January 2006

Grant Results

SUMMARY

A lack of disease and heightened media attention to real and alleged side effects of vaccines lead some people to believe that the risks of childhood immunizations outweigh the benefits. By 1998, more than 10 states had introduced measures to expand exemptions to state vaccination mandates.

Beginning in 1999, the National Network for Immunization Information (NNii), an affiliate of the Infectious Diseases Society of America, developed an education campaign providing scientifically sound information about immunization to help parents, health care professionals and policy-makers make informed decisions about childhood immunizations and to help the media represent the topic accurately. Porter Novelli, a Washington-based public relations and social marketing firm, under a subcontract, conducted research to help develop the campaign and assisted NNii staff as needed.

Key Results
At the end of the grant period in August 2003:

  • The number of families refusing vaccines remained small, and state laws on immunization remained unchanged.
  • NNii staff had developed and distributed 28,000 copies of Communicating with Patients about Immunization, a resource kit written by experts to help health care professionals address parents' and patients' questions about immunizations during an office visit.
  • NNii's Web site, which provides access to comprehensive, scientifically sound information about immunization, received an average of more than 13,000 visits per month.

Funding
The Robert Wood Johnson Foundation (RWJF) partially funded this unsolicited project from February 1999 through August 2003 with a total of $4,799,584 in four grants to the Infectious Diseases Society of America for NNii to develop and run the education campaign.

 See Grant Detail & Contact Information
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THE PROBLEM

Childhood immunization is one of the last century's greatest public health achievements, preventing the suffering and death of thousands of children from diseases such as polio, measles, diphtheria and smallpox. Yet, in the late 1990s, two developments have led some people to believe that vaccines may no longer be necessary or that the risks outweigh the benefits:

  • Diseases that once inspired fear in families and communities, such as measles and polio, have largely been eliminated in the United States due to high rates of childhood immunizations.
  • Increased focus on the real and perceived side effects of the vaccines themselves. By the late 1990s, anti-immunization groups had won a disproportionate share of media "voice." Some used sensational stories to publicize exaggerated information on the potential danger of vaccines to children, with no scientifically based evidence to support their claims. Web sites echoed these ideas. In 1998, "20/20" prepared and "ABC World News Tonight" broadcast such stories; and articles in Science and the New Republic described a growing anti-vaccination movement. David Salisbury, head of the UK Health Department's immunization program, summarized the problem: "If parents have fear of disease but no fear of vaccines, the argument in favor of vaccination is clear-cut…. When they have no fear of disease, but fear of vaccines, parents are likely to refuse immunization."

Those opposed to universal immunization of children focused their efforts within certain states to repeal legislation that mandates immunization for entry into school or daycare. State legislatures and the U.S. Congress held an unexpected number of hearings on this issue in 1998, the Infectious Diseases Society of America reports. More than 10 states introduced measures to expand exemptions to vaccine mandates. At that time, the medical community was not organized to provide legislators with the knowledge to make informed decisions about immunization.

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RWJF STRATEGY

RWJF had been involved with the issue of ensuring that all children receive their immunizations, through a national program, All Kids Count: Establishing Immunization Monitoring and Follow-Up Systems. The program, which ran from 1991 to 2001, supported the development and implementation of monitoring and follow-up systems to improve and sustain access to immunizations for preschool children. See the Grant Results on the program.

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THE PROJECT

To ensure that children continue to be immunized, three professional organizations, the Infectious Diseases Society of America (Alexandria, Va.), the Pediatric Infectious Diseases Society (Alexandria, Va.) and the American Academy of Pediatrics (Elk Grove, Ill.), began a cooperative project in 1998 called the Vaccine Initiative, now renamed the National Network for Immunization Information (NNii).

The director, Bruce Gellin, M.D., M.P.H., of the Vanderbilt University School of Medicine (Nashville, Tenn.), proposed a communications campaign to establish NNii as a clearinghouse for reliable information on immunization, a source for expert advice on immunization for public policy and an independent watchdog for media accuracy on immunization.

RWJF provided four grants running from February 1999 through August 2003 (ID#s 035252, 036607, 038351 and 044378). NNii contracted with Porter Novelli, a public relations and social marketing firm in Washington to conduct research to develop the campaign and assist with campaign design and implementation. Louis Sullivan, M.D., (former secretary of the U.S. Department of Health and Human Services) and Samuel Katz, M.D., (pediatrics chairman emeritus, Duke University School of Medicine, Durham, N.C.) co-chaired the NNii steering committee (see Appendix 1 for a committee roster).

NNii sought to accomplish four goals by developing and spreading reliable information about vaccines and immunization through an education campaign:

  1. Help health care professionals communicate easily and effectively with patients and parents about immunization.
  2. Improve media coverage of vaccine and immunization issues.
  3. Improve legislative deliberations on immunization.
  4. Build and maintain a network of organizations and individuals that share NNii's commitment to disseminate reliable information on immunization.

