E9-22972. Council of Public Representatives (COPR, http://copr.nih.gov/) and the Office of Communications and Public Liaison (OCPL), Office of the Director, NIH (http://www.nih.gov/icd/od/ocpl/index.html); Request for Information (RFI) on Consumer ...

ACTION:

Request for Information (RFI) on Consumer Health Information Interests and Behaviors for Seeking and Using Health Information.

DATES:

Response Date: December 30, 2009.

Introduction: Request for Information

January 21, 2009, President Obama issued a directive to all Federal agencies calling for greater transparency, public participation, and collaboration.

In response to this Directive, and in keeping with the work that has already been done by the National Institutes of Health (NIH) to encourage public input and provide science-based health resources and science information to the public, NIH posts this Request for Information (RFI) to offer a new public input opportunity. The RFI will provide insight and better understanding of the health information needs and information-seeking behaviors of NIH health consumer audiences. Information gathered will assist the agency in developing and disseminating health, medical, and scientific information to a broader variety of audiences. The agency anticipates using new outreach strategies and tools, from community-level outlets to Internet-based social media. Members of the public as well as organizations are invited and encouraged to participate in this public input opportunity.

The RFI is a collaborative effort between the NIH Office of Communications and Public Liaison (OCPL) and the NIH Director's Council of Public Representatives (COPR). COPR is a Federal Advisory Committee covered by the Federal Advisory Committee Act (5 U.S.C. Appendix 2). The COPR is composed of up to 21 members of the public who provide the public's perspective into the NIH research priority-setting process as well as the Agency's public health education and public engagement efforts.

NIH is part of the U.S. Department of Health and Human Services and is the primary Federal agency for conducting and supporting biomedical and behavioral research. NIH is the steward of medical and behavioral research for the Nation. Composed of 27 Institutes and Centers, the NIH provides leadership and financial support to researchers in more than 3,000 institutions in all 50 States, the territories and in more than 90 countries around the world. Its mission is science in pursuit of fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to extend healthy life and reduce the burdens of illness and disability.

NIH also has a responsibility to communicate science-based, trustworthy public health and science information to a wide range of audiences, including the public at large, patients, family members, health care providers, scientists, public health workers, nonprofit health organizations, and professional societies. These audiences have differing needs for the information available from the NIH. Building on its previous experience and record of success, NIH recognizes the need to communicate cutting-edge research advances to ensure continued improved health for all Americans in a changing media and information environment. For background information on the RFI, please visit this Web site http://nihhealthinfoRFI.nih.gov.

Information Requested

The Request for Information (RFI) serves as a vehicle to obtain public comments on how NIH can best address communication challenges and requirements for the 21st century in the face of increased demands and shrinking resources.

The purpose of the RFI is to obtain information aimed at helping the NIH strengthen short- and long-term communications strategies while identifying cost-effective, meritorious, innovative, and legally sanctioned methods and outlets for disseminating health information to the public. Specifically, the RFI seeks information on the following:

• The current state and range of health information-seeking behaviors and trends;
• The range of health information of interest to the public;
• How the public accesses and uses health information; and
• The barriers that might impede NIH's ability to communicate with health consumers.

Submitting Responses

Responses will be accepted through December 30, 2009. Please limit responses to the maximum number of words indicated for each response.

Responses may be submitted on the Web, by e-mail or by postal mail. See below for instructions.

1. Visit the Consumer Health Information Request for Information Web Site at http://nihhealthinfoRFI.nih.gov to submit responses on the Web or to download the response sheet to submit by e-mail or mail.

2. Complete the RFI questions attached in typed or written format. Responders should complete either the Requested Response for Health Consumers or the Requested Response for Organizations and Health Care Providers.

3. E-mail typed responses to this address [e-mail].

4. Mail typed or handwritten responses to Kelli Carrington or Marin Allen, Ph.D., Office of Communications and Public Liaison, National Institutes of Health, 1 Center Drive, Room 344, Bethesda, MD 20892-0188.

Privacy Act Notification Statement

Collection of this information is authorized under 5 U.S.C. 301; 44 U.S.C. 3101. The primary use of this information is to obtain information from the public aimed at helping the National Institutes of Health strengthen short- and long-term communications strategies while identifying cost-effective, meritorious, innovative, and legally sanctioned methods and outlets for disseminating health information to the public. Upon completion of the Request for Information activities, the NIH Director's Council of Public Representatives (COPR) will produce a final report with recommendations to the NIH Director, which will be available to the public and posted at this Web site http://copr.nih.gov/​reports.asp. Submission of this information is voluntary, however, in order for us to consider your comments, you should complete all fields.

