Personal Health Records: A Systematic Literature Review

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Abstract

Background

Information and communication technology (ICT) has transformed the health care field worldwide. One of the main drivers of this change is the electronic health record (EHR). However, there are still open issues and challenges because the EHR usually reflects the partial view of a health care provider without the ability for patients to control or interact with their data. Furthermore, with the growth of mobile and ubiquitous computing, the number of records regarding personal health is increasing exponentially. This movement has been characterized as the Internet of Things (IoT), including the widespread development of wearable computing technology and assorted types of health-related sensors. This leads to the need for an integrated method of storing health-related data, defined as the personal health record (PHR), which could be used by health care providers and patients. This approach could combine EHRs with data gathered from sensors or other wearable computing devices. This unified view of patients’ health could be shared with providers, who may not only use previous health-related records but also expand them with data resulting from their interactions. Another PHR advantage is that patients can interact with their health data, making decisions that may positively affect their health.

Objective

This work aimed to explore the recent literature related to PHRs by defining the taxonomy and identifying challenges and open questions. In addition, this study specifically sought to identify data types, standards, profiles, goals, methods, functions, and architecture with regard to PHRs.

Methods

The method to achieve these objectives consists of using the systematic literature review approach, which is guided by research questions using the population, intervention, comparison, outcome, and context (PICOC) criteria.

Results

As a result, we reviewed more than 5000 scientific studies published in the last 10 years, selected the most significant approaches, and thoroughly surveyed the health care field related to PHRs. We developed an updated taxonomy and identified challenges, open questions, and current data types, related standards, main profiles, input strategies, goals, functions, and architectures of the PHR.

Conclusions

All of these results contribute to the achievement of a significant degree of coverage regarding the technology related to PHRs.

Related collections

Most cited references 57

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Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption.

Paul Tang, Joan S Ash, David Bates … (2005)

Recently there has been a remarkable upsurge in activity surrounding the adoption of personal health record (PHR) systems for patients and consumers. The biomedical literature does not yet adequately describe the potential capabilities and utility of PHR systems. In addition, the lack of a proven business case for widespread deployment hinders PHR adoption. In a 2005 working symposium, the American Medical Informatics Association's College of Medical Informatics discussed the issues surrounding personal health record systems and developed recommendations for PHR-promoting activities. Personal health record systems are more than just static repositories for patient data; they combine data, knowledge, and software tools, which help patients to become active participants in their own care. When PHRs are integrated with electronic health record systems, they provide greater benefits than would stand-alone systems for consumers. This paper summarizes the College Symposium discussions on PHR systems and provides definitions, system characteristics, technical architectures, benefits, barriers to adoption, and strategies for increasing adoption.

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Personal health records: a scoping review.

S. N. Archer, U Fevrier-Thomas, C Lokker … (2015)

Electronic personal health record systems (PHRs) support patient centered healthcare by making medical records and other relevant information accessible to patients, thus assisting patients in health self-management. We reviewed the literature on PHRs including design, functionality, implementation, applications, outcomes, and benefits. We found that, because primary care physicians play a key role in patient health, PHRs are likely to be linked to physician electronic medical record systems, so PHR adoption is dependent on growth in electronic medical record adoption. Many PHR systems are physician-oriented, and do not include patient-oriented functionalities. These must be provided to support self-management and disease prevention if improvements in health outcomes are to be expected. Differences in patient motivation to use PHRs exist, but an overall low adoption rate is to be expected, except for the disabled, chronically ill, or caregivers for the elderly. Finally, trials of PHR effectiveness and sustainability for patient self-management are needed.

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Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data

Jeana H Frost, Michael Massagli (2008)

Background This project investigates the ways in which patients respond to the shared use of what is often considered private information: personal health data. There is a growing demand for patient access to personal health records. The predominant model for this record is a repository of all clinically relevant health information kept securely and viewed privately by patients and their health care providers. While this type of record does seem to have beneficial effects for the patient–physician relationship, the complexity and novelty of these data coupled with the lack of research in this area means the utility of personal health information for the primary stakeholders—the patients—is not well documented or understood. Objective PatientsLikeMe is an online community built to support information exchange between patients. The site provides customized disease-specific outcome and visualization tools to help patients understand and share information about their condition. We begin this paper by describing the components and design of the online community. We then identify and analyze how users of this platform reference personal health information within patient-to-patient dialogues. Methods Patients diagnosed with amyotrophic lateral sclerosis (ALS) post data on their current treatments, symptoms, and outcomes. These data are displayed graphically within personal health profiles and are reflected in composite community-level symptom and treatment reports. Users review and discuss these data within the Forum, private messaging, and comments posted on each other’s profiles. We analyzed member communications that referenced individual-level personal health data to determine how patient peers use personal health information within patient-to-patient exchanges. Results Qualitative analysis of a sample of 123 comments (about 2% of the total) posted within the community revealed a variety of commenting and questioning behaviors by patient members. Members referenced data to locate others with particular experiences to answer specific health-related questions, to proffer personally acquired disease-management knowledge to those most likely to benefit from it, and to foster and solidify relationships based on shared concerns. Conclusions Few studies examine the use of personal health information by patients themselves. This project suggests how patients who choose to explicitly share health data within a community may benefit from the process, helping them engage in dialogues that may inform disease self-management. We recommend that future designs make each patient’s health information as clear as possible, automate matching of people with similar conditions and using similar treatments, and integrate data into online platforms for health conversations.

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Author and article information

Contributors

Cristiano André da Costa:

Programa de Pós-Graduação em Computação AplicadaUniversidade do Vale do Rio dos SinosAv Unisinos 950São Leopoldo, 93022-750Brazil55 513590816155 5135908162cac@unisinos.br

ORCID: http://orcid.org/0000-0003-3859-6199

Journal

Journal ID (nlm-ta): J Med Internet Res

Journal ID (iso-abbrev): J. Med. Internet Res

Journal ID (publisher-id): JMIR

Title: Journal of Medical Internet Research

Publisher: JMIR Publications (Toronto, Canada )

ISSN (Print): 1439-4456

ISSN (Electronic): 1438-8871

Publication date Collection: January 2017

Publication date (Electronic): 06 January 2017

Volume: 19

Issue: 1

Electronic Location Identifier: e13

Affiliations

[1] ¹Programa de Pós-Graduação em Computação Aplicada Universidade do Vale do Rio dos Sinos São LeopoldoBrazil

Author notes

Corresponding Author: Cristiano André da Costa cac@ 123456unisinos.br

Author information

Alex Roehrs http://orcid.org/0000-0003-0312-1310

Cristiano André da Costa http://orcid.org/0000-0003-3859-6199

Rodrigo da Rosa Righi http://orcid.org/0000-0001-5080-7660

Kleinner Silva Farias de Oliveira http://orcid.org/0000-0003-1891-3580

Article

Publisher ID: v19i1e13

DOI: 10.2196/jmir.5876

PMC ID: 5251169

PubMed ID: 28062391

SO-VID: dc7cd114-0299-4792-9506-0648cf77ca01

Copyright © ©Alex Roehrs, Cristiano André da Costa, Rodrigo da Rosa Righi, Kleinner Silva Farias de Oliveira. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 06.01.2017.

License:

This is an open-access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.

History

Date received : 14 April 2016

Date revision requested : 25 July 2016

Date revision received : 16 September 2016

Date accepted : 18 December 2016

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