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Engaging the Public in HIE 3-2011

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					Engaging the Public in Health Information Technology and Health Information Exchange

Marc Kolman, MSPH, is a consultant based in Carrboro, NC and a member of the NC Consumer Advisory
Council on Health Information. He can be reached at marckolman@gmail.com.

The HITECH Act provides incentives for the adoption of Electronic Health Records (EHR) and addresses
privacy and security concerns associated with the electronic transmission of health information. PHIN is
designed to enable the consistent exchange of health data for public health purposes within the five
functional areas of detection and monitoring, data analysis, knowledge management, alerting, and
response. Engaging both consumers, or the public, and providers of health care is crucial to effective
adoption and use of Health Information Technology (HIT) and Health Information Exchanges (HIE) for
our Country’s future health care system. From a public health standpoint, this is needed for the
screening and treatment of acute and chronic conditions, as well as the detection and reporting of
disease outbreaks and public health threats. These advances in healthcare technology support
surveillance, data analysis, and enhanced clinical and public health metrics as they engage health care
consumers through interconnected information systems throughout public health at the local, state, and
national levels.


Why Engaging the Public is Critical to PHIN

Lack of participation on the part of both consumers and providers of health care could result from fear,
mistrust, and a low level of understanding of HIT and HIE. From a public health standpoint, participation
and engagement with the health care system is crucial for screening and treatment of acute and chronic
conditions, and detection and reporting of diseases, outbreaks, and other public health incidents.
Participation and engagement also supports surveillance, data analysis, and enhanced clinical and public
health metrics. As these are critical to PHIN objectives, it is crucial that efforts are taken to engage
health care consumers and providers to participate in HIT and HIE. Interconnected information systems
throughout public health at the local, state, and national levels that protect patient privacy and security
through appropriate safeguards will support the objective of improving health care delivery. Another
key part of improving the health care system is to provide adequate education of this new system to
both the health care consumer and provider.

The 5 Functional Areas of PHIN
    1. Detection and Monitoring
    2. Data Analysis
    3. Knowledge Management
    4. Alerting
    5. Response

Markle Foundation
One of the key underlying pieces of work for engagement with HIE is the Markle Foundation’s Common
Framework which is designed to protect consumers and guide the organizations that collect, share, and
store health information. Markle’s Common Framework encourages appropriate handling of personal
health information by defining nine principles as follows. See http://www.markle.org/health/markle-
common-framework.
     Openness and Transparency
     Purpose
       Collection, Limitation and Data Minimization
       Use Limitation
       Individual Participation and Control
       Data Quality and Integrity
       Security Safeguards and Controls
       Accountability and Oversight, and
       Remedies

The Markle Foundation also released a report on 1/31/2011 – The Markle Survey of Health in a
Networked Life. This national survey compares the core values of physicians and the general public on
use of information technology in health care. "Doctors and patients agree on the importance of putting
accurate information in their hands to improve the quality, safety, and efficiency of health care.” This
survey shows that both the public and physicians want investments in HIT but that it comes with
sufficient accountability. According to the survey, roughly 80 percent majorities of both the public and
doctors agreed that it's important to require participating hospitals and doctors to share information to
better coordinate care, cut unnecessary costs, and reduce medical errors. Four in five doctors and
patients expressed the importance of privacy protections for online medical records.

Consumer Partnership for E-Health (CpEH)
The Consumer Partnership for e-Health (CPeH) is a non-partisan coalition led by the National
Partnership for Women and Families that has been working since 2005 to ensure that efforts to drive
HIT adoption meet the needs of patients and their families. CPeH includes members from nearly 50
consumer, patient, and labor organizations working on both the national and local levels, and is a
coalition made up solely of consumers and patient advocates. The combined membership of CPeH
represents more than 127 million Americans. CPeH has been instrumental in helping shape recent
federal legislation related to HIT and advocates for a patient-centered focus. CPeH drafted a Consumer
Vision for what patient-centered care that uses HIT would look like and also a set of Consumer Principles
that are based on the Markle Foundation’s Common Framework.

More recently, the CPeH has drafted a Consumer Platform for eHealth (1st draft 1/2011) that outlines a
vision for how HIT can positively impact people’s lives, as well as ways consumer groups are intending to
work with other stakeholders to improve health outcomes. This Consumer Platform views consumers –
the public - as the most significant untapped resource in health care because they are: agents of
change, participants in decision making about their health, sources of information about themselves and
their care, and decision-makers about how to best integrate health into their own lives. The Platform
further states that the ability of HIT to improve health outcomes is “dependant on the degree to which
consumers are engaged in efforts to implement and use these technologies.” The CPeH’s Platform gives
a framework of principles for engaging consumers that can – and should – be used to develop policies
around HIE. See http://www.nationalpartnership.org/site/PageServer?pagename=issues_health_IT.