Under the first two grants (ID#s 035252 and 036607), NNii and Porter Novelli staffs conducted audience research, completed the campaign design, developed informational materials and began outreach activities.

Research

To discover how people think and act regarding immunization, Porter Novelli conducted separate focus groups of parents and physicians, a survey of legislative staff and a national survey of parents. (For more on this research, see Appendix 2. Findings from the parent survey appear in Findings.)

Project staff used research results to formulate campaign tactics and messages. For example, parents named health care providers as their most trusted source for immunization information, and physicians said they needed help to communicate effectively with their patients about immunization.

Since research identified health professionals as the best channel to reach parents, NNii staff designed an informational resource kit to support their efforts to educate patients during office visits.

The Campaign

To establish a wider reach among health professionals, build a network for dissemination and gather resources to achieve campaign goals, NNii approached some 60 professional societies and nonprofit organizations that Porter Novelli targeted as potential "partner organizations." It was able to establish partnerships with seven of them. (See Appendix 3 for a brief description of each partner organization.)

Although Gellin of NNii had earmarked the first grant for planning, he quickly recognized that the growing controversy over immunization in the media, state legislatures and Congress demanded a broader range of activities. RWJF approved his plan to reallocate funds for "strategic crisis communication" — immediate response from NNii to key audience members (such as journalists or legislators) to correct misconceptions about immunization publicized by the media, or to give them access to immunization experts.

State-Level Activities. Gellin also proposed to set up "state immunization information teams" to assess local conditions and intervene with local legislators and media. RWJF awarded a supplementary grant (ID# 036607) that allowed project staff to finish and test the resource kit for health professionals; launch and publicize the project, its Web site and its resource kit; and organize information teams in targeted states.

In 2000, NNii staff and consultants conducted three workshops to train state immunization information teams, with representatives from 12 states with active or anticipated challenges to their immunization mandates. Because NNii has no state-level infrastructure, its partner organizations with local chapters helped to put together networks of health care professionals in individual states.

Two issues compelled project staff to abandon this approach in the states in April 2001. The day-to-day demands on health care providers prevented them from becoming a self-starting team of advocates. Training alone is not sufficient; they need a clear plan, regular management and consistent support. Without dedicated funding to provide this support, state teams remained inactive. Instead, the NNii steering committee decided to shift the focus to work with partner organizations to identify needs, expectations and opportunities to share NNii's messages and resources with their members across the country. This approach did bear some fruit. See the Results section — Building and maintaining a network for immunization information.

Accelerating the Campaign. With the third and fourth grants from 2000 to 2003 (ID#s 038351 and 044378), NNii implemented, adjusted and accelerated the campaign while trying to find sustainable funding. NNii staff continued to monitor and counteract vaccine misinformation when the media reported it.

They set up an "early warning system" to alert health professionals and others to vaccine-related developments in the media, and to make accurate information about the topic under discussion readily available. Project staff distributed the resource kit to health professionals, developed new materials and added more resources to the project Web site.

In 2001, NNii hired Burness Communications to promote www.immunizationinfo.org to search engines, other Web sites, listservs and "site of the day" forums and train NNii staff to market the Web site. Porter Novelli conducted a usability study of the Web site to improve its function.

The campaign also ramped up outreach activities to establish NNii as a credible, science-based resource for reporters and legislators. Project staff held editorial briefings in major news centers across the country and set up a speakers bureau to give ready access to immunization experts. Gellin and Katz submitted statements for Congressional committees debating immunization or specific vaccines. Gellin talked about NNii and its resources in many types of forums, from meetings of government health agencies to local Rotary clubs. (See the Communications section for more on presentations.

Sustaining NNii

In 2002, NNii staff obtained limited funding from the Children's Vaccine Program at PATH (the Program for Appropriate Technology in Health, an international nonprofit organization), but could not secure ongoing funding. Several foundations expressed regret that, given the economic conditions in 2002, they could not promise resources to NNii. RWJF's fourth and final grant (ID# 044378) supported NNii's core operations and some consulting activities.

In 2002, NNii contracted DCA®, a Boston-based management consulting firm, to identify new and appropriate sources of funding. Gellin left NNii that September to become director of the National Vaccine Program Office at the Department of Health and Human Services. A steering committee member, Louis Z. Cooper, M.D., served as interim director. NNii did not obtain long-term funding, and without it could not hire a new director. The Infectious Diseases Society covered the budgetary shortfall in 2003. That September, NNii moved to a new organizational home in Galveston. (For details, see After the Grant.)

