A Systematic Review of Patient-Facing Visualizations of Personal Health Data

Turchioe, Meghan Reading; Myers, Annie; Isaac, Samuel; Baik, Dawon; Grossman, Lisa V.; Ancker, Jessica S.; Creber, Ruth Masterson

doi:10.1055/s-0039-1697592

Cited by 62 publications

(35 citation statements)

References 72 publications

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“…32 Portals may increase patient understanding of the care plan 33 ; yet ways to visualize such data provided in portals needs further work to result in more meaningful use. 34 Concerns about data management (security, privacy, and reliability of data), which was a key issue in the 2013 study, 20 was not identified as a major barrier in our study. In fact, there may be a larger need for a single accurate record that travels with the patient in rural areas, as illustrated by problems in information exchange between surgeons and primary care providers.…”

Section: Comparison With the Literaturementioning

confidence: 66%

Preferred Functions of Personal Health Records in Rural Primary Health Clinics in Canada: Health Care Team Perspectives

et al. 2021

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Background Personal health records (PHR) provide opportunities for improved patient engagement, collection of patient-generated data, and overcome health-system inefficiencies. While PHR use is increasing, uptake in rural populations is lower than in urban areas. Objectives The study aimed to identify priorities for PHR functionality and gain insights into meaning, value, and use of patient-generated data for rural primary care providers. Methods We performed PHR preimplementation focus groups with rural providers and their health care teams from five primary care clinics in a sparsely populated mountainous region of British Columbia, Canada to obtain their understanding of PHR functionality, needs, and perceived challenges. Results Eight general practitioners (GP), five medical office assistants, two nurse practitioners (NP), and two registered nurses (14 females and 3 males) participated in focus groups held at their respective clinics. Providers (GPs, NPs, and RNs) had been practicing for a median of 9.5 (range = 1–38) years and had used an electronic medical record for 7.0 (1–20) years. Participants expressed interest in incorporating functionality around two-way communication and appointment scheduling, previsit data gathering, patient and provider data sharing, virtual care including visits using videoconferencing tools, and postvisit sharing of educational materials. Three further themes emerged from the focus groups: (1) the context in which the providers' practice matters, (2) the need for providing patients and providers with choice (e.g., which data to share, who gets to initiate/respond in communications, and processes around virtual care visits), and (3) perceived risks of system use (e.g., increased complexity for older patients and workload barriers for the health care team). Conclusion Rural primary care teams perceived PHR opportunities for increased patient engagement and access to patient-generated data, while worries about changes in workflow were the biggest perceived risk. Recommendations for PHR adoption in a rural primary health network include setting provider-patient expectations about response times, ability to share notes selectively, and automatically augmented note-taking from virtual-care visits.

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Section: Comparison With the Literaturementioning

confidence: 66%

Preferred Functions of Personal Health Records in Rural Primary Health Clinics in Canada: Health Care Team Perspectives

et al. 2021

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“…The data generated by the platform should be considered of value to users if it is readable, easily interpreted, and personalized. 46 The point is to make the data understandable, favor graphics and visualizations that are simple and customizable, by allowing users to filter the data according to their needs. The issue of data visualization is therefore an issue that should not be overlooked, especially in the design of technologies aimed at supporting self-care practices.…”

Section: Discussionmentioning

confidence: 99%

Co-designing a digital companion with people living with Parkinson's to support self-care in a personalized way: The eCARE-PD Study

