1. June 2009
Research Briefing
Special Edition: EHRs, PHRs, and Health Care Reform
page 1 Introduction
page 1 EHR Definitions
page 2 PHR Acceptability and Implications
page 3 PHR Implementation Strategies
page 4 Accuracy of Medical Records
page 5 Conclusion
Introduction
This is a special edition Ix Research Briefing While there is a general (albeit not
on electronic health records (EHRs), an unanimous) consensus that EHRs are
important infrastructure component of desirable, a limited research base is available
health care reform. to understand the effects of EHRs and
personal health records (PHRs) on clinical
A portion of the American Recovery and health care quality, patient outcomes, and
Reinvestment Act stimulus funds will be various processes within the health care
invested in EHRs. Health information delivery system.
technology (HIT) could play a significant role
in moving to an improved U.S. health care Also lacking is a comprehensive
delivery system if they are accompanied by documentation of best practices involved in
changes in the design of care delivery. implementing EHRs into a range of health
care settings.
EHR Definitions
To some extent, the terms EMR, EHR, and PHR defining* and conceptualizing the difference is
are used interchangeably, although each one is as follows:
thought to be slightly different. One way of
www.ixcenter.org 1 Ix Research Briefing Number 16, June 2009

2. *Definitions above from John Halamka's "A Healthcare IT Primer post" on The Health Care Blog.
What Exactly is a PHR? emergency room staff can retrieve vital
Meanwhile, the Markle Foundation’s information from it in a crisis. People can
Connecting for Health Initiative, in 2003, use their PHR as a communications hub: to
defined the personal health record (PHR) as send email to doctors, transfer information
follows: to specialists, receive test results and access
online self-help tools. PHR connects each of
"The Personal Health Record (PHR) is an us to the incredible potential of modern
Internet-based set of tools that allows people health care and gives us control over our
to access and coordinate their lifelong health own information."
information and make appropriate parts of it
available to those who need it. PHRs offer an What is a “Tethered PHR”?
integrated and comprehensive view of health To complicate the issue of having a specific
information, including information people agreed-upon definition of a PHR is the issue
generate themselves such as symptoms and of if –and how – a PHR is connected to an
medication use, information from doctors EHR. A tethered PHR is connected to an
such as diagnoses and test results, and EHR; an untethered PHR operates
information from their pharmacies and independently of an EHR. The term PAEHR
insurance companies. Individuals access (patient accessible electronic health record)
their PHRs via the Internet, using state-of- is sometimes used to indicate a tethered
the-art security and privacy controls, at any PHR. The term PCHR (patient-controlled
time and from any location. Family health record) has been used to indicate an
members, doctors or school nurses can see untethered PHR.
portions of a PHR when necessary and
PHR Acceptability and Implications
Objectives Background
To learn more about consumer beliefs and Health information systems are needed not
behaviors regarding untethered PHR use and only to support public health monitoring and
the corresponding policy (and design) research, but also un-fragmented health
implications for successfully implementing records and engaged and empowered
PCHRs (patient-controlled health records). patients. Personally controlled health
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3. records are a special class of PHRs IxImplications
“distinguished by the extent to which users It is noteworthy that consumers expect
control record access and contents.” tailored communications based on the data
Examples include Google Health, Microsoft’s in their PCHRs, as well as linkages between
HealthVault and Dossia. their self-reported data and clinical data.
Patients may have unrealistic expectations of
Qualitative research was conducted as part the ability of existing systems to provide
of a formative evaluation of the Dossia PCHR them with tailored communications. PCHR
demonstration in the northeastern U.S. systems need to be expanded and
Data were collected using focus groups, semi implemented in a way that facilitates
-structured interviews, and analysis of email accurate Ix prescriptions.
content over a two-year period (2006-2008).