Six organizations provided additional funding, including the Children's Vaccine Program at PATH ($100,000) and the Infectious Diseases Society of America ($85,000). (See Appendix 4 for a list of all funders.) To build and preserve its credibility as an independent source of reliable information, NNii did not accept funding from industry or government after the first award from RWJF.

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FINDINGS

NNii staff described results from a national survey of parents in "Do Parents Understand Immunizations? A National Telephone Survey," published in the November 2000 issue of Pediatrics (see the Bibliography for details). Based on telephone interviews with a nationally representative sample of 1,600 parents with a child younger than six or expectant parents conducted in April and May of 1999, the authors report that:

  • "Eighty-seven percent of respondents deemed immunization an extremely important action that parents can take to keep their children well.
  • Although respondents' overall rating of immunization safety was high, a substantial minority held important misconceptions. For example, 25 percent believed that their child's immune system could become weakened as a result of too many immunizations, and 23 percent believed that children get more immunizations than are good for them.
  • Children's health care providers were cited as the most important source of information on immunizations."

Limitations

  • The researchers conducted interviews only in English by telephone. Non-English speaking parents and those without telephones may not share the opinions of those surveyed.
  • The survey may underestimate the level of concern about vaccines among parents because it occurred a few months before the vaccine for rotavirus (an intestinal virus that affects most children under three) was suspended due to a suspected adverse outcome, and before the CDC reassessed the use of vaccines containing thimerosal, a preservative containing mercury, for infants.
  • Investigators cautioned that the 41 percent response rate for the survey, though conservatively calculated and comparable to response rates for similar surveys in 1999, could have biased their findings.

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CONCLUSIONS

Investigators offered the following conclusion in the Pediatrics article:

  • "Although the majority of parents understand the benefits of immunization and support its use, many parents have important misconceptions that could erode their confidence in vaccines. A systematic educational effort addressing common misconceptions is needed to ensure informed immunization decision-making. Physicians, nurses, and other providers of primary care have a unique opportunity to educate parents because parents see them as the most important source of information about immunizations."

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RESULTS

The key results for each of NNii's goals are:

Public Policy

  • At the end of the grant in period in 2003, the number of families refusing vaccines remained small and state laws on immunization remained unchanged. The grantee reports that in contrast to the situation in other countries (e.g., United Kingdom, Ireland and Japan), the United States has not seen significant erosion in the control of vaccine-preventable diseases. Although isolated pockets of "vaccine refusal" exist, the numbers of families involved remain relatively small. State-based immunization statutes and regulations have not been dismantled.

Resources for Health Care Professionals

  • NNii staff developed, tested and distributed Communicating with Patients about Immunization, a resource kit written by immunization experts and risk-communication specialists to help health care professionals address parents' and patients' questions about immunizations during an office visit. Kits include science-based materials in clear language that address parents' key anxieties about immunization — for instance that multiple vaccinations may compromise a child's immune system. It includes fact sheets with questions and answers for each recommended vaccine, an overview of how vaccines are approved for use and monitored for safety and a guide to Internet and hotline resources for more information. Providers can reproduce each sheet to be used as a handout. Users can sign up for e-mail or fax updates. (See Communications for information on how to obtain the kit.)

Media Coverage

  • NNii developed a "strategic counsel and crisis communication" protocol to respond to media challenges to vaccine safety. The network receives notice of media opportunities from its partners, from others in the immunization community and from its public relations agency. Project staff quickly reached out to the organization or media staff involved. For example, Gellin submitted a written statement to the U.S. Congress House Committee on Government Reform's hearing on autism, and Katz provided expert testimony on immunization. Project staff also worked with news media producers to offer vaccine experts for television and radio news on vaccine safety. (See Communications for more about media coverage.)

Building and Maintaining a Network for Immunization Information

  • NNii developed partnerships with medically related professional organizations to enlarge their network. Beginning in 2000, they established a formal partnership with the American Nurses Association, and later, with the American Academy of Family Physicians, the American Academy of Pediatrics, the National Association of Pediatric Nurse Practitioners and four others. This enabled NNii to engage health care professionals in individual states to address challenges to state legislation, and increase the number of voices advocating for the use of science-based information for decisions about immunization. (See Appendix 3 for a brief description of each partner organization.)
  • On an as-needed basis, project staff brought together interested leaders from medicine, nursing, public health and pharmacology in states with active challenges to universal immunization. These groups became knowledgeable about how to advocate for immunization and became acquainted with each other, so that each reinforced the local immunization group's goals.
  • NNii helped to found the Allied Vaccine Group, an alliance of nonprofit organizations that provides scientifically valid immunization information on the Internet. The group's Web portal enables users to search for immunization information on all the member organizations' Web sites at once, in English or nine other languages. Group members include: the American Academy of Pediatrics, the Children's Vaccine Program at PATH, the Immunization Action Coalition, Parents of Kids with Infectious Diseases, the National Network for Immunization Information, the Vaccine Education Center at the Children's Hospital of Philadelphia and the Vaccine Page (daily news on vaccines and a database of links to vaccine information).