et al. 2022

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eHealth technologies play a role in the development of integrated care models for people living with Parkinson disease by improving communication with their health care teams and support self-care practices in a personalized way. This article presents a co-design approach to designing an eHealth technology, the eCARE-PD platform, that addresses the needs and expectations of people living with Parkinson disease, generates tailored care tips, and recommends actions for managing care priorities at home. We use a co-design approach involving four main iterative phases: (1) preparation, (2) mapping, (3) testing and using, and (4) co-producing solutions and requirements. This approach uses several methods to engage people directly to design this technology. The study allowed us to identify design principles to be integrated in the development of the eCARE-PD platform. These principles incorporate the expectations of future users, which were expressed during the iterative phases of the co-design process: (a) six key design features based on users’ needs and expectations, (b) six main issues users raised during a test at home and key features for improving the design of the eCARE-PD platform, and (c) collective solutions to design an interactive, meaningful, tailored, empathic, and socially acceptable technology. The results of the successive phases of the co-design process allow us to underline the progressive constitution of a technology defined over successive iterations as a digital companion supporting the self-care process at home and having the capacity to generate tailored digital health communication.

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“…To get the most out of viewing their test results on patient portals, patients need to understand (1) what the test is for, (2) how to interpret the test, and (3) what to do in response. 40,41 Further research is needed to directly assess the impact of different data displays and user interface designs on patients' ability to achieve this level of understanding. 41 Second, among patients with diabetes, limited health literacy is typically associated with worse health outcomes and can be a barrier to patient portal use.…”

Section: Discussionmentioning

confidence: 99%

“…40,41 Further research is needed to directly assess the impact of different data displays and user interface designs on patients' ability to achieve this level of understanding. 41 Second, among patients with diabetes, limited health literacy is typically associated with worse health outcomes and can be a barrier to patient portal use. 9,42 Tieu et al have shown that despite expressing enthusiasm for patient portal use, patient portal users with limited health literacy struggle with medical terminology and a lack of literary level-appropriate health information.…”

Section: Discussionmentioning

confidence: 99%

The My Diabetes Care Patient Portal Intervention: Usability and Pre-Post Assessment

et al. 2021

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Background My Diabetes Care (MDC) is a novel, multifaceted patient portal intervention designed to help patients better understand their diabetes health data and support self-management. MDC uses infographics to visualize and summarize patients' diabetes health data, incorporates motivational strategies, and provides literacy level–appropriate educational resources. Objectives We aimed to assess the usability, acceptability, perceptions, and potential impact of MDC. Methods We recruited 69 participants from four clinics affiliated with Vanderbilt University Medical Center. Participants were given 1 month of access to MDC and completed pre- and post-questionnaires including validated measures of usability and patient activation, and questions about user experience. Results Sixty participants completed the study. Participants' mean age was 58, 55% were females, 68% were Caucasians, and 48% had limited health literacy (HL). Most participants (80%) visited MDC three or more times and 50% spent a total of ≥15 minutes on MDC. Participants' median System Usability Scale (SUS) score was 78.8 [Q1, Q3: 72.5, 87.5] and significantly greater than the threshold value of 68 indicative of “above average” usability (p < 0.001). The median SUS score of patients with limited HL was similar to those with adequate HL (77.5 [72.5, 85.0] vs. 82.5 [72.5, 92.5]; p = 0.41). Participants most commonly reported the literacy level–appropriate educational links and health data infographics as features that helped them better understand their diabetes health data (65%). All participants (100%) intended to continue to use MDC. Median Patient Activation Measure® scores increased postintervention (64.3 [55.6, 72.5] vs. 67.8 [60.6, 75.0]; p = 0.01). Conclusion Participants, including those with limited HL, rated the usability of MDC above average, anticipated continued use, and identified key features that improved their understanding of diabetes health data. Patient activation improved over the study period. Our findings suggest MDC may be a beneficial addition to existing patient portals.

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A Systematic Review of Patient-Facing Visualizations of Personal Health Data

Cited by 62 publications

References 72 publications

Preferred Functions of Personal Health Records in Rural Primary Health Clinics in Canada: Health Care Team Perspectives

Preferred Functions of Personal Health Records in Rural Primary Health Clinics in Canada: Health Care Team Perspectives

Co-designing a digital companion with people living with Parkinson's to support self-care in a personalized way: The eCARE-PD Study

The My Diabetes Care Patient Portal Intervention: Usability and Pre-Post Assessment

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