Predictive modeling, combined with health
Findings information, demographic data, and patient
Study results indicate low levels of familiarity preferences can be used to create Ix
with PCHRs. Interestingly, results also information triggers. That will help create
indicated high expectations for the links for consumers between their PCHRs
capabilities of PCHRs. For example, and tailored educational content to help
participants had high expectations for them m ake better health decisions and
systems to provide them with tailored manage health behaviors effectively.
communications. Participants also expected
linkages between self-reported data and There is also an opportunity to educate
clinical data. clinicians about the role patients may
potentially play in increasing the quality of
Overall, participants seemed to overestimate their medical information, if given the
the extent to which their personal health opportunity. Accurate information not only
information is available and transferred enables more accurate tailoring of
electronically within IT systems. A common information, but presumably would increase
perception among participants was feeling the accuracy of provider-facing decision
personally excluded from health information support tools and/or quality of care.
systems. The desire to be included and have
some degree of control over their health Citation
information was a motivator for consumers Weitzman ER, Kaci L, Mandl KD.
to adopt and use the PCHR. Acceptability of a Personally Controlled
Health Record in a Community-Based
Consumer’s biggest privacy concerns related Setting: Implications for Policy and Design .
to insurability, denial of employment, and/or J Med Internet Res 2009;11(2):e14. http://
denial of care. The use of an audit check www.jmir.org/2009/2/e14/
appeared to be the most reassuring and
accessible way to safeguard privacy and
build confidence.
PHR Implementation Strategies
Objectives Background
To explore issues related to providing patient Expanding EHRs to include consumer access
access to the PAEHR (tethered PHR) and has the potential to improve patient
managing the necessary corresponding experience, support patients with chronic
institutional change. conditions, improve transparency, increase
referral rates, and enable continuity of care for
www.ixcenter.org 3 Ix Research Briefing Number 16, June 2009

4. patients. However, potential barriers to the IxImplications
adoption of PHRs for both clinicians and Focusing on areas of agreement points to the
patients include privacy and security, change importance of flexibility and interoperability
management, a lack of EHR infrastructure, and of EHR systems. Flexibility within systems
conversion of clinical data into useful will allow patients to indicate and receive
information for average consumers. communications according to their
individual preferences or health literacy
Meanwhile, there are few standards and status. This would also address one of the
guidelines available to address barriers to the
areas of disagreement about the timing with
use and clinical adoption of PHRs. To this end,
which patients should receive information.
the Canadian Committee for Patient Accessible
Patients could decide for themselves whether
Electronic Health Records (CCPAEHR)
they would like real-time test results, for
assembled a group of key stakeholders and
example, or if they would prefer to schedule
experts in the field of EHRs and PHRs to
an appointment with their doctor to receive
explore issues related to providing patient
and review the results.
access to the EHR and managing the
necessary corresponding institutional
Interoperability of EHR systems also has
change.
major Ix implications. In addition to
supporting continuity of care across settings,
Findings
information coordinated across/between
There were several areas of consensus
systems, including patient-generated
among the expert panel. First, the panel
information, would likely generate more
agreed that patient access to personal health
powerfully accurate Ix triggers. Increased
information is fundamental to patient
interoperability should result in more
engagement and empowerment. Second,
comprehensive patient data and likewise,
patients should be able to add information to
more specifically tailored information to help
their EHR. Finally, they agreed on the
patients make beneficial health decisions.
importance of providing tailored educational
materials to patients to meet their
It is important to note that there was a lack
information needs.
of actual patient representation on this
panel.
There were several areas where there was not
common agreement among panelists, the
Citation
first of which involves a commonly
Wiljer D, Urowitz S, Apatu E, DeLenardo C,
understood definition of EHRs. The second
Eysenbach G, Harth T, Pai H, Leonard KJ,
divergence of opinion involved how much of
Canadian Committee for Patient Accessible
the data patients should be able to access.
Health Records (CCPAEHR). Patient
The third area lacking consensus related to
Accessible Electronic Health Records:
the timing of data; some believed patients
Exploring Recommendations for Successful
should have real-time access to data while
Implementation Strategies. J Med Internet
others believed that real-time access might
Res 2008;10(4):e34. http://
cause unnecessary stress to patients who are
www.jmir.org/2008/4/e34
unable to interpret the information on their
own.
