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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 firstname.lastname@example.org. 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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