Inspection of Public Comments: All comments received before the close of the comment period are available for viewing by the public, including any personally identifiable or confidential business information that is included in a comment.

Acknowledgement of receipt of written responses will not be made. Responses submitted electronically will receive notice of submission directly following data entry.

The RFI is for information and planning purposes only and should not be construed as a solicitation or as an obligation on the part of the Government. By providing comments you are consenting to their consideration and use by the NIH.

The Government does not intend to award a grant or contract on the basis of the responses to this RFI nor pay for the preparation of any information submitted or for the Government's use of such information.

No basis for claims against the Government shall arise as a result of a response to this Request for Information or the Government's use of such information as either part of our evaluation process or in developing specifications for any subsequent announcement.

Inquiries

For questions about the RFI, please use the following contact information: Kelli Carrington or Dr. Marin Allen ([e-mail]) Office of Communications and Public Liaison, National Institutes of Health, 1 Center Drive, Room 344, Bethesda, MD 20892-0188, phone [phone].

For questions about personal medical or health issues, please send a separate e-mail to [e-mail] or call 301-496-4000. Medical and health questions included in the RFI response can not receive a response due to Federal Privacy Act compliance.

We are grateful for your time and effort on behalf of improving our delivery of health and science information.

Requested Response for Health Consumers (19 Questions)

Demographic Information

1. Describe the city and State you represent.

2. Indicate what kind of community you live in (for example, rural, urban, or suburban).

3. Indicate your gender.

4. Describe your racial/ethnic background (for example American Indian or Alaska Native, Asian, Black or African American, Native Hawaiian or Other Pacific Islander, White, and Other; ethnicity: Hispanic or Latino, not Hispanic or Latino).

5. Indicate your highest level of education (for example, less than high school, high school graduate or GED, some college or associate's degree, or bachelor's, master's or post-graduate degree such as PhD, MD, JD).

6. Indicate which age range you seek health information for the most (for example 18-29, 30-39, 40-49, 50-59, 60-69, 70 or older).

7. Indicate your income range (for example: $0-4,999, $5,000-9,999, $10,000-14,999, $15,000-19,999, $20,000-29,999, $30,000-39,999, $40,000-49,999, $50,000-69,999, $70,000-89,999, $90,000-$119,999, $120,000 and over).

8. Indicate your primary role (for example health consumer, parent, family caregiver, student, teacher, member nonprofit health-related organization, etc.). [Please use 10 words or less.]

Health Information

NIH produces a large amount of health materials and resources on a wide variety of health topics for audiences that include patients, family members and caregivers, medical, health and policy professionals, legislatures, and media professionals. Your responses to the questions below will help NIH better understand what new topics health consumers seek and better tailor the information we disseminate.

1. Please describe the health topic(s) that are currently important to you, your family members and/or friends (for example information on diseases, prevention, diagnosis, treatment, and health for women, men, teens, children, etc.). [Please use 50 words or less.]

2. List the language(s) that you would request health information for yourself, your family members and/or friends. [Please use 20 words or less.]

Health Information Sources

NIH disseminates research advances to improve health and quality of life for all. Your responses to the questions below will help fulfill our mission to serve as a primary source of health information for consumers we may not be reaching and using sources ranging from community locations, to national organizations to new Internet sources such as online forums, blogs, podcasts, social network sites, wikis and other social media.

1. Describe how you found the most recent health information you were looking for (for example what you were looking for, what steps did you take to find the information, what information did you find most useful, and what sources were most helpful and least helpful). [Please use 200 words or less.]

2. Describe how you would find health information for a friend or family member who was recently diagnosed with a health problem (for example cancer, heart disease, HIV/AIDS, arthritis, Alzheimer's, glaucoma). Identify what you would be looking for, what steps would you take to find the information, what information would you find most useful, and what sources would you think would be most helpful and least helpful). [Please use 200 words or less.]

3. Describe the best places you go to in your community for health information for you, your family, friends and neighbors (for example local organizations, community newspapers, clinics, community or health care centers, grocery stores, pharmacies, other retail outlets, places of worship, barber shops, beauty salons, etc.). [Please use 200 words or less.]