Information Resources

  • NNii launched a Web site, which provides comprehensive, scientifically sound information about immunization. It includes information on various vaccines and the diseases they prevent, frequently asked questions about vaccine safety and a guide to Internet sources of immunization information. It offers state-by-state vaccine requirements, tips on how to evaluate information on the Web, recent vaccine news and current and past Immunization Newsbriefs. Users can download NNii's resource kit, Communicating with Patients About Immunization, in its entirety. By 2003, the site included 8,000 articles.
  • NNii contracted with Information Inc. to develop Immunization Newsbriefs, an e-mail broadcast of hot topics and developments in vaccines sent three times a week. Newsbriefs reviews more than 1,400 media sources and abstracts the information to provide a concise summary of vaccine topics in the news, keeping subscribers abreast of what patients may be reading. Subscribers can reprint and re-use these news summaries. Current issues of Newsbriefs and a searchable archive of back issues appear on the network's Web site.
  • NNii staff published articles in peer-reviewed journals:
    • In November 2000, Pediatrics published "Do Parents Understand Immunizations? A National Survey." This article reported findings from NNii's survey of 1,600 parents on immunization. The release of this article led to discussions with the CDC; national immunization programs in Great Britain, Canada and Australia; the Pan American Health Organization and the World Health Organization. NNii provided the study protocol and survey instrument to these organizations and other groups that expressed an interest in conducting similar survey work. (See Findings and Bibliography for additional information.)
    • Pediatrics published "Addressing Parents' Concern: Do Multiple Vaccines Overwhelm or Weaken the Infant's Immune System?" by Offit et al., in January 2002. (See Bibliography for details.) For this article, NNii representatives collaborated with members of the National Institutes of Health and others to review the literature on how vaccinations affect the child's immune system.
    • Findings from NNii's research led to an Institute of Medicine report. NNii's finding that 25 percent of parents surveyed believed that vaccines could 'weaken' a child's immune system — spurred the Institute of Medicine's Vaccine Safety Review Committee to review an associated topic, multiple immunizations and immune dysfunction, which the Institute of Medicine published as a report in February 2002.
    • NNii staff and Steering Committee members, sometimes with other researchers, produced other articles and editorials about immunization and vaccine safety, which were published by journals such as the New England Journal of Medicine. "The Risk of Vaccination — The Importance of 'Negative' Studies," "Measles-Mumps-Rubella Vaccine and Autism: The Rise (and Fall?) of a Hypothesis" and "Challenges to Vaccine Safety" all appeared in medical journals in 2001. "Nurses' Perceptions and Intentions Regarding Smallpox Vaccine: A National Survey" appeared in 2003. (See the Bibliography for details.)

Communications

Partner organizations and project staff formally launched the National Network for Immunization Information (NNii) at the annual meeting of the American Academy of Pediatrics in Chicago on October 30, 2000. Gellin presented findings from "Do Parents Understand Immunizations? A National Survey" at the meeting, which Pediatrics published in November (available online).

NNii simultaneously introduced its Web site and unveiled a new resource for health professionals, Communicating With Patients About Immunization: A Resource Kit from The National Network for Immunization Information. To publicize this launch, representatives from NNii held two press briefings and issued both print and video news releases.

Project staff report that national and local coverage reached an estimated audience of 50 million. Print outlets included the Associated Press and USA Today. Some 40 television stations used NNii's video news release 82 times. (See Bibliography for details about publications and media coverage described in this section.)

Print Media
Prior to the launch, the New Yorker magazine introduced readers to NNii's work in a 1999 "Talk of the Town" column. Major print news outlets such as the Associated Press, Reuters, United Press International, and HealthScout also carried stories about this project. A wide range of magazines (e.g., Consumer Reports, Science News, Better Homes and Gardens, Self and Newsweek) and national newspapers (e.g., Wall Street Journal, Los Angeles Times, Boston Globe and Washington Post) described NNii's resources or its perspectives in articles on vaccine misconceptions, the shortage of vaccines, vaccine risk/benefit analysis and other topics.

Broadcast Media
Journalists and producers increasingly asked members of the network to comment on immunization-related issues. A 1999 "60 Minutes" segment about vaccines and autism featured NNii steering committee co-chair Katz. Former DHHS secretary and co-chair Sullivan, appeared on CNN's "Larry King Live" in March 2001.

