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      Using a Personal Health Library–Enabled mHealth Recommender System for Self-Management of Diabetes Among Underserved Populations: Use Case for Knowledge Graphs and Linked Data

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          Abstract

          Background

          Traditionally, digital health data management has been based on electronic health record (EHR) systems and has been handled primarily by centralized health providers. New mechanisms are needed to give patients more control over their digital health data. Personal health libraries (PHLs) provide a single point of secure access to patients' digital health data and enable the integration of knowledge stored in their digital health profiles with other sources of global knowledge. PHLs can help empower caregivers and health care providers to make informed decisions about patients’ health by understanding medical events in the context of their lives.

          Objective

          This paper reports the implementation of a mobile health digital intervention that incorporates both digital health data stored in patients’ PHLs and other sources of contextual knowledge to deliver tailored recommendations for improving self-care behaviors in diabetic adults.

          Methods

          We conducted a thematic assessment of patient functional and nonfunctional requirements that are missing from current EHRs based on evidence from the literature. We used the results to identify the technologies needed to address those requirements. We describe the technological infrastructures used to construct, manage, and integrate the types of knowledge stored in the PHL. We leverage the Social Linked Data (Solid) platform to design a fully decentralized and privacy-aware platform that supports interoperability and care integration. We provided an initial prototype design of a PHL and drafted a use case scenario that involves four actors to demonstrate how the proposed prototype can be used to address user requirements, including the construction and management of the PHL and its utilization for developing a mobile app that queries the knowledge stored and integrated into the PHL in a private and fully decentralized manner to provide better recommendations.

          Results

          To showcase the main features of the mobile health app and the PHL, we mapped those features onto a framework comprising the user requirements identified in a use case scenario that features a preventive intervention from the diabetes self-management domain. Ongoing development of the app requires a formative evaluation study and a clinical trial to assess the impact of the digital intervention on patient-users. We provide synopses of both study protocols.

          Conclusions

          The proposed PHL helps patients and their caregivers take a central role in making decisions regarding their health and equips their health care providers with informatics tools that support the collection and interpretation of the collected knowledge. By exposing the PHL functionality as an open service, we foster the development of third-party applications or services and provide motivational technological support in several projects crossing different domains of interest.

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          Most cited references45

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          Grand challenges in clinical decision support.

          There is a pressing need for high-quality, effective means of designing, developing, presenting, implementing, evaluating, and maintaining all types of clinical decision support capabilities for clinicians, patients and consumers. Using an iterative, consensus-building process we identified a rank-ordered list of the top 10 grand challenges in clinical decision support. This list was created to educate and inspire researchers, developers, funders, and policy-makers. The list of challenges in order of importance that they be solved if patients and organizations are to begin realizing the fullest benefits possible of these systems consists of: improve the human-computer interface; disseminate best practices in CDS design, development, and implementation; summarize patient-level information; prioritize and filter recommendations to the user; create an architecture for sharing executable CDS modules and services; combine recommendations for patients with co-morbidities; prioritize CDS content development and implementation; create internet-accessible clinical decision support repositories; use freetext information to drive clinical decision support; mine large clinical databases to create new CDS. Identification of solutions to these challenges is critical if clinical decision support is to achieve its potential and improve the quality, safety and efficiency of healthcare.
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            Patient experiences and attitudes about access to a patient electronic health care record and linked web messaging.

            Patient access to their electronic health care record (EHR) and Web-based communication between patients and providers can potentially improve the quality of health care, but little is known about patients' attitudes toward this combined electronic access. The objective of our study was to evaluate patients' values and perceptions regarding Web-based communication with their primary care providers in the context of access to their electronic health care record. We conducted an online survey of 4,282 members of the Geisinger Health System who are registered users of an application (MyChart) that allows patients to communicate electronically with their providers and view selected portions of their EHR. To supplement the survey, we also conducted focus groups with 25 patients who were using the system and conducted one-on-one interviews with ten primary care clinicians. We collected and analyzed data on user satisfaction, ease of use, communication preferences, and the completeness and accuracy of the patient EHR. A total of 4,282 registered patient EHR users were invited to participate in the survey; 1,421 users (33%) completed the survey, 60% of them female. The age distribution of users was as follows: 18 to 30 (5%), 31 to 45 (24%), 46 to 64 (54%), 65 and older (16%). Using a continuous scale from 1 to 100, the majority of users indicated that the system was easy to use (mean scores ranged from 78 to 85) and that their medical record information was complete, accurate, and understandable (mean scores ranged from 65 to 85). Only a minority of users was concerned about the confidentiality of their information or about seeing abnormal test results after receiving only an explanatory electronic message from their provider. Patients preferred e-mail communication for some interactions (e.g., requesting prescription renewals, obtaining general medical information), whereas they preferred in-person communication for others (e.g., getting treatment instructions). Telephone or written communication was never their preferred communication channel. In contrast, physicians were more likely to prefer telephone communication and less likely to prefer e-mail communication. Patients' attitudes about the use of Web messaging and online access to their EHR were mostly positive. Patients were satisfied that their medical information was complete and accurate. A minority of patients was mildly concerned about the confidentiality and privacy of their information and about learning of abnormal test results electronically. Clinicians were less positive about using electronic communication than their patients. Patients and clinicians differed substantially regarding their preferred means of communication for different types of interactions.
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              Patient-centered medicine. A professional evolution.

              American medicine is in the midst of a professional evolution driven by a refocusing of medicine's regard for the patient's viewpoint. Historically, medicine has been largely physician centered, but physicians have begun to incorporate patients' perspectives in ways that increasingly matter. Some call this shift "patient-centered" care. In support of the view that this refocusing reflects a broad professional shift, we describe the evolution to patient-centered care in many areas of medicine: patient care, health-related law, medical education, research, and quality assessment.
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                Author and article information

                Contributors
                Journal
                JMIR Form Res
                JMIR Form Res
                JFR
                JMIR Formative Research
                JMIR Publications (Toronto, Canada )
                2561-326X
                March 2021
                16 March 2021
                : 5
                : 3
                : e24738
                Affiliations
                [1 ] Oak Ridge National Laboratory Center for Biomedical Informatics, Department of Pediatrics College of Medicine The University of Tennessee Health Science Center Memphis, TN United States
                [2 ] Center for Health System Improvement College of Medicine The University of Tennessee Health Science Center Memphis, TN United States
                Author notes
                Corresponding Author: Arash Shaban-Nejad ashabann@ 123456uthsc.edu
                Author information
                https://orcid.org/0000-0002-5363-2541
                https://orcid.org/0000-0002-9662-3338
                https://orcid.org/0000-0001-8807-0019
                https://orcid.org/0000-0003-2047-4759
                Article
                v5i3e24738
                10.2196/24738
                8075073
                33724197
                0414771a-d9b1-4f4e-82fb-0b28dd48c53b
                ©Nariman Ammar, James E Bailey, Robert L Davis, Arash Shaban-Nejad. Originally published in JMIR Formative Research (http://formative.jmir.org), 16.03.2021.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Formative Research, is properly cited. The complete bibliographic information, a link to the original publication on http://formative.jmir.org, as well as this copyright and license information must be included.

                History
                : 2 October 2020
                : 26 October 2020
                : 8 December 2020
                : 12 February 2021
                Categories
                Original Paper
                Original Paper

                personal health library,mobile health,personal health knowledge graph,patient-centered design,personalized health,recommender system,observations of daily living,semantic web,privacy

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