National Institutes of Health (NIH)

From WikiAdvocacy

National Institutes of Health (NIH)

The NIH is one of the eight agencies of the Public Health Service, a part of the United States Department of Health and Human Services. It encompasses 27 institutes devoted to specific areas of the body or types of conditions. The NIH exists to gather and put into practice information to help relieve human health conditions, from the minor to the life threatening. The NIH conducts research, funds research conducted by other groups, provides education for professionals and the public, and participates in training programs.

Council of Public Representatives (COPR)

The NIH Director's Council of Public Representatives (COPR) is a federal advisory committee made up of members of the public. It advises the NIH on issues related to public input and participation in NIH efforts including programs and the way that priorities are set for NIH research.

The COPR has 21 members, selected in an open application process. (Details can be found at their website). New members are selected annually, but becoming a member of the Council is not the only way to participate. You can also attend public meetings of NIH institutes as well as COPR meetings, all of which are open to the public. The agendas and meeting minutes are posted on COPR's website.

COPR also has an Associates Program. COPR receives far more applications for the Council than it has slots, so it invites people to consider becoming a COPR Associate, a role which does not have a term limit, as the Council participation does. COPR Associates contribute comments on a variety of NIH draft plans, guidelines, and documents, and they participate in NIH panels, work groups, and meetings.

Serving on the COPR

Nancy Buelow
Alpha-1 Association

"I was appointed to the National Institute of Health Director's Council of Public Representatives (COPR) in April of 2002 for a three-year term. This is an exciting time at NIH and I am pleased to be a small part of it. COPR is a federal advisory committee, made up of members of the public that advises the NIH Director on issues related to:

  • Public input and participation in NIH activities
  • Public input and participation in the NIH research priority setting process
  • NIH outreach programs and efforts

At my first COPR meeting we worked with Dr. Ruth Kirstein, Acting Director of NIH at the time. We are now working with the newly appointed Dr. Zerhouni. Dr. Kirstein still plays an active role in the COPR meetings.

The COPR is made up of 21 people from across the country who have been chosen to represent the public through an open application process. They are patients, family members of patients, health care professionals, scientists, health and science communicators, and educators.

By serving as a public voice to the NIH, COPR members:

  • Bring important matters of public interest to NIH leadership.
  • Help increase public participation in the many NIH activities and initiatives that affect the public.
  • Increase public understanding of the NIH and its programs.

Please visit the COPR web sitefor regular updates and activities."

Serving on the COPR

Vicki Kalabokes
Tuberous Sclerosis Alliance

"The National Institutes of Health (NIH) Council of Public Representatives (COPR) was established in 1999 to advise and make recommendations to the NIH Director on issues and concerns that are important to the broad development of programmatic and research priorities. The most important aspect of this council is that it is a total public body. Other advisory councils on the NIH campus have public members, but there is not one body that is all public members. COPR was formed to assist NIH in enhancing the participation of the public in NIH activities that have an impact on the public, in increasing public understanding of NIH and its programs, and in bringing important matters of public interest forward for discussion in public settings.

I was excited with the aspect of being a founding member of this new Council. Not only did I represent diseases in every institute through my personal involvement with my immediate family, I felt that my experience in coalescing many different patient groups together for one goal would enhance my participation in bringing a broader perspective of public input to the NIH. I was right. All members leave their diseases at the door. One would never know members' affiliations, as everyone on the council is very ecumenical and approaches every subject with that in mind. We have been able to make significant input as issues arise.

There is no intimidation factor when it is all public. We are more open and discuss all issue openly and forcefully. We know we have important input that must be heard; it is sincere and valid public input. The Council members have taken their charge seriously and have worked very hard. We have some weeks of about ten hours a week, but a normal week is about three “five hours average. We email each other every day on issues of concern to the public. In addition to our regular COPR meeting, we have gone to NIH for budget meetings with all the institute directors, government assessment meetings (GRPA), special committees formed on current issues (clinical trials safety, terrorism, HHS issues, hormone replacement therapy, breast cancer clustering, etc). We have made presentations and attended almost every institute's advisory council. We have participated in employee reviews of the institute directors where we have interviewed over 65 people, including the institute director and his/her immediate employees at the NIH. A commitment as a COPR member requires a great deal of volunteer time and most members have been willing to spend that time. These volunteer travel hours are not included in my average above.

In addition to the above-mentioned items, we have work groups working on specific topics. Many people in the different areas of government and the public are addressing many of these topics. COPR has approached these topics as to how we can bring a unique public view to the table that is not being addressed by other groups in the process.

Our first report of significance was on Human Protections in Clinical Trials that was presented to the NIH Director. We had a response from the Director to that report in our last meeting. Both the reports and the response can be viewed on the NIH COPR website.

We submitted a report to the NIH Director on the Organizational Structure and Management of the NIH dated December 2, 2002. The Director sent this report onto the Insitute of Medicine as COPR's public perspective report into the current study conducted by the IOM. That is available on the COPR website.

We now have working groups addressing health disparities and NIH research priorities from a truly public perspective.

In addition to these activities, many COPR members have directly involved their communities in NIH activities from town meetings to visits to the local universities and K-12 schools. These are too numerous to mention here, but can be found on the COPR website. COPR is still addressing how NIH can better communicate its work to the public and how COPR can better facilitate that communication.

The public should feel confident that this new council has finally given a direct public view and input into the important workings of the NIH. I feel, as well as my colleagues on the council, that we have served a significant role in establishing this council to remain for years to come as the truly public voice at the NIH. The last eight original appointees rotated off the council March 30, 2003 after serving four years. We, as COPR alumni, will continue to be involved and be asked to serve on ongoing committees of COPR and other NIH committees as the need arises."

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