California HealthCare Foundation – Supporting ideas and innovations to improve health care for all Californians.

PHRs & Privacy

Safeguarding the confidentiality of personal health information is a fundamental principle in health care, both on- and offline. And as demand increases for highly portable personal health records, the risks to privacy increase while the challenges for protecting it also grow. CHCF surveys consumer attitudes, monitors industry practice, and reports on health privacy policy and regulation.

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Consumers and Health Information Technology: A National Survey

April 2010

A national survey looks at the use of and attitudes toward personal health records (PHRs) and other health IT. The findings indicate that users of PHRs say they become more engaged in their health as a result of being able to access their medical information online.

Electronic Release of Clinical Laboratory Results: A Review of State and Federal Policy

January 2010

The sharing of lab results with providers and patients is subject to an array of federal and state laws. This paper provides information to help policymakers understand the issues.

Briefing — Health Information Privacy under California Law and Federal Stimulus Legislation

June 26, 2009

This briefing discussed the interactions of federal and state privacy provisions, including those established by the recent federal economic stimulus legislation.

The Impact of Federal Stimulus Efforts on the Privacy and Security of Health Information in California

May 2009

This issue brief analyzes the health privacy legal landscape in California before 2009 and discusses changes made by the enactment of the American Recovery and Reinvestment Act of 2009.

Safety-Net Providers Bring Patients Online: Lessons from Early Adopters

April 2009

Online tools such as electronic health record (EHR) portals and personal health records (PHRs) are being offered to patients by some enterprising safety-net providers. A new report looks at four organizations that are making these valuable resources available.

The Transformative Promise of Health Information Technology

March 2009

The March/April 2009 issue of Health Affairs explores health information technology: its transformative promise, the challenges to its adoption, and the dangers posed if that adoption is not done right. Select articles are available at no cost through CHCF.

Health Privacy Reports from the Center for Democracy and Technology

January 2009

The application of new tools for sharing medical data must keep in sight the personal privacy rights of patients. To help clarify the issues surrounding health privacy, CHCF cofunded a series of reports by the Center for Democracy and Technology.

Helping Patients Plug In: Lessons in the Adoption of Online Consumer Tools

June 2008

Surveys suggest that three out of four patients want some sort of online connection with their medical providers. This report examines how patient-oriented HIT is evolving by looking at clinical settings in five regions, including California.

A Delicate Balance: Behavioral Health, Patient Privacy, and the Need to Know

March 2008

This issue brief explores the laws governing health information privacy as they relate to mental health and substance abuse treatment, and presents three scenarios illustrating the challenges in finding the right balance between privacy and disclosure.

Whose Data Is It Anyway? Expanding Consumer Control over Personal Health Information

February 2008

This publication explores the technological and legal landscape governing personal health information, as well as key issues that must be addressed for consumers to have an appropriate level of control over their own health records.

Best Practices for Employers Offering Personal Health Records (PHRs)

December 2007

These best practices are intended to serve as aspirational guidelines for employers, not a one-size-fits-all solution, as companies develop and implement their own PHR-related policies and practices.

Privacy, Security, and the Regional Health Information Organization

June 2007

This report examines key privacy and security issues that regional health information organizations may encounter and the policies and practices they adopt to manage those issues.

Perspectives on the Future of Personal Health Records

June 2007

This report assesses the promises, perils, and the challenges of personal health records and the impact they could have in the coming years based on the perspectives of leading experts in the field.

Designing a Consumer-Centered Personal Health Record

March 2007

The Breast Care Center at UCSF designed an application build a customized care plan for patients diagnosed with breast cancer. Such patient-centered PHRs may remind a patient to take medications, provide tailored decision prompts to help people understand and adhere to treatment regimens, or transmit data to providers.

Personal Health Records: Employers Proceed with Caution

January 2007

This issue brief examines employer initiatives to adopt personal health records (PHRs) as a tool to cut costs and improve efficiency. It explores the pros and cons of PHRs and offers a road map for adoption.


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