"If my patients fear that what they tell me could come back to haunt them, they'll tend to be less forthright. I may come up with the wrong treatment because I was chasing the wrong clues."

Nancy Dickey, M.D., Chairman, Board of
Trustees, American Medical Association, The Nightengale News, Sept/Oct 1996

• Minnesota Plans to Collect Patient Data is Challenged

• Congress to Gut State Medical Privacy Laws? - Implications for the Public
  (CCHC Chart on HR 4157)
• "ACTION ALERT: U.S. Plans to Adopt National Medical Records Information System"
  PUBLIC COMMENT DEADLINE: Monday, January 18, 2005
• "CCHC's public comments on proposed National Health Information Network"
• "Big Government" in Your Medicine Cabinet?! Act Now!

• Home Visiting by Government Workers: Families Under Surveillance
• Immunization Registries
• Birth Defect Registries
• Psychological Testing in Schools
• Gathering Social Security Numbers through schools
• Schools and Health Care
• Protecting the Child's Medical Confidentiality in School

• Top Ten Medical Confidentiality Strategies for patients
• Concerns about federal Privacy Rule remain
• A Simple Privacy Rule - proposed by CCHC
• No Privacy in the Federal Medical Privacy Rule - CCHC Speech

• Birth Defect Registries
• Immunization Registries
• Federal OASIS home health care database - CCHC publishes 10 concerns
• Health care identification numbers - National systems
• Social Security Numbers
• Medical Records Law in Minnesota Allows Access without Patient Consent
• Health Care Smart Cards
• Health Passports In a public-private initiative to bring smartcards (plastic cards with embedded computer chips) into the health care industry, public and private funding is directed at a new three-state initiative. The Western Governors' Association (WGA) will pilot the Health Passport Program in three cities. (Cheyenne, WY; Bismarck, N.D.; and Reno, NV) According to the WGA, the HPP "is one dimension of a much broader public health strategy for the next century...it will ensure convergence with financial and retail industry plans for a universal transition to smart cards by the year 2000." The intent is "[e]xpanding the population of potential HPP card holders so that it can serve as a portable medical record or access key for a majority of providers' patients." The director of the Bismarck project expects the cards to rollout in May 1999. This could be similar to the "MNCard" defeated in 1997. More information can be found at Enhanced Electronic Benefit guidelines (88 pages)
• Unique Patient Identifiers
  • Testimony by United Health Care
  • CCHC Testimony
  • Testimony by Mayo Foundation
• Master Patient Index:
  • Sequoia Software Corporation working with federal government to develop a Master Patient Index (MPI) to link all patient medical records without use of national ID number.
  • From Project Brief, last updated 2/28/98: "Develop a Master Patient Index that combines and correlates computerized patient records from different healthcare organizations. Such a system could save lives by providing immediate access to summary medical records in emergencies, increase detection of fraud in Medicare and Medicaid programs, reduce the costly duplication of medical tests and increase provider productivity."
  • October 1997 Press release from Sequoia Software Corporation titled Sequoia Software Chosen to Link U.S. Patient Records: Sequoia Corporation has received a grant from the U.S. Commerce Department's National Institute of Standards and Technology (NIST) as a result of winning the Department-sponsored Advanced Technology Program competition in the category of "Information Infrastructure for Healthcare." The MPI will be a method to link records by indexing to correlate and cross-reference patient identifiers such as name, birthday and Social Security number. Sequoia's product is Medstar, an SGML/XML-based solution for summary patient records and health care transaction management. The use of these national standards for information interchange will enable the seamless flow of data across different technology platforms throughout widely-spread networks.
  • An August 26, 1998 Sequoia press release titled Sequoia Software Partners with Johns Hopkins Health System in Building National Master Patient Index states that JHHS will be the "testbed for the development of healthcare's national Master Patient Index (MPI)" According to Sequoia, "The MPI is key to the creation of a secure computer network allowing an authorized doctor or healthcare provider anywhere in the nation to quickly access a patient's medical information."
  • The amount of the grant is yet unknown. Contacts at Sequoia: Jeff Mason, jeffm@sequoiasw.com (410-715-0206, ext. 226) or Wes Shaffer, wshaf@cstoneadv.com (410-727-2131, ext. 216)

• GAO Reports on Privacy Regulations, Social Security Numbers, Security of Federal Data Systems
• 1/20/99: The Joint Commission on Accreditation of Healthcare Organizations and the National Committee for Quality Assurance(NCQA) in a report called Protecting Personal Health Information: A Framework for Meeting the Challenges in a Managed Care Environment, warn that patients who are worried about the privacy of sensitive personal and medical information may withhold information from health care professionals, increasing the risk of misdiagnosis and inadequate or inappropriate treatment.

Health Care Surveillance and Medical Research

All Kids Count - Robert Wood Johnson Funding Program for immunization registries

Centers for Disease Control and Prevention - Home Page

Centers for Disease Control - health care surveillance

Every Child By Two (ECBT) - American Nurses Foundation initiative

G-7 Global Healthcare Applications Project.

Health Resources and Services Adminstration - Maternal and Child Health Bureau

HHS Data Council

"The HHS Data Council coordinates all health and non-health data collection and analysis activities of the Department of Health and Human Services, rincluding an integrated health data collection strategy, coordination of health data standards and health information and privacy policy activities. The Secretary has placed the Data Council in charge of the implementation of the Administrative Simplification provisions of the Health Insurance Portability and Accountability Act of 1996."

March of Dimes - supports registry of persons on birth defect databases without parent or patient consent

Mayo Clinic

National Committee on Vital and Health Statistics (home page)

National Committee on Vital and Health Statistics (core health data elements for collection)

National Immunization Registry Clearinghouse - registry specifics

National Immunization Program (home page)

National Health Information Resource Center - Funded in part by RWJF; members only site

Office of the Assistant Secretary for Planning and Evaluation

Robert Wood Johnson Foundation - RWJF in Minnesota

 

Other Organizations

Human Genome Organisation (HUGO)

International Biometric Industry Association

"THE WORKFORCE ATM" - run by the Center for Employment Security Education and Research, and the U.S. Department of Labor. Data entered by States

World Health Organization

Medical Information Bureau

American Health Information Management Association