In "Following ER," a spot that local news programs broadcast right after selected episodes of the popular television series "ER," Katz talked about the immunization concepts the episode introduced and explained the importance of vaccinations. This spot aired 38 times in 25 NBC markets on February 15, 2001.

On a National Public Radio broadcast of "Public Interest," Gellin was among the guests discussing vaccine shortages. From April 2002 through August 2003, the NNii received more than 70 inquiries from journalists covering immunization stories on subjects like pertussis outbreaks, the nasal influenza vaccine and vaccine safety.

Policy Meetings and Presentations
NNii representatives were called upon to participate in national immunization policy meetings and many conferences. Gellin and Katz provided statements to Congressional hearings on the hepatitis B vaccine and on balancing public health and personal choice in immunization policy.

At least one member of NNii's steering committee regularly participated in national immunization policy meetings of the CDC Advisory Committee on Immunization Practices, the CDC Vaccine Risk Communication Working Group, the U.S. Department of Health and Human Services National Vaccine Advisory Committee and the U.S. Food and Drug Administration Vaccine and Related Biological Products Advisory Committee.

Gellin and members of the steering committee gave more than 50 presentations at international, national, state and local immunization meetings, universities and professional conferences. Over the course of the grants they published eight articles in peer-reviewed journals and produced four resource kits or issue briefs. (See Bibliography for details on the articles and issue briefs.)

Internet Resources
The NNii Web site and other information conduits continued to grow. From April 2002 to August 2003, the site received 224,735 visitors, averaging about 13,000 visitors per month viewing more than 39,000 pages.

Most major search engines list www.immunizationinfo.org first when users search for "immunization information". By August 2003, some 899 other Web sites linked to www.immunizationinfo.org, and the site had won notice from periodicals like the British Medical Journal, the Lancet and Popular Science. Articles that focused on NNii or referenced the network's informational resources appeared online at www.wnbc.com, www.cbshealthwatch.com, www.ama-assn.org (the American Medical Association) and more than 20 other sites.

Awards conferred on NNii's Web site include: "Hot Site of the Day" from USA Today, "Cool Site of the Day" from coolsiteoftheday.com, "Editor's Choice" from Popular Science and "Reference Site of the Day" from refdesk.com. The World Health Organization's Vaccine Safety Net Project lists NNii as one of 23 Web sites on vaccine safety that meets their criteria for "essential and important good information practices."

People most frequently visit pages of NNii's resource kit, Communicating with Patients about Immunization. The network sold it in binder form for $20, or it can be downloaded free from the Web site use to inform others about the kit. Network members distributed more than 28,000 copies copies through 2002. From 1999 to 2003, subscriptions to Immunization Newsbriefs grew from 200 to more than 4,100 subscribers in more than 80 countries.

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LESSONS LEARNED

  1. Web sites for advocacy organizations should capture the effective features of www.immunizationinfo.org. This Web site collected an exemplary set of materials that anyone interested in this issue could access and use in different contexts, with multiple audiences — parents, patients, health care professionals, journalists or legislators. (RWJF Program Officer)
  2. If initiatives lack the time and/or financial resources to build a network of state and local advocates, setting up partnerships with national professional associations that have an existing infrastructure may be a step in the right direction — but only a step. To succeed at building state and local information teams, NNii needed more time and money. Given the urgency of immunization-related issues, working with like-minded national organizations allowed NNii to tap into their existing networks and, potentially, to broaden the funding burden. While the chapter structure of professional societies can identify and involve peer leaders, grass roots organizing requires time and skills that most clinicians do not have. (Communications Director, Project Director)
  3. Considerable resources are needed to help state and local networks of health care professionals with advocacy work. Without the resources to help local networks do strategic planning, define specific roles and responsibilities, obtain additional funding and fine tune their efforts, little can come of training health care professionals to advocate. (Communications Director, Project Director)
  4. Allot sufficient time to develop partnerships with other organizations and to work through tasks together. Multi-organizational networks take more time and work. "Even if you're familiar with resources," NNii's communications director warns, "don't underestimate the work involved. Double what you'd expect." (Communications Director)
  5. Interventions must begin with a needs assessment or formative research, and be adjusted as needs change. Without understanding the problem and how the target audience(s) think and behave in relation to a problem, the likelihood of campaign success is slim. As those factors change, the project and its goals must be adjusted to fit the new environment. (Communications Director)
  6. Invest in branding your project. Brand the identity of a project to get more attention. Without branding, people cannot easily identify project activities or see them multiply. (Communications Director)

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AFTER THE GRANT

Effective September 2003, Immunization for the Public Health (I4PH, a nonprofit organization in Galveston, Texas, affiliated with the University of Texas Medical Branch) took over the mission and operation of the National Network of Immunization Information. Internationally recognized leaders in immunization policy — many from NNii's founding committee — guide I4PH. Martin G. Myers, M.D., professor of pediatrics, preventive medicine and community health, University of Texas Medical Branch, directs NNii. The Infectious Diseases Society continues to provide media-related support. To sustain its credibility as a nonbiased source of information on immunization, I4PH maintains NNii policy to accept no commercial or government funding.

