Health information technology (“Health IT” or “Electronic Medical Records” or “Personal Health Records (PHR)”) has tremendous potential to improve health care quality and reduce costs while empowering patients to play a greater role in the management of their own care. At the same time, however, electronic storage and exchange of personal health information poses risks to privacy. Unaddressed, privacy concerns can stand in the way of realizing the benefits of health IT, for neither patients nor providers will make full use of a system they do not trust.
As corporations such as Google (Google Health), Microsoft (Microsoft HealthVault), IBM (IBM Healthcare and IBM Health Integration Framework for Healthcare Providers), and UnitedHealth Group (MyOptumHealth.com) develop personal health systems (PHS) to exchange private medical records and health information, consumers must demand fully transparency in the use of their data and require access to check and verify their own personal records.
Federal laws give you the right to see, get a copy of and amend (correct) your medical record by adding information to it. Additionally, most states have laws that give you rights to your medical records. The following organizations help consumers and patients navigate the complex relationships between privacy, security, confidentiality, and the management of personal electronic health records.
The Prescription Project (The Pew Charitable Trusts)
Created with the Pew Charitable Trusts, the Prescription Project seeks to eliminate conflicts of interest created by pharmaceutical marketing by promoting policy change within academic medical centers, professional medical societies and public and private payers. In addition, the Prescription Project will advance state and national level policy solutions. New prescription drugs and medical devices are revolutionizing the practice of health care, enhancing disease management and improving quality of life. However, aggressive pharmaceutical marketing to physicians is creating real and perceived conflicts of interest in the medical profession and raising questions about the appropriateness of treatment choices. These practices can compromise patient care and increase health care costs. It is essential that physicians base their prescribing decisions on accurate and unbiased information, not on misleading marketing materials.
www.PrescriptionProject.org
Georgetown University’s Center on Medical Records Rights and Privacy
Georgetown University’s Center on Medical Records Rights and Privacy provides state-specific guides to help consumers access their medical records and electronic medical records. The Center on Medical Record Rights and Privacy is based at Georgetown University’s Health Policy Institute, a non-partisan multi-disciplinary group of faculty and staff dedicated to conducting research on key issues in health policy and health services research. The Center is dedicated to raising public awareness of the rights and responsibilities associated with medical records and other health information. The Center focuses on a range of topics related to consumers’ rights to their own medical records and privacy protections afforded to this information. The Center has expertise in the Health Privacy Rule issued under the Health Insurance Portability and Accountability Act (HIPAA), the Fair and Accurate Credit Transactions Act as well as state laws that address medical record rights and privacy. The Center provides information on these topics to a broad range of stakeholders such as policy makers, health care professionals, consumers, and the media through research studies, policy analyses, testimony, and consumer guides.
http://hpi.georgetown.edu/privacy/records.html
The Health Privacy Project
The Center for Democracy and Technology’s Health Privacy Project addresses policy questions, including: the proper role of notice and consent, the right of patients to access their own health records, identification and authentication, secondary uses, and enforcement mechanisms. The Center for Democracy and Technology’s Health Privacy Project also tackles the traditional exchange of records among health plans and providers, as well as new consumer access services and personal health records. The Health Privacy Project is a resource for information on medical records confidentiality. Its web site includes information on federal HIPAA regulations as well as state laws of all 50 states.
www.healthprivacy.org
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