Public Comments: April 2008 – Freedom of Information Act Request; NHIN Cooperative Workgroups



Freedom of Information Officer
Mary E. Switzer Building,
Room 5416
300 C Street, S.W.
Washington, D.C.   20201

Re: Freedom of Information Act Request; NHIN Cooperative Workgroups 

April 2, 2008


Dear Sir or Ms.:

This letter constitutes a request under the Freedom of Information Act (“FOIA”), 5 U.S.C. § 552, and is submitted on behalf of the World Privacy Forum.

According to DHHS’s Program and Participation Book, 4th Nationwide Health Information Network Forum: Trial Implementations, December 11-12 2007, p. 6, the NHIN trial implementations are being carried out through workgroups of an entity known as the NHIN cooperative:

The trial implementations activities are being carried out through Workgroups of the NHIN Cooperative. Co-chairs of those Workgroups will provide a brief description of their activities and discuss the relevant input they have heard from this Forum. [Program and Participation Book at 6, bold added for emphasis].

According to the Program and Participation Book, the following NHIN cooperative workgroups, also known as NHIN Cooperative WGs,  exist:

  • NHIN Cooperative Technical and Security Core Services workgroup [Program and Participation Book at 5].
  • NHIN Cooperative Core Services Content workgroup [Program and Participation Book, Agenda Updates for Wed., December 12, 2007].
  • NHIN Cooperative DURSA workgroup [Program and Participation Book at 5]. This group is also known as Data Use and Reciprocal Support Workgroup.
  • NHIN Cooperative Testing workgroup [Program and Participation Book, Agenda Updates for Wed., December 12, 2007].

A November 28, 2007 presentation to the NCVHS by ONC’s John W. Loonsk, ONC Update on Standards Harmonization and NHIN Trial Implementations, mentions the above workgroups plus these additional three workgroups:

  • Consumer Perspectives Work Group
  • Provider Perspectives Work Group
  • Population Perspectives Work Group

[Slide 14, <>]

According to meeting minutes for a Certification Commission for Healthcare Information Technology Commissioner Meeting on October 15, 2007, NIST and CCHIT will be involved in the NHIN Cooperative. In this meeting, the NHIN Cooperative was described as a crucial entity that was to be developing detailed specifications for the NHIN:

Awards were made at the end of September for trial implementation to nine health information exchanges. Each represents a state or regional HIE in a “classic” model for RHIO or HIE. These nine organizations, plus potentially one more, along with federal partners will form an NHIN cooperative. They will develop highly detailed specifications required to create a network of networks. They will concentrate on a few different capabilities, such as retrieval across systems, and will create consumer access controls for network exchange of health information. This will be a foundation for other initiatives to develop common standards and architecture. [Commission Minutes at 3, bold added for emphasis. <>].

Despite the above noted foundational importance of these workgroups, a search of HHS’s web site yields little to no documentation of these workgroups, their members, co-chairs, meetings, documents, or activities. A mention of the NHIN Cooperatives is made here, <>, but no further information is readily available about the cooperative workgroups, their work products, or even members.

We therefore request a copy of all the following materials:

  • Meeting notices, announcements, and schedules for all NHIN Cooperative workgroups;
  • Meeting notices, announcements, and schedules for all subcommittees of NHIN Cooperative workgroups;
  • All materials distributed to workgroup members by HHS, whether on behalf of HHS, workgroup members, or other parties;
  • All reports, letters, and other documents approved by the workgroups,
  • All drafts of workgroup documents circulated to workgroup members;
  • All membership lists for the workgroups, including affiliations, biographies, and contact information for workgroup members and staff;
  • The URLs of web sites or web portals used for disseminating workgroup materials,
  • All minutes of workgroup and subcommittee meetings;
  • All lists of workgroup meeting attendance (including affiliation and contact information), including workgroup members, HHS staff, witnesses, outside participants, members of the public, contractors, press, and any other attendees;
  • All other materials related to, generated by, created for, or distributed to all NHIN Cooperative Workgroups including but not limited to the following workgroups:
  • NHIN Cooperative Technical and Security workgroup
  • NHIN Cooperative Core Content workgroup
  • NHIN Cooperative DURSA workgroup. This group is also known as Data Use and Reciprocal Support workgroup.
  • NHIN Cooperative Testing workgroup
  • NHIN Cooperative Consumer Perspectives workgroup
  • NHIN Cooperative Provider Perspectives workgroup
  • NHIN Cooperative Population Perspectives workgroup

The World Privacy Forum is a 501(c)(3) nonprofit, nonpartisan, educational, and public interest research organization. Our focus is on conducting in-depth research and analysis of privacy issues, including issues related to health care. The World Privacy Forum also provides consumer education.