NNii continues to provide the same quality and range of information on a redesigned Web site, with regular updates. It now includes information in Spanish about specific diseases and their vaccines, and more than 35 new or revised articles in English. By April 2005, the NNii Web site featured more than 60 synopses of vaccine-related journal articles that explain in nontechnical language the purpose, findings and relevance of the studies. In 2005, project staff, based on an online article, developed a brochure that health professionals can give to parents entitled "Evaluating Information About Immunizations on the Internet." To access the article or to purchase booklets, go to the Web site. I4PH plans to launch an additional immunization information Web site in both English and Spanish.

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GRANT DETAILS & CONTACT INFORMATION

Project

Public Education Campaign on Childhood Vaccinations

Grantee

Infectious Diseases Society of America (Alexandria,  VA)

  • Public Education Campaign on Childhood Vaccinations
    Amount: $ 983,383
    Dates: February 1999 to January 2000
    ID#:  035252

  • Developing a Training Module on Vaccine Safety Education for Providers
    Amount: $ 377,297
    Dates: November 1999 to November 2000
    ID#:  036607

  • Implementation of an Education Campaign on Vaccine Safety
    Amount: $ 2,689,274
    Dates: February 2000 to April 2002
    ID#:  038351

  • Continuing an Education Campaign on Vaccines and Immunization
    Amount: $ 749,630
    Dates: April 2002 to August 2003
    ID#:  044378

Contact

Director of Communications, Infectious Diseases Society of America: Diana Olson
(703) 299-0201
dolson@idsociety.org

Web Site

http://www.immunizationinfo.org

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APPENDICES


Appendix 1

(Current as of the time of the grant; provided by the grantee organization; not verified by RWJF.)

National Network for Immunization Information Steering Committee, 2003

Samuel L. Katz, M.D. (Co-Chair)
Professor and Chairman Emeritus of Pediatrics
Duke University
Durham, N.C.

Louis W. Sullivan, M.D. (Co-Chair)
Former Secretary
U.S. Department of Health and Human Services
President Emeritus
Morehouse School of Medicine
Atlanta, Ga.

Louis Z. Cooper, M.D.
Professor of Pediatrics
Columbia University
New York, N.Y.

Bruce B. Dan, M.D.
President, MedNet Communications
Adjunct Assistant Professor of Preventive Medicine
Vanderbilt University School of Medicine
Nashville, Tenn.

Stanley A. Gall, M.D.
Donald E. Baxter Professor
Department of Obstetrics and Gynecology
University of Louisville School of Medicine
Louisville, Ky.
Advisory Committee for Immunization Practices at the CDC
American College of Obstetricians and Gynecologists
Washington, D.C.

Alan E. Kohrt, M.D.
Clinical Associate Professor of Pediatrics
Children's Hospital of Philadelphia and the University of Pennsylvania School of Medicine
Philadelphia, Pa.
Board of Directors
American Academy of Pediatrics
Elk Grove Village, Ill.

Martin C. Mahoney, M.D., Ph.D., F.A.A.F.P.
Chair, AAFP Commission on Clinical Policies and Research (former)
Guideline Panel of the AAFP and American Academy of Pediatrics
American Academy of Family Physicians
Leawood, Kan.

Edgar K. Marcuse, M.D., M.P.H.
Professor of Pediatrics
University of Washington
Children's Hospital and Regional Medical Center
Seattle, Wash.

Dennis L. Murray, M.D.
Professor of Pediatrics
Chief, Section of Infectious Disease
Medical College of Georgia Children's Medical Center
Augusta, Ga.
Fellow, Pediatric Infectious Diseases Society
Alexandria, Va.

Georges Peter, M.D.
Professor of Pediatrics
Brown University School of Medicine
Providence, R.I.

Gregory A. Poland, M.D.
Director, Mayo Vaccine Research Group
Professor of Medicine
Mayo Clinic and Foundation
Rochester, Minn.

William Schaffner, M.D.
Professor of Infectious Diseases
Chairman, Department of Preventive Medicine
Department of Preventive Medicine and Infectious Diseases
Vanderbilt University School of Medicine
Nashville, Tenn.

Thomas E. Stenvig, R.N., M.S., M.P.H., C.N.A.A.
Associate Professor, College of Nursing
South Dakota State University
Brookings, S.D.
Board of Directors
American Nurses Association
Washington, D.C.

