The Role of the Personal Health Record in the EHR
information technology will be integral to the US transformation to a
safer, more efficient, consumer-driven healthcare system, and the personal
health record (PHR) will be a valuable asset to individuals and families,
enabling them to integrate and manage their healthcare information through
secure, standardized tools. It is imperative that patients, healthcare
providers, and payers work together to develop a PHR model. Establishing
a common data set is a vital starting point.
In September 2002 the Markle Foundation established Connecting
for Health, a public-private collaborative whose purpose is to “bring
greater visibility and coordination to the many government, provider
and industry efforts to speed up the adoption of electronically connected
health information systems.”1 Phase 1 of the project included a
recommendation to engage the American public in this endeavor, with a
more specific objective of developing personal health records.2
2 of the collaborative project included the formation of the working
group on policies for electronic information sharing between doctors
and patients. The working group reported several findings, including:
development should be accelerated.
- PHRs will help increase consumer
health awareness, activation, and safety.
- There is no single pathway
to a universal PHR.
- A common data set is a vital starting point.3
In 1996 AHIMA’s Board of Directors charted the
future course of the association and health information practice. As
part of the Vision 2006 project, several task forces were established
to clarify future roles and skills.4 One identified role was the patient
information coordinator, a precursor to the role HIM may assume with
the PHR. The duties of this role include:
- Ensuring the timely transfer
of patient information among healthcare providers
- Showing patients how
to manage their personal health histories
- Showing patients how to access
computer-based information resources
Clearly, the time has come for
HIM to take up this role and help lead the PHR effort.
In October 2003 AHIMA launched myPHR (www.myPHR.com), a guide to understanding
and managing personal health information for the general public. The
site defines a health record, provides instructions on accessing health
information and compiling and keeping a personal health record, and
explains privacy rights. The site has tapped into public interest in
PHRs, with 5,500 visitors in an average month and reaching as high
as 9,000 visits in other months.
In March 2005 AHIMA produced a public education presentation
kit titled “Your
Personal Health Information: How to Access, Manage, and Protect
kit provides HIM leaders with complete materials for an hour-long
presentation to the general public. It includes a video, a PowerPoint
presentation, a handout, and fliers for advertising the event.
E-HIM PHR Work Group Charter
AHIMA recently convened an e-HIMTM work
group to focus on the PHR. The group studied emerging activity occurring
around the PHR. From this research, the work group formulated a definition
of the PHR, including its attributes. The work group also recommended
the minimum common data elements to be included in a PHR, emerging HIM
roles, and consumer education and tools to promote the PHR. Finally,
the work group performed an environmental scan of the current industry
activity within the United States, including the various products currently
available to consumers. Descriptions of this work follow.
Definition of the PHR
The personal health record (PHR) is an electronic,
universally available, lifelong resource of health information needed
by individuals to make health decisions. Individuals own and manage the
information in the PHR, which comes from healthcare providers and the
individual. The PHR is maintained in a secure and private environment,
with the individual determining rights of access. The PHR is separate
from and does not replace the legal record of any provider.
of the PHR
The work group organized PHR attributes into six categories:
ownership; function; format and content; privacy, access, and control;
maintenance and security; and interoperability. A complete description of
attributes is available in appendix A.
The future PHR is an electronic application, as noted in
the preceding definition. However, at this point in time most individuals
maintain their PHRs in one of the following formats.
are the files that most of us have around our homes in folders filled
with information from our doctors, insurance companies, pharmacies, and
hospitals. Some have created PHR forms and have developed lists of emergency
contacts, drug sensitivities, doctors, immunizations, and medications
either in written form or on personal computers.
also store health information on personal computers, typing or scanning
information into generic software or specific applications such as
Personal Health Record (www.capmed.com)
and Health-Minder Health Information Manager (www.health-minder.com).
Desktop-based solutions in general lack the ability to easily exchange
information between consumers and healthcare providers (e.g., they do
not provide direct Internet access). Healthcare providers do not have
direct access to the information contained in the desktop PHR nor the
ability to update that information.
services allow consumers to maintain their information in private online
accounts, which they access by logging in with a unique user name and
password. Web-based platforms do not require software other than a Web
browser. They may include secure e-mail, document sharing, and video-conferencing
for home consultations.