4. List the types of Internet resources you use to get health information and which are the most helpful (for example, online forums, blogs, podcasts, social network sites, wikis). Indicate why you use these sites (for example to get information, to participate in discussion, to pose questions, to post comments, etc.) [Please use 200 words or less.]

5. List ideas you have for NIH to distribute health information to specific audiences in your community and indicate which audiences and what language(s). [Please use 200 words or less.]

NIH Awareness and Role in Health Communications

NIH has a responsibility to communicate science-based, trustworthy public health and science information to a wide range of audiences, including the public at large, patients, family members, health care providers, scientists, public health workers, nonprofit health organizations, and professional societies. Your responses to the following questions will help us understand how familiar health consumers are with the agency's efforts to provide health information.

1. Describe how important the source or place where you get health information is to you (for example, very important, important, not important). [Please use 20 words or less.]

2. Describe how you decide whether the health information you receive is trustworthy or believable. [Please use 100 words or less.]

3. Indicate whether you have ever requested health information from the NIH and describe your experience, including the type(s) of information you requested and how you received it (for example Web site, clearinghouse, health fair). Also describe how frequently you request information from NIH and when was the most recent time (for example 6 months, 12 months, 2 years. [Please use 100 words or less.]

Open Response on Health Information

1. Describe any additional information you would like NIH to know about health information and/or health information resources. [Please use 300 words or less.]

Requested Responses for Organizations and Health Care Providers (10 Questions)

General Information

1. Describe your organization's reach (for example, local, regional, national). [Please use 100 words or less.]

2. Indicate your primary role (for example leader of nonprofit health-related organization, clinician, physician, nurse, clinic or hospital staff, other allied health professional, professional caregiver, etc.). [Please use 10 words or less.]

3. Describe the services your organization or practice provides to its members/patients, including how you communicate with them. [Please use 200 words or less.]

4. Indicate the languages your members/patients seek health information. [Please use 20 words or less.]

Health Information

NIH produces a large number of health, medical, and science education materials and resources on a wide variety of health topics for audiences that include patients, family members and caregivers, medical, health and policy professionals, legislatures, and media professionals. Your response to the question below will help NIH better understand what new topics health consumers seek and better tailor the information we disseminate.

1. Please describe the health topics that are currently important to your members/patients (for example information on diseases, prevention, diagnosis, treatment, and health for women, men, teens, children, etc.) Identify what language(s) the topics are requested. [Please use 100 words or less.]

Health Information Sources

NIH disseminates research advances to improve health and quality of life for all. Your responses to the questions below will help fulfill our mission to serve as a primary source of health information for consumers we may not be reaching and using sources ranging from community locations, to national organizations to new Internet sources such as online forums, blogs, podcasts, social network sites, wikis and other social media.

1. Indicate how you think NIH should use the new Internet sources to send health information to your members/patients and describe the cases when NIH should use these sources (for example, online forums, blogs, podcasts, social network sites, wikis). [Please use 200 words or less.]

2. List ideas you have for NIH to distribute health information to specific audiences and indicate which audiences and how to reach them (for example local, regional, or national channels, print, online, in-person events). [Please use 200 words or less.]

NIH Awareness and Role in Health Communications

NIH has a responsibility to communicate science-based, trustworthy public health and science information to a wide range of audiences, including the public at large, patients, family members, health care providers, scientists, public health workers, nonprofit health organizations, and professional societies. Your responses to the following questions will help us assess how familiar our audiences are with the agency's efforts to provide health information.

1. Please describe your organization's or practice's understanding of the NIH's role in (a) disseminating health information and (b) meeting the health information needs of the public. [Please use 200 words or less.]

2. Please describe how NIH can better communicate results of Federally-funded biomedical and behavioral research initiatives for maximum impact on the nation's health, both within your organization or practice and directly to the wider public. [Please use 200 words or less.]

Open Response on Health Information

1. Describe any additional information you would like NIH to know about health information and/or health information resources. [Please use 300 words or less.]

Contact Person: Kelli L. Carrington, MA, Executive Secretary/Public Liaison Officer, Office of Communications and Public Liaison, Office of the Director, National Institutes of Health, 9000 Rockville Pike, Building 1, Room 344, Bethesda, MD 20892. 301-594-4575. [e-mail].

Dated: September 17, 2009.

Kelli L. Carrington,

Executive Secretary/Public Liaison Officer, Office of Communications and Public Liaison.