On Friday, October 23, 2009, the Coalition for Patient Privacy sent in comments to HHS on the Breach Notification Interim Final Rule (IFR). Not only were Patient Privacy Rights and the Coalition dismayed and disappointed by the IFR, as several key members of Congress wrote a letter to the Secretary of HHS missed the mark, eliminating consumer protections intended by Congress. Read the letter from these congressmen here. See the full letter from the Coalition here.

8/20/09: HHS issues its Interim Final Rule. Public comments are due by October 23, 2009.

On May 21, 2009 the Coalition for Patient Privacy submitted comments to the Department of Health and Human Services on breach notification. Specific standards and criteria included encryption, destruction and limited data sets. To see more specific standards as well as direct answers to some of HHS’ questions, you can view our letter here. Also see HHS’ official request for information.

Patient Privacy Rights also submitted comments to the Federal Trade Commission on breach notification Monday, June 1, 2009. You can view these comments here.

The Health IT Policy Committee recommends policies to guide how the nation’s health IT networks are built and how they will work. The committee is dominated, however, by people from the health and technology industries, so consumers’ and patients’ interests and rights are not being adequately heard or addressed.

Patient Privacy Rights is closely tracking these meetings on behalf of the bipartisan Coalition for Patient Privacy.

The Coalition for Patient Privacy then sends comments to the committee. The Coalition proposed using existing, strong privacy enhancing federal policies and technical solutions to make sure that consumers’ rights to control their sensitive personal health data are built into all electronic health records (EHRs) up front.

The committee met on July 16, 2009.

The Coalition for Patient Privacy delivered a letter to all members of the committee on August 3rd. The Coalition recommended that key consumer protections be dealt with as soon as possible, not delayed 6 years, as the committee proposed to ensure that Americans can trust the nation’s HIT system.

View the letter with full comments and recommendations here.
Please help by signing your name to the petition endorsing these recommendations for the HIT Policy Committee.

On June 26, 2009 the Coalition for Patient Privacy submitted comments to the HIT Policy Committee on Meaningful Use. The key critical function needed in every EHR to enable “meaningful use” of EHR data is the ability for patients to control the uses and disclosures of all protected health information (PHI), and this was the main recommendation. You can view our full comments here.

On Monday, February 2nd, 2009 the Coalition for Patient Privacy urged the Senate to keep health privacy in the American Recovery and Reinvestment Act, S. 1. This bill has many of the privacy provisions Patient Privacy Rights has been working for since we were founded, most important being the prohibition on the sale of protected health information (SEC. 13405(e)). It is crucial that the Senate reject calls from industry to spend taxpayer dollars without Accountability, Control, and Transparency. There are more privacy provisions in this bill as well as proposed provisions which we support.

Read the Coalition’s letter to the Senate here.

The Coalition for Patient Privacy urged the 111th Congress to include privacy protections in any federal Health IT legislation. January 14th, 2009, a press conference was held to ensure much needed privacy protections are included in any funding given to implement health IT systems in the proposed economic stimulus package.

During this event and in their letter, coalition partners called on Congress to “A.C.T.”, by providing: accountability for access to health records, control of personal information, and transparency to protect medical consumers from abuse. Consumer trust is essential to health IT adoption and participation and only attainable with privacy safeguards.

Read the Coalition’s letter to Congress here and the press release here.

View some of the news coverage from this conference:

• Privacy Groups Urge Leaders to Ensure Safeguards for IT, CongressDaily, 01/15/2009
• Bipartisan Coalition Sends Letter to Congress Urging Privacy Protections With Health IT, Medical News Today, 01/15/2009
• Economic Stimulus Package Likely To Cost $850 Billion, With Up To $90B for State Medicaid Programs, Kaiser Network, 01/15/2009

View our 2007 Privacy Principles here.

The Coalition for Patient Privacy 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.
• CONTROL – Ensure individuals control the use of their personal health information.
• TRANSPARENCY – Protect consumers from abusive practices.

View the full letter including in depth descriptions of these principles here.

View the 2006 Coalition Members or 2007-2008 Coalition Members

AIDS Action	Senatory Karen Johnson (AZ)	Alliance for Patient Safety
JustHealth	American Association of People with Disabilities	Justice Through Music
American Civil Liberties Union	The Liberty Coalition	American Foundation for the Blind
Microsoft Corporation, Inc.	Arizona Eagle Forum	The Multiracial Activist
Bazelon Center for Mental Health Law	Representative Elliot Naishtat (TX)	Bill of Rights Defense Committee
National Association of Social Workers	Breast Health and Healing Foundation	National Center for Transgender Equality
Citizens for Health	National Coalition for LGBT Health	Citizens Outreach Project
The National Coalition of Mental Health Professionals and Consumers	Clinical Social Work Association	National Workrights Institute
Confederation of Independent Psychoanalytic Societies	New Grady Coalition	Consumer Action
Senator Marc Pacheco (MA)	Council For Responsible Genetics	Patient Privacy Rights Foundation
The Cyber Privacy Project	Private Citizen, Inc.	Esther Dyson
Representative Cindy Rosenwald (NH)	Electronic Privacy Information Center (EPIC)	Bruce Schneier
Ethics in Government Group	Student Health Integrity Project	Fairfax County Privacy Council
Telecommunications for the Deaf & Hard of Hearing, Inc.	Georgians for Open Government	Thoughtful House Center for Children
Government Accountability Project	Tolven, Inc.	Health Administration Responsibility Project, Inc.
U.S. Bill of Rights Foundation	Health Integrity Project	Velvet Revolution
International Association of Whistleblowers

In October 2007, nearly 50 organizations joined the Coalition for Patient Privacy to announce and deliver our 2007 Letter to Congress demanding that consumers control their personal health information in electronic health systems. The letter includes the Coalition’s updated the Privacy Principles. At the October 18, 2007 press conference Rep. Ed Markey (D-MA) joined Coalition members representing Patient Privacy Rights, the ACLU, the U.S. Bill of Rights Foundation and Microsoft Corporation, Inc. in calling for legislation to restore our right to health privacy. Read the 10/18/07 press release.

In 2006, the Coalition authored three letters to Congress and several joint press releases. You can view the letters and members here.

You can find the letters and members from 2007-2008 here.