Patricia Stinchfield, R.N., M.S., C.P.N.P.
Program Director, Children's Immunization Project
Adjunct Clinical Faculty
University of Minnesota School of Nursing
Minneapolis, Minn.
National Association of Pediatric Nurse Practitioners
Cherry Hill, N.J.

Patricia Whitley-Williams, M.D.
Associate Professor of Pediatrics
University of Medicine and Dentistry of New Jersey
Robert Wood Johnson Medical School
New Brunswick, N.J.


Appendix 2

Formative Research by Porter Novelli

Porter Novelli examined the parent, physician and public policy audience segments separately.

  • Staff conducted 15 focus groups with a diverse cross section of parents in February 1999 to identify the range of their knowledge, attitudes, beliefs and behaviors toward infectious diseases and immunization. Researchers then verified this information by surveying a nationally representative sample of 1,600 parents with a child younger than six or expectant parents. They interviewed parents in randomly selected households by telephone in April and May 1999. Data from this survey could later serve as a baseline for evaluation. (See Findings for results.) Project staff developed campaign messages using findings from the survey and tested them with four new focus groups.
  • Two focus groups of physicians identified the need for more accessible information on immunizations, aimed at parents and patients, than the Vaccine Information Statements from the CDC provide.
  • Porter Novelli surveyed 67 staff working on legislative health committees in 44 states. Those interviewed said that immunization was a top health priority and their committees were interested in strengthening immunization programs. Some 15 percent indicated that their legislative body had scheduled discussions on expanding exemptions from immunization, 22 percent observed that significant opposition to immunization exists in their state and 9 percent reported opposition was growing.
  • Using questions fielded nationally in other surveys, Porter Novelli tested the name 'Vaccine Initiative' against several proposed names to find out which best described NNii's function to the public. With the new name — the National Network for Immunization Information — Porter Novelli developed a logo using its acronym, NNii, and a brand identity for the organization's activities.


Appendix 3

Organizations Affiliated with the National Network for Immunization Information (during the grant period)

American Academy of Family Physicians (AAFP) aims to improve the health of patients, their families and the American people, to advance and represent the specialty of family practice and to serve the unique needs of members with professionalism and creativity.

American Academy of Pediatrics (AAP) is an organization of 57,000 primary care pediatricians, pediatric medical subspecialists and pediatric surgical specialists dedicated to the health, safety and well being of infants, children, adolescents and young adults.

American College of Obstetricians and Gynecologists (ACOG) is a private, voluntary, nonprofit membership organization of professionals providing health care for women with a current membership of 40,000 physicians.

American Nurses Association (ANA) is a professional organization representing the nation's registered nurse population.

Infectious Diseases Society of America (IDSA) is an organization of more than 7,500 physicians and scientists. It promotes and recognizes excellence in patient care, education, research, public health and prevention in the field of infectious diseases.

National Association of Pediatric Nurse Practitioners (NAP) is committed to improving the health care of children (infants through young adults) and provides leadership for the over 6,000 Pediatric Nurse Practitioners who deliver primary health care in a variety of settings.

Pediatric Infectious Diseases Society (PIDS) promotes excellence in diagnosis, management and the prevention of infectious diseases of infants, children and adolescents through clinical care, education, research and advocacy.


Appendix 4

(Current as of the time of the grant; provided by the grantee organization; not verified by RWJF.)

Funders of the National Network for Immunization Information

  • American Academy of Pediatrics, $50,000
  • Annie E Casey Foundation, $20,000
  • Children's Vaccine program at PATH, $100,000
  • Infectious Diseases Society of America*, $168,576
  • Jewish Healthcare Foundation, $20,000
  • Pediatric Infectious Diseases Society, $20,000

The total includes:

  • 2003: $25,000 contribution + $45,942 unreimbursed expenses.
  • 2004: $25,000 contribution + $39,283 to start up the NNii program in Texas + $6,829 in other unreimbursed expenses in the program.
  • 2005: $25,000 contribution + $1,522 other unreimbursed expenses in the program.

*The Infectious Diseases Society of America also has pledged to contribute an additional $25,000 to NNii for 2006.

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BIBLIOGRAPHY

(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)

Book Chapters

Gellin BG. "Vaccination." In Grolier's 2003 Multimedia Encyclopedia, CD-ROM, New York: Grolier, 2002.

Articles

Gellin BG. "Pediatricians Have Important Role in Correcting Parents' Misunderstandings about Vaccines." California Pediatrician, Spring: 19–22, 2001.

Gellin BG, Maibach EW and Marcuse EK. "Do Parents Understand Immunizations? A National Telephone Survey." Pediatrics, 106(5): 1097–1102, 2000. Also available online.

Gellin BG and Schaffner W. "The Risk of Vaccination — The Importance of 'Negative' Studies." New England Journal of Medicine, 344(5): 372–373, 2001.