In most cases, Web-based solutions provide around-the-clock
access to a person’s medical information from any Internet-connected
device. For that reason these solutions serve as excellent information
sources in an emergency. Consumers or their caregivers have the option
to fax information directly into the PHR repository. Examples of this
type of PHR are My Personal MD (www.personalmd.com)
and HealthTracer (www.healthtracer.com).
A more comprehensive list is described in appendix E: “Personal
Health Record Products in the Marketplace,”.
Hybrid desktop/Web-based. The typical hybrid solution
allows individuals to maintain their PHRs on their personal computers
and provides an upload facility to a secure Web server. The Web server
provides around-the-clock access to the information. The access is primarily
read-only, with the update capability restricted to the individual’s
personal computer. In most cases individuals are allowed to upload all
or part of their medical information as they desire. An example of this
type of PHR is “SynChart” (www.synchart.com).
Portable devices. “The
capabilities of portable devices are expanding rapidly and may lead to
a whole new generation of PHR applications,” notes
Connecting for Health.5 Consumers currently have the ability to
store their health information on smart cards, personal digital assistants,
mobile phones, and memory devices that plug into personal computers.
most cases, portable devices are used as an add-on feature to a desktop-,
Web-, or hybrid-based PHR application. For example, CapMed offers a proprietary “Personal
HealthKey” device that fits on a keychain. Information is
downloaded to the device, which when connected to a PC’s
universal serial bus port automatically launches a program contained
in the device and displays the individual’s medical information.
Common Data Elements
A standardized PHR must include common data
elements in order to ensure its interoperability among different care
settings and different providers. Suggested categories of common data
- Personal demographic information
- General medical information
- Allergies and drug sensitivities
- Clinical tests
- Pregnancy history
“Common Data Elements in a PHR,” appendix B, lists the complete, patient-supplied
minimum common data set developed by the work group.
Emerging PHR Roles
The work group also projected the direction of the
HIM profession with the PHR. See Appendix C: “Emerging
HIM Roles and Responsibilities with the PHR,”.
The group outlined an approach for professionals
to follow when designing PHR educational presentations.
The educational presentations must be customized based
- The target group or audience (physicians, consumers, providers,
- The most important needs or
barriers for each target group or audience
- The most effective way to
reach each target group or audience
Preparing the approach is necessary to capture the specific issues within
each community of interest—physicians will have concerns that are
separate from community support groups such as diabetes or Alzheimer’s
groups, for example. Presentation examples can be found in appendix D, “Models for Community Education.”
The work group completed an environmental scan of
PHR products on the market. Though current as of the publication date,
the list will likely be obsolete within a short period of time as new
products are developed. The myPHR Web site (www.myPHR.com) maintains
a current listing of not-for-profit products.
The work group’s list
presents products alphabetically first by individual use (i.e., products
available to individuals for their own use), then by those available
to individuals as part of a corporate or enterprise system. The list
also indicates whether the product is free or for puchase and whether
it is Internet-based or for use on a personal computer or device. The
list, “Personal Health Record Products
in the Marketplace,” appears as appendix E in the online version.
the US moves toward a more consumer-driven healthcare system, the advantages
of the patient-controlled health record become more central to the
goals of reducing the costs of healthcare and providing a safer system.
It is imperative that patients, healthcare providers, and payers work
together to develop a model for personal health records that will serve
to achieve these goals.
- Connecting for Health. “Connecting Americans to their Healthcare:
Final Report” (2004): 13. Available online at www.connectingforhealth.org/resources/wg_eis_final_report_07 04.pdf.
for Health. “Achieving Electronic Connectivity in
Healthcare: A Preliminary Roadmap from the Nation’s Public and
Private-Sector Healthcare Leaders” (2004). Available online at
for Health. “Connecting Americans to their Healthcare.”
- AHIMA. “Evolving
HIM Careers: Seven Roles for the Future.” 1999.
p. v. Available online in the FORE Library: HIM Body of Knowledge at
- Connecting for Health. “Connecting Americans to
AHIMA e-HIM Personal Health Record Work Group. "The Role of the Personal Health Record in the EHR." Journal of AHIMA 76, no.7 (July-August 2005): 64A-D.