[Federal Register Volume 74, Number 183 (Wednesday, September 23, 2009)]
[Notices]
[Pages 48578-48580]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: E9-22972]


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DEPARTMENT OF HEALTH AND HUMAN SERVICES

National Institutes of Health


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 Health Information Interests and 
Behaviors for Seeking and Using Health Information

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

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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 
[email protected].
    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

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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 
([email protected]) Office of Communications and Public 
Liaison, National Institutes of Health, 1 Center Drive, Room 344, 
Bethesda, MD 20892-0188, phone (301) 496-5787.
    For questions about personal medical or health issues, please send 
a separate e-mail to [email protected] 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

[[Page 48580]]

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. 
[email protected].

    Dated: September 17, 2009.
Kelli L. Carrington,
Executive Secretary/Public Liaison Officer, Office of Communications 
and Public Liaison.
[FR Doc. E9-22972 Filed 9-22-09; 8:45 am]
BILLING CODE 4140-01-P