Patients Charting the Course Citizen Engagement and the Learning Health System: Workshop Summary (2011) / Chapter Skim
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3 Clinical Data as a Public Good for Discovery
3 Clinical Data as a Public Good for Discovery
Pages 69-94
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From page 69... ...
The papers in this chapter explore the potential of clinical data to improve research and health care, strategies to enhance access to health data and information, and key challenges to ensure data integrity (e.g., privacy, security, and proprietary concerns)
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From page 70... ...
highlights the significant amount of data currently held by the various agencies of HHS and how these data could improve the value, science base, and patient experience of health care. He describes HHS's efforts to open access to high-value data sets and to encourage public participation in the use of these data for socially beneficial purposes.
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From page 71... ...
The HIT infrastructure of the future should not just be the eyes and ears but also be the action arm of population health. Key Considerations for Developing a National Unified HIT Infrastructure A number of projects now under way focus on developing HIT infrastructure for many different functions, including clinical effectiveness research, drug discovery, quality measurement, and public health surveillance.
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From page 72... ...
This example clearly illustrates that despite the broad data needs of a learning health system, the nation should start with something simple -- perhaps the humble clinical care summary. Additional work could expand
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From page 73... ...
Perhaps patients should also benefit financially from the use of their health information. Choosing the Best Approach for Critical Infrastructure ONC continues to identify the key principles that should underlie the creation of a national HIT infrastructure and develop supporting policies and incentives.
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From page 74... ...
The vast stores of data captured by HHS agencies, for example, are an important national resource for enhancing the value, science base, and patient experience of health care. The creation within HHS of the position of Chief Technology Officer -- whose mission is to leverage the power of data, technology, and innovation to improve health -- and the development of an HHS Open Government Plan signal HHS's commitment to the principles of open government and to playing a catalytic role in the development of a learning health system.
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From page 75... ...
Key opportunities outlined by the directive include publishing government information online, improving the quality of government information, creating and institutionalizing a culture of open government, and establishing an enabling policy framework for open government. In response to the OMB directive, HHS developed an Open Government Plan, which outlines immediate opportunities to improve access to data and to provide a means for their use in accomplishing HHS's mission 1 See http://www.whitehouse.gov/the_press_office/TransparencyandOpenGovernment/ (accessed October 11, 2010)
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From page 76... ...
Dashboard; the Food and Drug Administration (FDA) Transparency Initiative; FDA Transparency, Results, Accountability, Credibility, and Knowledge-Sharing; Freedom of Information Act Excellence; and the Community Health Data Initiative.
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From page 77... ...
This interface and tool is debuting at http://data.medicare.gov with the launch of the Open Govern ment Plan -- Online publication of detailed Medicaid State Plan documents and amend ments on the CMS website by 2011 -- The release of new national, state, regional, and potentially county-level data on Medicare prevalence of disease, quality, costs, and service utiliza tion, never previously published, as part of HHS's Community Health Data Initiative by the end of 2010 • Food and Drug Administration (FDA) Transparency Initiative is being A formulated with extensive public input, and focused on (1)
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From page 78... ...
This approach is best illustrated by the Community Health Data Initiative, which seeks to help Americans better understand and take action to improve healthcare performance in their communities. The initiative's initial short-term goal is to build a network of data suppliers and users.
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From page 79... ...
Such applications and programs could include interactive health maps, compe titions, social networking games that educate people about community health, enhanced web search results for health searches, etc. By leveraging the power of transparency, participation, and collaboration, the Community Health Data Initiative seeks to significantly improve the health of our communities.
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From page 80... ...
They range from interactive health maps, to means of improving public understanding of national health issues, to community health dashboards that can aid city or county officials in identifying key regional health issues and communicating about these issues with the public. One application, for example, based on a real estate website that displays school system performance metrics as part of a property's description, would also include health performance data in home listings.
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From page 81... ...
Unfortunately, 41% of people state that health information found online had no impact on their decisions. Using com munity health data, Bing has created new features that allow easier selection of hospitals based on patient quality of care ratings and new ways to assess potential areas to live based on a combination of community health measures and access to goods and services.
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From page 82... ...
A mash-up of community health indicators, the Gallup-Healthways Well-Being Index and the Healthways Well-Being Assessment, Community Clash lets you pick community indicators you believe give you an edge in the head-to-head game play. Play endless hands, ex ploring different metrics and locations each time, and share key victories with your social network.
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From page 83... ...
Once in the app, select the Treks Tab and search for PRESIDENTIAL. Community Health Map -- HHS keeps track of a variety of healthcare indicators across the country, resulting in a large geospatially multivariate data set.
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From page 84... ...
A group of programmers at the Great American Hackathon used Pillbox's data to begin development of a Facebook game, writing hundreds of lines of open source code in the process. This fall, as part of the Community Health Data Initiative, the Pillbox team will repeat this process with other government health data sets.
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From page 85... ...
It allows users to create and display maps of community health and health resource data. It also allows secure access to data for limited sharing and for secure uploading for display in combination with the other public data.
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From page 86... ...
Concluding Thoughts The spirit of commonwealth and of "all hands on deck" emerging from efforts to foster open government is essential to a data ecosystem and to a learning health system. Initial results of HHS's Open Government Plan also illustrate the important catalytic role government can play in health system and health improvement.
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From page 87... ...
ENSURING DATA INTEGRITY: ADDRESSING PRIVACY PROTECTION AND PROPRIETARY CONCERNS Don E Detmer, M.D., M.A.
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From page 88... ...
active engagement of patients in their care to improve their understanding of and commitment to treatments of known effectiveness; and (4) ongoing, credible systems that preserve privacy and manage patient information securely to achieve data integrity for both healthcare operations and research of all types (e.g., biomedical, public health, and health services research)
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From page 89... ...
Further, citizens should explicitly be given the opportunity to opt out of the accessibility of any personal genetic information for research that meets HIPAA requirements and has been approved by an IRB to use nonanonymized health record data for legitimate research purposes. Any breaches of data security relating to research use would fall within BOX 3-3 Components for a "Health Research and Safe Care Act of 2011" Citizens have the opportunity to • pt out of selection of a unique personal health identifier for use in research o databases (including an option for the identifier to be used for routine personal health care)
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From page 90... ...
EHRs have the potential to reduce the quality of clinical notes as well as improve care through better data access, and it is wise not to overlook the role that support for professionalism can play in a contractual regulatory world. At the broader policy level, instead of supporting research, current policy focuses overwhelmingly on privacy protection of personal health information, and such federally enforced protections continue to mount with neither the ability nor support by citizens to alter this policy course.
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From page 91... ...
Personal Demographics Service, Death Registration, Birth Notification Dataset, Commissioning Data Set/Hospital Episode Statistics, Cancer Register, NHS CRS Electronic Prescribing Service and National Prescribing Service, General Practice Research Database, Health Improvement Network, EMIS Primary Care (QResearch) , IMS-Mediplus, General Practice Extraction Service, Cardiac Register; National Diabetes Audit, National Congenital Anomaly System, UK Renal Registry, Townsend Material Deprivation Score, Jarman Underprivileged Area Score, Office for National Statistics Demographic indexes, National Statistics Postcode Directory, NHS HealthSpace, and Mental Health Minimum Data Set.
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From page 92... ...
These data seem to be a useful validation of the estimated size of an often vocal minority who figure so prominently in all of the public debates about research, uses of clinical data and electronic data systems.
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From page 93... ...
Journal of the American Medical Informatics Association 17:115-123. Blue Ridge Academic Health Group.
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From page 94... ...
2007. The learning healthcare system: Workshop summary.
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