Coalition for Patient Privacy


Strategy Overview

The Coalition for Patient Privacy is a diverse, multi-partisan group of organizations, individual experts, and technology corporations. Today we represent over 10 million patients and consumers. We are a collaborative group united by a common goal: to protect patient privacy and encourage adoption of Health IT.

Our Principles

The Coalition for Patient Privacy, led by Patient Privacy Rights, developed the following privacy principles to serve as standards for legislation in Congress. Without these ironclad privacy protections, consumers will not trust or participate in any electronic health system.

  • ACCOUNTABILITY – Hold every entity with access to health information accountable.

We have learned the painful lessons of letting industry set its own rules. Consumers no longer trust that corporations will use personal health information only as directed or guard it from theft or loss.

Those who collect, store or use personal health information should help ensure that the data is accurate, reliable and secure.  Minimum standards should include: encrypting data at rest and in transit, limiting access to specific individuals via informed, electronic
consent and audit trails of all electronic transactions.

  • CONTROL – Ensure individuals control the use of their personal health information.

Fundamental to the Code of Fair Information Practices and most professional Codes of Ethics is an individual’s right to control how their personal information is used.  We fight to ensure that individuals can segment sensitive information and that safeguards for medical information are built in up front before problems arise.

We provide incentives for health IT systems to use electronic informed consent, innovative consumer privacy controls and for user interfaces to be accessible for patients with disabilities.

  • TRANSPARENCY – Protect consumers from abusive practices.

Personal health information should not be sold and shared as a typical commodity.  Health information is different; it is extremely sensitive and can directly impact jobs, credit, and insurance coverage. Commercial transfers undermine routine privacy safeguards, including transparency and accountability.

We work to prohibit direct or indirect remuneration for the sharing, disclosure or use of personal health information with limited exceptions for research and public health, and we fight to ensure that corporations cannot obtain exclusive or contractual rights to own or control personal health information. We have evidence that selling of this data is happening at major companies (details available upon request).

Personal health information obtained for one purpose must not be used for other purposes without informed consent. Even when consent is obtained, privacy obligations such as security and prevention of misuse, continue.

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The Challenge

Although many advances in information technology can improve quality of healthcare, electronic personal health information exchange introduces many risks to people’s privacy.  The exchange of medical data in today’s technologically advanced world can present opportunites for information breaches on a massive scale.  Criminals pay more for stolen personal health information than they do for credit card information.

According to a recent study on patient privacy and data security, conducted by the Ponemon Institute, 94 percent of healthcare organizations surveyed suffered at lease one data breach in 2011 and 2012, with 45 % of these organizations actually experiencing more than five data breaches during the same period.  Privacy and security challenges will continue to play a significant role in healthcare in correlation with the surge of information technology and the benefits that this new technology brings to patient care.

The Opportunity

Why Privacy is Important: People want to have control over their own health records.  A growing number of evidence suggests that increasing people’s control over their health information can help accelerate the rate at which they become more involved in their own health issues.  The Coalition for Patient Privacy has the perfect opportuntiy to increase patient engagement. Our goal is to educate people on the many different ways that their medical records are currently being shared and how they can prevent future sharing without their consent.

The Coalition is a diverse group and as such it has the opportunity engage policy makers to advocate for consumers’ right to privacy and control of their health information.  We work to empower individuals to protect their personal health information and provide them with the tools to do so effectively.  We provide technical, ethical, legal, and health policy expertise from the consumer point of view for Health IT challenges and opportunities.  Innovative technology, policy, laws, and regulations can strengthen privacy protections and assure that electronic health systems will be trusted and used.

Join us

Please email us or contact us at 512-732-0033 if your organization wants to support the principles and join the Coalition.