To follow up on the recommendations of the 2006 blue ribbon panel, AMIA convened an expanded expert working group of experts, leaders, and citizens to further develop a national framework for the secondary use of health data on June 14th and 15th at the Hyatt in Reston Virginia. We initiated three technical working groups that informed the larger gathering in order to develop a comprehensive taxonomy of use and users of secondary health data, to review technologies that are used to de-identify data sets and re-identify data sets of “anonymous” data, and to define data stewardship and related policy issues.

We anticipate that the meeting will help further clarify the societal, public policy, legal, and technical issues in the context of secondary use of data and we expect to produce a number of work products. This process is led by Charles Safran, MD, past AMIA Chair and Don E. Detmer, MD, President and CEO of AMIA oversees this effort with staff support by Meryl Bloomrosen, MBA, Associate Vice President, AMIA.

News

• AMIA Taxonomy on Secondary Data Use Version 1.0
• AMIA Letter to NVCHS
• AMIA Testifies at NCVHS Ad Hoc Workgroup on Secondary Uses of Health Data Meeting, July 18, 2007
• AMIA Presents at the AHIC Consumer Empowerment Work Group Meeting, July 11, 2007

Preliminary Meeting Materials

• Discussion Questions
• Taxonomy of Secondary Data
• Data Stewardship Definition
• Data Stewardship Principles
• Scenarios for Secondary Data Use
• Work Poster for Data Attributes
• Draft Consumer Checklist

Secondary Data Meeting Agenda and Presentations

• Agenda
• Secondary Data Introductory Slides
• Taxonomy Working Group
• Data Stewardship Working Group
• Game Changers: The New Hampshire Prescription Restraint Law
• International Panel
• Secondary use of health: Some scenarios and solutions
• Using secondary data to cross the quality chasm…dilemmas in implementation.. don’t just rely technology + policy
• Secondary Uses of Primary Care Data in the UK
• Data Analytic Principles
• Secondary Use of Data: Commercial Purposes
• OCR Resources on HIPAA Permissible Uses and Disclosures
• Secondary Use of Health Data in Translational Research

Selected Resources and References

AHRQ Reports

• Establishing a Foundation for Medicaid's Role in the Adoption of Health Information Technology: Opportunities, Challenges, and Considerations for the Future
• Registries for Evaluating Patient Outcomes: A User's Guide
• Collecting and Reporting Data for Performance Measurement: Moving Toward Alignment

NIH Reports

• caBIG-Plus™ Conceptual View: Beyond Cancer (July, 2006)
• caBIG™: Opportunities and Challenges for Use Beyond Cancer
• caBIG™ Overview (May, 2006)
• Health Services Research and the HIPAA Privacy Rule NIH Publication Number 05-5308 (May, 2005)
• Clinical Research and the HIPAA Privacy Rule NIH Publication Number 04-5495 (February, 2004)
• Institutional Review Boards and the HIPAA Privacy Rule NIH Publication Number 03-5428 (August, 2003)

JAMIA Articles http://www.jamia.org/preprints.shtml

• Rapidly Retargetable Approaches to De-identification in Medical Records
  Ben Wellner, Matt Huyck, Scott Mardis, John Aberdeen, Alex Morgan, Leonid Peshkin, Alex Yeh, Janet Hitzeman, and Lynette Hirschman
  J. Am. Med. Inform. Assoc. published ahead of print on June 28, 2007 as doi:10.1197/jamia.M2435
  
• State-of-the-art anonymisation of medical records using an iterative machine learning framework
  György Szarvas, Richárd Farkas, and Róbert Busa-Fekete
  J. Am. Med. Inform. Assoc. published ahead of print on June 28, 2007 as doi:10.1197/jamia.M2441
  
• Evaluating the State-of-the-Art in Automatic De-identification
  Özlem Uzuner, Yuan Luo, and Peter Szolovits
  J. Am. Med. Inform. Assoc. published ahead of print on June 28, 2007 as doi:10.1197/jamia.M2444
  

Taxonomy

• Confidentiality of personal health information used for research (pdf)
• Consent for the use of personal medical data in research (pdf)
• Overcoming barriers to recruitment in health research (pdf)
• Balancing potential risks and benefits of using confidential data (pdf)

Selected Links

• Office for Human Research Protections (OHRP)
• Secondary Use of Personal Information in Health Research: Case Studies, November 2002
• Adding Value to the Electronic Health Record Through Secondary Use of Data for Quality Assurance, Research, and Surveillance

2007 Conference Sponsors

• Deloitte
• GE Health
• GlaxoSmithKline
• IBM
• IMS Health
• The Lewin Group
• Lockheed Martin
• Eli Lilly and Company
• Northrop Grumman
• Pfizer
• Thomson Health