7th Annual AMIA Invitational Health Policy Meeting December 12-13 ...

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Agency or Organization Office of the National Coordinator for Health Information Technology (ONC) President’s Council of Advisors on Science and Technology (PCAST) Patient-Centered Outcomes Research Institute (PCORI) Social Security Administration (SSA) Veterans Health Affairs (VHA) (see also DoD) AMIA Invitational Health Policy Meeting 2012 Page 48 12/10/2012 Data Use Programs and Policies (selected) � Health IT Policy Committee made recommendations on secondary use privacy issues (10/18/2011). Discusses what secondary uses of data constitute “research” and what is needed to build and maintain trust in secondary data uses. See http://healthit.hhs.gov/portal/server.pt/community/healthit_hhs_gov__policy_recommendations/1815 � Created the Investing in Innovation (i2) program (2011) to host competitions to develop tools or programs that support HIT innovation including a focus on secure sharing of health information. See http://www.hhs.gov/news/press/2011pres/06/20110608a.html � Funded the Strategic Health IT Advanced Research Projects (SHARP) to confront challenges to adoption of EHRs and other forms of health IT. Grants focus on secondary use of EHR information, security and health IT, patient-centered decision-making support, and health care application and network design. See http://www.healthit.gov/policy-researchers-implementers/strategic-health-itadvanced-research-projects-sharp � Funds the Beacon Community Cooperative Agreement Program that provides funding to 17 selected communities throughout the U.S. that have made inroads in the development of secure, private, and accurate systems of EHR adoption and health information exchange. See http://www.healthit.gov/sites/default/files/pdf/fact-sheets/beacon-communities-lessons-learned.pdf � Issued 2008 report, Nationwide Privacy and Security Framework For Electronic Exchange of Individually Identifiable Health Information, which discussed a framework for data security and privacy principles and policies. See http://healthit.hhs.gov/portal/server.pt/gateway/PTARGS_0_10731_848088_0_0_18/NationwidePS_Framework-5.pdf � 2010 Report by the President's Council of Advisors on Science and Technology: Realizing the Full Potential of Health Information Technology to Improve Healthcare for Americans: The Path Forward. Report discusses improved access to patient data including privacy and security considerations. See http://www.whitehouse.gov/sites/default/files/microsites/ostp/pcast-health-it-report.pdf � The Patient-Centered Outcomes Research Institute (PCORI) is authorized by Congress to conduct research to provide information about the best available evidence to help patients and their health care providers make more informed decisions. PCORI’s research is intended to give patients a better understanding of the prevention, treatment and care options available, and the science that supports those options. PCORI is developing research methods that support the engagement and meaningful inclusion of patients at every step of the research process. See http://www.pcori.org/ � In 2011, the Social Security Administration limited access to state records that are part of the Social Security Death Master File. Without an easily accessed, updated national death index, it will be harder for researchers to obtain mortality data. See http://www.nytimes.com/2012/10/09/us/social-security-death-record-limits-hinder-researchers.html?_r=0&pagewanted=print � My HealtheVet is the VA's Personal Health Record. It was designed for veterans, active duty Service members, their dependents and caregivers. My HealtheVet helps individuals partner with their health care team. https://www.myhealth.va.gov/index.html � The VA's Office of the Inspector General released a report noting that the electronic data-exchange network between the Department of Veterans Affairs medical centers and their research partners is ineffectively managed and leaves potentially sensitive data vulnerable to security breaches. http://www.va.gov/oig/pubs/VAOIG-11-01823-294.pdf
AMIA Invitational Health Policy Meeting 2012 Page 49 12/10/2012 This Page is Blank
Page 1 and 2: 7th Annual AMIA Invitational Health
Page 3 and 4: AMIA Wishes to Thank the Following
Page 5 and 6: AMIA Invitational Health Policy Mee
Page 7 and 8: 10:15 - 10:30 AM Break and Particip
Page 9 and 10: generated across the health lifespa
Page 11 and 12: Meeting Activities � Review and d
Page 13 and 14: management and security of that inf
Page 15 and 16: 5. Safeguarding health data from in
Page 17 and 18: Health Data Use, Stewardship, and G
Page 19 and 20: Health Data Use, Stewardship, and G
Page 21 and 22: clinical databases are necessary to
Page 23 and 24: Laboratory at the Wisconsin Institu
Page 25 and 26: Peter J. Embi, MD, MS, FACP, FACMI,
Page 27 and 28: mining techniques such as machine l
Page 29 and 30: and writing for the Health Informat
Page 31 and 32: London. He holds a BS in Computer S
Page 33 and 34: AMIA Invitational Health Policy Mee
Page 35 and 36: Project Overview Purpose/Type of Da
Page 43 and 44: Non-traditional Data Sources Purpos
Page 45 and 46: Agency or Organization Centers for
Page 47: Agency or Organization National Com

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