives. Patients were invited through participating clinics to use the PHR. An implementation process evaluation was conducted. Multiple methods and data sources were used and included pre-/post-intervention patient surveys, provider interviews, and PHR/EHR administrative data. Both patient and provider focus groups described PHRs as providing a comprehensive health story and enhanced communication. Patients prioritized collection of health promotion data while providers endorsed health-related, clinical data. Both groups expressed the need for managing expectations and setting boundaries on PHR use. The evaluation indicated Reach: 16% of targeted patients participated and an additional 127 patients used the PHR as a tool during the COVID-19 pandemic. Effectiveness: Patient satisfaction with use was neutral, with no significant changes to quality of life, self-efficacy, or patients' activation. Adoption: 44% of eligible clinics participated, primarily those operated publicly versus privately, in smaller communities, and farther from a regional hospital. Implementation: Despite system interoperability expectations, at time of roll out, information exchange standards had not been reached. Additional implementation complications arose from the onset of the pandemic. One clinic on-boarded additional patients resulting in a rapid spike in PHR use. Maintenance: All clinics discontinued PHR within the study period, citing several key barriers to use. RE-AIM offers a valuable process evaluation framework for a comprehensive depiction of impact, and how to drive future success. Interoperability, patient agency and control, and provider training and support are critical obstacles to overcome in PHR implementation.

Project description:Personal health record (PHR)-based health care management systems can improve patient engagement and data-driven medical diagnosis in a clinical setting.The purpose of this study was (1) to demonstrate the development of an electronic health record (EHR)-tethered PHR app named MyHealthKeeper, which can retrieve data from a wearable device and deliver these data to a hospital EHR system, and (2) to study the effectiveness of a PHR data-driven clinical intervention with clinical trial results.To improve the conventional EHR-tethered PHR, we ascertained clinicians' unmet needs regarding PHR functionality and the data frequently used in the field through a cocreation workshop. We incorporated the requirements into the system design and architecture of the MyHealthKeeper PHR module. We constructed the app and validated the effectiveness of the PHR module by conducting a 4-week clinical trial. We used a commercially available activity tracker (Misfit) to collect individual physical activity data, and developed the MyHealthKeeper mobile phone app to record participants' patterns of daily food intake and activity logs. We randomly assigned 80 participants to either the PHR-based intervention group (n=51) or the control group (n=29). All of the study participants completed a paper-based survey, a laboratory test, a physical examination, and an opinion interview. During the 4-week study period, we collected health-related mobile data, and study participants visited the outpatient clinic twice and received PHR-based clinical diagnosis and recommendations.A total of 68 participants (44 in the intervention group and 24 in the control group) completed the study. The PHR intervention group showed significantly higher weight loss than the control group (mean 1.4 kg, 95% CI 0.9-1.9; P<.001) at the final week (week 4). In addition, triglyceride levels were significantly lower by the end of the study period (mean 2.59 mmol/L, 95% CI 17.6-75.8; P=.002).We developed an innovative EHR-tethered PHR system that allowed clinicians and patients to share lifelog data. This study shows the effectiveness of a patient-managed and clinician-guided health tracker system and its potential to improve patient clinical profiles.ClinicalTrials.gov NCT03200119; https://clinicaltrials.gov/ct2/show/NCT03200119 (Archived by WebCite at http://www.webcitation.org/6v01HaCdd).

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Development of a tethered personal health record framework for early end-of-life discussions.

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Development of a tethered personal health record framework for early end-of-life discussions.

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