Personal health records: a new type of electronic medical record

DOIhttps://doi.org/10.1108/RMJ-08-2016-0020
Pages286-301
Published date20 November 2017
Date20 November 2017
AuthorKisha Hortman Hawthorne,Lorraine Richards
Subject MatterInformation & knowledge management,Information management & governance
Personal health records: a new
type of electronic medical record
Kisha Hortman Hawthorne and Lorraine Richards
College of Computing and Informatics, Drexel University, Philadelphia,
Pennsylvania, USA
Abstract
Purpose This paper examines existing research on the topic of personal health records (PHRs). Areas
covered include PHR/patient portal, recordkeeping, preservation planning, access and provider needs for
future reuse of health information. Patient and physician PHR use and functionality, as well as adoption
facilitatorsand barriers, are also reviewed.
Design/methodology/approach The paper engagesin a review of relevant literature from a varietyof
subject domains, including personal information management, medical informatics, medical literature and
archivesand records management literature.
Findings The review nds that PHRs are extensions of electronic records. In addition, it nds a lack of
literature within archives and records management that may lead to a less preservation-centric examination of
the new PHR technologies that are desirable for controlling the lifecycle of these important new records-type.
Originality/value Althoughthe issues presented by PHRs are issues that can best be solved with the use
of techniques from records management, there is no current literature related to PHRs in the records
managementliterature, and that offered in the medical informaticsliterature treats the stewardshipaspects of
PHRs as insurmountable. This paper offers an introduction to the aspects of PHRs thatcould fruitfully be
examinedin archives and records management.
Keywords Data management, Digital preservation, Electronic health record,
Electronic medical record, Patient health records, Personal health records
Paper type Literature review
Introduction
Although extensive literature exists on electronic medical records (EMRs), health
information exchanges and Web-based patient portals within public health and medical
informatics journals, little has been published in the archives and records management
(ARM) journals about these personal health records (PHRs). During the early- and mid-
1990s, several authors dealt with issues related to medical records (Craig, 1990;Krizack,
1993;Ngin, 1994). In 1997, Berg and Bowker (1997) authored a sociological examination of
medical records as the sociomaterial locus of boththe body and the body politic, noting the
ways in which medical records and the body evolve together. In the 2000s, Iacovino and
colleagues wrote of recordkeeping, ethicsand legal principles (Iacovino, 2004;Iacovino and
Reed, 2008;Iacovino and Todd, 2007). Bacheet al. (2013) discussed the automatic generation
of provenance records for clinicaldata in support of reuse, while Stanberry (2011) examined
the growing use of EMRs in the USA. Also in 2013, Ackerput forth a theory of the biorecord.
In 2015, Read and colleagues examined reuse and collaboration at a medical center. Other
than this handful of examinations of medicalrecords, however, the vast majority of articles
dealing with EMRs and, morespecically, PHRs, reside exclusively within thepublic health
and medical informaticsliterature.
This literature review broadens the recordkeeping literature by examining the literature
on PHRs, as they relate to adoption and use, with the goal of understanding the nature
RMJ
27,3
286
Received1 August 2016
Accepted1 October 2016
RecordsManagement Journal
Vol.27 No. 3, 2017
pp. 286-301
© Emerald Publishing Limited
0956-5698
DOI 10.1108/RMJ-08-2016-0020
The current issue and full text archive of this journal is available on Emerald Insight at:
www.emeraldinsight.com/0956-5698.htm
of research that needs to be conducted to understand and advocate for trustworthy
management of PHRs. The literature review will focus on EMRs and PHRs offered solely
in the USA, where private EMRs and PHRs are dened and described based on existing
English-language literatures. PHRs have many similar characteristics, barriers and
facilitators of adoption and the same stakeholders as EMRs. This literature review will
succinctly outline the PHR technology concerns and questions such as secondary use,
data quality and data fragmentation. The barriers and facilitators to adoption by both
patients and physicians will then be covered. Then, specic concerns of patients and
physicians, relevant to healthcare professionals will be outlined. Finally, the roles of
record management professionals in researchingthecasetofurtherexaminethis
sparsely covered topic will be presented.
EMR vendors offer PHRs that are typically implemented by hospital or provider
organizations, used by clinicians, and accessible for free to patients. Specically, EMR
provided PHRs, referred to as tethered PHRs, are pondered as a new, distinct aspect of the
medical record for recordsmanagement and archival professionals to consider.
An EMR is a medical record which is created and maintained digitally. PHRs are an
extension of EMRs, in thatPHRs allow patients to engage proactively and collaborativelyin
their care by using an EMR system. For the purposes of this literature review, the term
electronic health record(EHR) will be used interchangeably with EMR. The American
Medical Informatics Association(AMIA) denes a PHR to be an EMR that is maintained by
the patient, typically combining information from a variety of encounters with multiple
providers (2013).Both patient and provider use PHRs.
There are multiple types of PHRs or portals available to patients and families. Types of
PHRs include tethered,untethered, Web-based or integrated. Tethered is the most populated
in the provider-based communication due to the proliferation of EMRs with the
implementation of the HITECH Act of 2009.The tethered PHR can provide patients with
preventative health care reminders, educational materials and self-management resources,
which have the potential to encouragepatient engagement and may yield improvements in
overall health. (Dontje et al., 2014,p. 824) Archer et al. dened tetheredPHRs as PHRs for
which subsets of information are provided by organizations that maintain patient data
electronically, such as physician EMRs, health plan providers, hospitals or employers.
Tethered ePHRs (e.g. patient portals) are connectedto EMRs offered by providers, hospitals
or health insurance companies (Gartrell et al., 2017, p. 226). Untethered PHRs can be
installed on isolated personal computers or internet-based portal services where only the
user enters and maintains personalhealth data (Archer et al., 2011,p.516).
PHRs provide patients real-time access to a portion of the permanent medical record,
and some organizations are even providing open notes to patients as a part of medical
record requests. As a result, the record is co-created and maintained by both providers
and patients, creating an evolving medical record that exhibits multiple provenance.
PHRs are not simply secondary sources of information in the form of reminders to the
patient by him- or herself. Although some patient portals allow patients to append
information to a copy of their medical records without the ofcial medical records being
changed, the underlying goal of PHRs is for joint care to be provided to the patient and
for joint communication between patient and provider to be appended to the ofcial
medical record. PHRs provide patients and families with secure, easy access to targeted
patient information, provide opportunities for patient-to-provider communication and
serve as a platform for safety and quality initiatives. They can offer a very rich source
of both clinical and research data.
Personal
health records
287

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