Havinga W. "Too Many Vaccinations?" Pediatrics, 110(3): 648–649, 2002. Also available online.

Kastner JL and Gellin BG. "Measles-Mumps-Rubella Vaccine and Autism: The Rise (and Fall?) of a Hypothesis." Pediatric Annals, 30(7): 408–415, 2001.

Katz SL and Shine KI. "Guaranteeing Vaccines for All Americans." January 4, 2002. National Academies Office of News & Public Information, National Academies Op-Ed Service Archive.

Marshall GS and Gellin BG. "Challenges to Vaccine Safety." Primary Care Clinics in Office Practice, 28(4): 853–868, 2001. Abstract available online.

National Network for Immunization Information. "Nurses' Perceptions and Intentions Regarding Smallpox Vaccine: A National Survey." Alabama Nurse 30(1): 11, 2003. Available online.

Offit PA, Quarles J, Gerber MA, Hackett CJ, Marcuse EK, Kollman TR, Gellin BG and Landry S. "Addressing Parents' Concerns: Do Multiple Vaccines Overwhelm or Weaken the Infant's Immune System?" Pediatrics, 109(1): 124–129, 2002. Also available online.

Offit PA, Quarles J, Gerber MA and Marcuse EK. "Immunization's Undaunted Record." Seattle Post Intelligencer, February 17, 2002.

Reports

Grantmakers In Health. Issue Brief No. 4: Victims Of Our Own Success: Will Immunization Remain the Paradigm of Effective Prevention? Washington: Grantmakers In Health, June 2000. Also available online.

National Network for Immunization Information. Communicating With Patients About Immunization: A Resource Kit from The National Network for Immunization Information. Alexandria, Va.: National Network for Immunization Information, 2000. Revised January 2003. Also appears online.

National Network for Immunization Information. Know the Facts about Immunization. Alexandria, Va.: National Network for Immunization Information, 2000. Also appears online.

National Network for Immunization Information. National Network for Immunization Information Brochure. Alexandria, Va.: National Network for Immunization Information, October 1999, revised March 2002.

National Network for Immunization Information. Nurses' Perceptions and Intentions with Regard to the Smallpox Vaccine: A National Survey Report. Alexandria, Va.: November 2002.

Porter Novelli. Survey Research Conducted among Parents and Expectant Parents: Final Report. Washington: Porter Novelli, 1999.

Public Health – Seattle & King County (with input from the National Network for Immunization Information). Plain Talk About Childhood Immunizations. Seattle: Public Health – Seattle & King County, 2000. Also appears online.

Usability Studies, Inc., Usability Study: NNii Web Site Usability Testing and Evaluation Report. Superior, Colo.: Usability Studies, Inc., November 28, 2001.

Audio-Visuals and Computer Software

National Network for Immunization Information, a video news release giving a digest of an NNii presentation at the 2000 Annual Meeting of the American Academy of Pediatrics, including findings from a national telephone survey findings published in Pediatrics, Chicago: National Network for Immunization Information, October 30, 2000.

Survey Instruments

"Name Test #3." Porter Novelli, fielded August 27–31, 1999.

"National Network for Immunization Information 1999 National Survey Instrument." Porter Novelli, fielded April–May 1999.

"Nurses' Perceptions and Intentions with Regard to the Smallpox Vaccine." National Network for Immunization Information, fielded November 2002.

World Wide Web Sites

www.immunizationinfo.org provides comprehensive information on immunization and vaccines; information about vaccine-preventable diseases; a database of state-by-state vaccine requirements; a downloadable resource kit for health care professionals, Communicating with Patients About Immunization: A Resource Kit from the National Network for Immunization Information; and Immunization Newsbriefs, abstracts of recent news about immunization with an archive of past issues of the listserv. Alexandria, Va.: National Network for Immunization Information, October 2000.

www.vaccine.org. The Allied Vaccine Group is a Web portal composed of Web sites that present valid scientific information on the subject of vaccines. Users can search multiple sites simultaneously to find information. Cape Coral, Fla.: UniScience News Net, Inc., April 1998.

Presentations and Testimony

Bruce Gellin, written statement for the House Committee on Government Reform, Hearing on Autism, "Autism: Present Challenges, Future Needs — Why the Increased Rates?" Washington, April 6, 2000.

Samuel Katz, statement before the House Committee on Government Reform Hearing, "Vaccines — Finding the Balance Between Public Safety and Personal Choice," Washington, August 3, 1999. Available online.

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Report prepared by: Antonia Sunderland
Report prepared by: Jan Hempel
Report prepared by: Linda Bernstein Jasper
Reviewed by: Kelsey Menehan
Reviewed by: Molly McKaughan
Program Officer: Paul Tarini

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