The National Institutes of Health (NIH) has a long tradition of working with and for the public. As the NIH grew over the years, each Institute and Center initiated activities for their respective interested 'publics.' For the NIH, the "PUBLIC" are many different groups of people. Some are scientists and investigators around the country who compete for NIH funding to support their research. Others are patients with various diseases or health conditions, and advocacy groups for persons with specific conditions, on which the different NIH Institutes and Centers focus — such as cancer, diabetes, heart and lung disorders, and arthritis. Still others are health practitioners -- physicians, nurses, dentists, and a myriad of other health professionals — who are interested in the latest research and discoveries that might be used in their practice.
As a public agency supported by taxpayer money, the public at large also constitute a group to which the NIH is accountable. There are special groups of the public, such as those in locations who are underserved with respect to health services, and those in racial, ethnic, or cultural groups who have special needs or are similarly underserved or inadequately served regardless of geographic location. As we discover important differences in responsiveness to health care services and treatments and in risks for certain diseases or adverse health outcomes, the NIH has a special commitment to these groups.
With all these "publics" in mind, there is a substantial amount of activity directed at informing, educating, and receiving input from these publics, and at involving the public in various aspects of NIH business. For example, every institute has an Advisory Council, formally appointed by the Secretary of the Department of Health and Human Services. Two-thirds of the membership of each Advisory Council is drawn from among leading representatives of the health and scientific disciplines relevant for the particular Institute or Center, and one-third are drawn from the general public and include leaders in the fields of public policy, law, health policy, economics and management. These Advisory Councils provide the second level of review of grant applications, after a scientific, peer-review by the Initial Review Group (IRG), and recommend to the Institute Directors which applications should be approved and considered for funding. Recommendations from Advisory Councils are based not only on considerations of scientific merit, as judged by the IRGs, but also on the relevance of the proposed project to Institutes' programs and priorities.
In addition to the general Advisory Council to the Director, which includes public members, the Director of the NIH also has a Council of Public Representatives (COPR) that advises the NIH Director specifically on issues related to public participation in NIH activities, outreach efforts, and other matters of public interest. New COPR members are selected every year, to serve an average of 3-year terms. See the website: http://copr.nih.gov/ for more information on COPR.
There are many other ways in which the public may work with the NIH and the individual Institutes. There are opportunities to learn more about how the NIH operates, to learn about programs sponsored by the NIH of interest to the public, and to learn about how one can get involved with the NIH and the research it conducts and supports. For more information on these opportunities, see the following website: http://getinvolved.nih.gov/.
When Dr. Elias Zerhouni, the current director of the NIH, first launched the NIH Public Trust Initiative in partnership with the NIH Roadmap for Research, we undertook an effort to inventory activities that the NIH and its individual Institutes and Centers already are doing that involve our various "publics," and that are intended to inform, educate, hear from, and serve the public. We found a wealth of information and programs and projects. Many of these are readily available through the sponsoring institutes and centers and their respective websites. We wanted to make these even more easily accessible by establishing this Public Trust website to facilitate easy linkages and navigation for our visitors.
Across the NIH our Institutes and Centers are engaged in specific activities aimed at education about clinical research on health issues and at involving and protecting people who participate in these important clinical studies. A commitment to the health and safety of all people who volunteer to participate in research is paramount in all these activities. Many of these activities involve partnerships with specific groups and communities. There are conferences, workshops, informational brochures, videos and web programs. Many of the larger clinical studies supported by funds from NIH formally include a specific coalition or advisory board of community members from the community in which the study is occurring or to represent the community of people being studied in that particular study.
For example, the NIH has a Patient Recruitment and Clinical Research Volunteer Office that assists NIH investigators with recruiting patients and healthy volunteers to their studies. This office also operates a call center where staff provides study information, conducts preliminary screening and refers study candidates to the Institutes that are conducting studies of interest. Recruitment staff also conducts general community education intended to increase understanding and awareness of the clinical research process and to improve participation in the NIH intramural clinical trials. Print materials in English and Spanish and a video, "Clinical Trials: Why Participate" were developed to assist with these efforts.
There also are numerous activities across the NIH from the Institutes and Centers that are specifically aimed at promoting the visibility of the NIH information for the public. These include newsletters, public education campaigns, traveling exhibits, sponsored health fairs, collaborations with museums, material on websites, and free phone numbers to call for information. Information about these efforts is available through the individual institute websites and through the "Get Involved" website, http://getinvolved.nih.gov/.
Two other areas of extensive activity involving the public are efforts to provide science education and science career information both generally and formally through or in partnership with elementary, middle, high school, and post-secondary educational institutions; NIH's Office of Science Education has developed curricula for use by teachers (see http://science.education.nih.gov). In addition, NIH offers educational and outreach programs aimed at the larger scientific and clinical communities both within and outside of the NIH. There are 'how to' courses, web courses, intensive summer programs, and other vehicles for helping scientists be better researchers and clinicians be better practitioners as they learn about and use the latest findings from the best research available.
We hope this introduction helps you understand more about what the NIH has to offer and how you can "get involved" if you wish. In the future, we will add more information to this site, and links to other sites of particular interest. In particular, we plan to showcase different examples of the exciting and informative work the NIH is doing for you, our public. Be sure to bookmark this, the NIH Public Trust website: http://publictrust.nih.gov/, as one of your favorites!