As a non-profit public interest organization that qualifies as a representative of the news media because of its demonstrated ability to disseminate information to the public and because of its expressly stated IRS exempt purposes as a non-profit news and research organization, we seek a waiver of all fees for processing this request.

You may visit our web site to find examples of research and writings that we disseminate to the public and the press.  A leading example is our report Medical Identity Theft: The Information Crime that Can Kill You, <>. This report is a groundbreaking report which documented and brought the crime of medical identity theft to the attention of the public for the first time and received extensive attention from the public, press, and policy makers. You may see examples of the press coverage the World Privacy Forum’s reports have received here: <>.

Disclosure of the information is not primarily in the commercial interest of the requester. The World Privacy Forum is a non-partisan, non-profit public interest research and consumer education organization that has no commercial interests.

Disclosure of the requested information to our organization is in the public interest because it will contribute significantly to public understanding of the NHIN Cooperative and its workgroups. The subject of the requested information will directly illuminate government activities for which information is unavailable otherwise.  As far as we can tell, information regarding the NHIN Cooperative Workgroups, a topic of vital public interest, have not been made generally available to the public.

The NHIN and its related activities is of clear and vital public interest. President Bush has issued Executive Order 13335 (2004) establishing incentives and deadlines for the use of health information technology. Under Health and Human Services Secretary Mike Leavitt, the Office of the National Coordinator of Health Information Technology (ONC) was created in order to address interoperability issues and to establish a National Health Information Network (NHIN). Leadership of ONC have testified regarding the NHIN, noting that the technology will save lives (See for example, CQ Congressional Testimony, Statement of David J. Brailer, National Coordinator, Health Information Technology, Department of Health and Human Services, Committee on House Government Reform Subcommittee on Federal Workforce and Agency Organization, July 27, 2005.) If an agency activity has the potential to save lives, it is of vital public interest.

Additionally, the topic of the NHIN has been featured in numerous high-profile articles over the past several years. The following is a very brief selection of the hundreds of articles written about the topic, including some very recent articles about new NHIN developments which are being followed closely:

  • Modern Healthcare, Joe Conn, Power to the Patient; HHS panel backs limited control over data access, March 10 2008.
  • Health Management Technology, Michael McBride, In Defense of a Nation, March 2008.
  • Information Week, Marianne Kolbasuk McGee, Health Care, Privacy is a Journey, February 5, 2007.
  • The New York Times, Steve Lohr, Microsoft to Offer Software for the Health Care Industry, July 27, 2006.
  • Consumer Reports, Have you Heard? Your Medical Data, in Bits and Bytes, March 2006.
  • Business Week, Improvements in Medical Data are Just the Beginning, November 28, 2005.
  • Business Week, Timothy J. Mullaney, This Man Wants to Heal Healthcare; David Brailer’s job is to sell Bush’s plan for rewiring American medicine. If he can, it could save lives — and hundreds of billions of dollars, October 31, 2005.
  • The Washington Post, Christopher J. Gearon, A Personal Record, March 15, 2005.
  • Business Week, Carol Marie Cropper, Between You, the Doctor, and the PC, January 31, 2005.

These articles indicate the clear and ongoing public interest in the activities relating to the NHIN.

Given the crucial foundational work the NHIN Cooperative Workgroups are conducting, and given the consistent and ongoing public attention and newsworthiness of the NHIN, and given the importance Secretary Leavitt places on the NHIN, these materials on the NHIN Cooperative are of key and vital importance for the public.

The World Privacy Forum’s past record of putting health privacy information before the public and the press demonstrates its expertise in the subject area and its ability to effectively convey information to the public.  The work of the NHIN Cooperative affects every patient in the United States and is of the broadest public interest.

In order to reduce costs and to ease any copying burden, we request copies of the materials in electronic form. We request that any electronic format that is used is readily and easily accessible on commonly available software that does not require specialized skills, computers, or programs to access or use.

If you have any questions about this request or need to discuss it further, please call Pam Dixon at 760-436-2489, or email her at Thank you for your consideration of this request.



Pam Dixon
Executive Director,
World Privacy Forum