The Coalition for Patient Privacy
The Coalition for Patient Privacy developed a set of privacy principles to serve as standards for HIE
legislation. Their principles are accountability, control, and transparency. In a letter to the ONC on
Meaningful Use Stage 2 requirements, Patient Privacy Director Deborah Peel, MD, says not only does
the majority of the public agree that data privacy protections must be engineered into HIT systems up
front, but the President’s key scientific advisors also agree. This letter further states the HIT Policy
Committee’s Privacy and Security Tiger Team has failed to make any recommendations about privacy
and security for MU Stage 2. The public expects consent and control over disclosures of health
information for all routine uses and for research. Lack of respect for patients’ interests and concerns
could result in perceived violation and mistrust of medical providers – whether public or private – which
may result in tendency to avoid treatment and care. This could reduce standard medical treatment,
preventive health practices such as screening and diagnosis, as well as screening and treatment for
communicable and sexually transmitted diseases. This letter concludes that, “the public cares very
deeply about privacy, and failure to protect privacy will impair adoption of HIT systems and data
exchanges. Survey after survey shows the vast majority of the public wants to control the use and
dissemination of their health information. More importantly, people act like they care; extensive
evidence demonstrates that patients will put their health at risk to ensure that sensitive health
information is private.” See http://patientprivacyrights.org/wp-content/uploads/2011/03/PPR-MU-
Stage-2-Comments.pdf.

Office of the National Coordinator (ONC)
There are some very important actions related to consumer engagement at the federal level through the
ONC. A recent announcement indicates that the ONC has recently made an appointment to a position in
support of consumer outreach efforts. The ONC is also, with considerable input, developing a Strategy
for Empowering Consumers with an initial draft published in November, 2010 with the goal of
empowering consumers with HIT to improve their health and the health care system. Objectives include
engaging consumers with HIT, accelerating both providers’ and consumers’ access to electronic health
information, encouraging innovation in the capture and usefulness of electronic health information, and
integrating health information with clinical applications to support consumer-centered care. From the
federal perspective, there is consideration in using the right platform, or mechanism, to obtain public
input on HIT and HIE that may include town hall meetings, blogs, and other social media. See
http://healthit.hhs.gov/blog/onc/index.php/2010/11/19/strategy-for-empowering-consumers-round-
two-%E2%80%93-continuing-the-discussion/.

The President’s Council of Advisors on Science and Technology (PCAST)
PCAST recently published a report called Realizing the Full Potential of Health Information Technology to
Improve Healthcare for Americans: The Path Forward, that examines how HIT could improve the quality
of healthcare and reduce its cost, and whether existing federal efforts in HIT are optimized for these
goals. This report conclusions are that: HIT can help catalyze a number of important benefits including
improved access to patient data which can help clinicians as they diagnose and treat patients and can
help patients as they strive to take more control over their health; HIT can help streamline monitoring of
public health patterns and trends; and HIT gives an enhanced ability to conduct clinical trials of new
clinical/diagnostic methods and treatments; and HIT also stimulates the creation of new high-technology
markets and jobs. The significant thing to this discussion is that this report acknowledges the benefits of
engaging consumers in HIT to improve the benefits of HIT and HIE at improving patient health. See
http://www.whitehouse.gov/administration/eop/ostp/pcast.

Conclusion
A recent Health Affairs article found that 92 percent of recent literature reached overall positive
conclusions on HIT. Furthermore, the study states that, “the ‘human element’ is critical to HIT
implementation…. (which) highlights the importance of strong leadership and staff ‘buy-in’ if systems
are to successfully manage and see benefit from HIT.” Not only is ‘buy-in’ needed from the health care
provider, but from the public consumers of health care as well. Effective strategies to engage the public
in a care environment that is increasingly benefitting from HIT requires strong leadership. Participation
and engagement of the public is needed to ensure that HIT and HIE implementation improves the health
of individuals and communities and realizes the intended benefits of improving quality and reducing
costs. PHIN, as a fully capable and interoperable public health information system, is critical to support
these intended benefits.

				
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posted:10/11/2011
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