Accuracy of Medical Records
Objectives documentation of these symptoms by
To determine agreement between patient- physicians in an electronic medical record
reported symptoms of heart disease and the (EMR).
www.ixcenter.org 4 Ix Research Briefing Number 16, June 2009

5. Background mandate requiring all health care providers
Early identification of patients at risk for in the U.S. to begin using EMRs. Given that
heart disease is critical to its prevention and the purpose of EMRs is primarily to facilitate
successful treatment. Natural language and streamline care delivery (and secondarily
processing (NLP) was used to identify used for clinical research and quality and
symptoms of heart disease (chest pain, safety assurance) data accuracy issues must
dyspnea, and cough) recorded in the text of be addressed. The clinical quality issues
health care provider clinical notes. Reported associated with the lack of proper EMR
symptoms from 1119 adult patients were documentation have yet to be investigated.
compared to the symptoms reported in their
clinical notes. The study was conducted at Since well-tailored prescription of
the Mayo Clinic, which utilizes a state-of-the- information (Ix) is heavily contingent upon
art EMR environment. the data available in EMRs, the processes by
which information is collected in the EMR
Findings needs to be better understood. Incomplete
Significant discrepancies were found between or inaccurate data in EMRs limits the ability
patient-reported symptoms and symptoms of existing EMR systems to trigger effective
recorded in their EMRs, with 31% of patients information therapy. NLP offers potential for
with chest pain, 38% with dyspnea, and 45% mining qualitative patient data for
with cough not having these symptoms information triggers, but only to the extent
recorded in the clinical notes of their EMR. that symptoms have been recorded within
Although the reasons for these discrepancies the EMR.
have yet to be researched and understood,
data accuracy within an EMR cannot be Citation
assumed, at least when it comes to patient- Pakhomov, Serguei V., et al. 2008.
reported symptoms of heart disease. Agreement Between Patient-reported
Symptoms and Their Documentation in the
IxImplications Medical Record. American Journal of
While there are some limits to how the Managed Care, 14(8):530-539.
findings of this study can be generalized to
all health care settings, it has special
significance given the current federal
Conclusion
Data Quality participation will minimize errors that
In this preliminary review of recent already exist within EMRs.
literature, there appears to be a lack of
understanding of issues around data quality Best Practices
on EHR/PHRs. Although this was by no Another area where Ix may be able to play a
means a comprehensive review, it is role in health care reform is by sharing
interesting to note that while one article information therapy best practices. Ix best
focused specifically on the issue of data practices may have direct relevance to
accuracy, data accuracy issues emerged in guiding the implementation of HIT and EHR
the other two articles under sections on systems in a way that will benefit patients.
privacy and confidentiality.
For example, Group Health Cooperative uses
Both patient and provider education is secure email and after visit summaries (AVS)
required to address data quality issues. to enhance communication between patients
While providers may fear that allowing and physicians. Their investment in HIT has
patients access to EMR data might increase been offset by benefits to both patients and
errors, it is equally plausible that patient physicians. Patients use secure email when
www.ixcenter.org 5 Ix Research Briefing Number 16, June 2009

6. they otherwise would have called or a transparent communication tool to help
scheduled appointments to ask questions. patients understand their health
Also, patients leave their visits with a information, feel included in the health care
document, printed out from the EHR, process, and build trust with their health
summarizing their most relevant health care providers.
information and follow-up instructions (the
AVS). Providers receive fewer follow-up Putting the Focus Back on the Patient
phone calls since forgotten information is One of the acknowledged limitations in one
likely recorded on the AVS and other simple of the reviewed articles is that the group of
questions can be answered via email. “experts” admittedly included minimal
patient perspectives. The patient is at the
The Institute for Family Health, whose center of information therapy. The patient is
mission is to provide health care to the also at the center of health outcomes. The
medically underserved, saw the AVS as an success of health care reform will, at least in
opportunity to establish trust, which was the some part, be based on health outcomes. Ix
biggest barrier to effectively providing health provides a framework for focusing on patient
care to this population. The AVS is used as outcomes.
Ix is a registered trademark of the Center for Information Therapy, Inc. See www.ixcenter.org.
www.ixcenter.org 6 Ix Research Briefing Number 16, June 2009