3
Informed Vaccine Decision Making

The desired outcome of the National Vaccine Program and of the National Vaccine Plan is a population protected from vaccine-preventable death and disease through safe and effective vaccines. However, the means to achieve that end must change, just as society itself has changed. In general, it is apparent that long-standing and existing approaches to communicating about vaccination are no longer either sufficient or entirely appropriate. Vaccine communication approaches have been evolving incrementally, but greater and more rapid change is needed. Continuing to use the old approaches (e.g., printed information, material posted on government websites that members of the public may not even know exist or how to access them) does not meet the needs of many groups, and may seem out of touch with a reality characterized by differences in literacy levels, socio-economic disparities that affect access to information, and the needs of families seeking to make informed decisions amidst a maelstrom of conflicting messages (often not based on science) conveyed through social media and online communities. An improved approach is needed to sustain and further the disease prevention achievements of the 20th century. Such an approach requires communication that supports vaccine decision making by the public, providers, and policy makers by conveying detailed information about risks and benefit to both the individual and the community (in an appropriate context and effectively translating scientific uncertainty and other complex but important concepts); valuing individual autonomy and the needs of engaged patients and parents; and increasing the public understanding of vaccine policy making.

Goal 3 of the 1994 version of the National Vaccine Plan (better edu-



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3 Informed Vaccine Decision Making The desired outcome of the National Vaccine Program and of the National Vaccine Plan is a population protected from vaccine-preventable death and disease through safe and effective vaccines. However, the means to achieve that end must change, just as society itself has changed. In gen- eral, it is apparent that long-standing and existing approaches to communi- cating about vaccination are no longer either sufficient or entirely appropri- ate. Vaccine communication approaches have been evolving incrementally, but greater and more rapid change is needed. Continuing to use the old approaches (e.g., printed information, material posted on government web- sites that members of the public may not even know exist or how to access them) does not meet the needs of many groups, and may seem out of touch with a reality characterized by differences in literacy levels, socio-economic disparities that affect access to information, and the needs of families seek- ing to make informed decisions amidst a maelstrom of conflicting messages (often not based on science) conveyed through social media and online communities. An improved approach is needed to sustain and further the disease prevention achievements of the 20th century. Such an approach re- quires communication that supports vaccine decision making by the public, providers, and policy makers by conveying detailed information about risks and benefit to both the individual and the community (in an appropriate context and effectively translating scientific uncertainty and other complex but important concepts); valuing individual autonomy and the needs of engaged patients and parents; and increasing the public understanding of vaccine policy making. Goal 3 of the 1994 version of the National Vaccine Plan (better edu- 

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0 PRIORITIES FOR THE NATIONAL VACCINE PLAN cation about the benefits and risks of immunization) was revised in the updated draft plan, and now reads: “support informed vaccine decision- making by the public, providers, and policy-makers” (HHS, 1994, 2008). Communication and risk communication (i.e., two-way communication about threats; Covello, 2008) are implicit in the reframing of the goal, and the language used seems timely and sensitive to public concerns about some aspects of vaccine policy, specifically the contentious area of child- hood vaccination. The goal’s pairing of information and decision making also highlights some major contemporary challenges in the national immunization enter- prise. On the one hand, the increasing prominence of vocal opposition to vaccines and immunization accompanied by data indicating diminished trust in government public health agencies and vaccine manufacturers causes great concern that these may lead to lower vaccination rates and increased threat of vaccine-preventable diseases. On the other hand, the high-profile of controversies about the safety of vaccines for children may obscure the fact that immunization is important at every age, and unfortunately adult immunization rates in the United States are low for most vaccines recom- mended by the Advisory Committee on Immunization Practices (ACIP) (NFID, 2008). Among the public, this is due to limitations in the knowledge or misperceptions about the purpose and effects of vaccination (Johnson et al., 2008). Among providers, barriers to immunization include the lack of an adult equivalent of the “well-child visit” in which immunization could be easily incorporated1 and inadequate insurance coverage (Flowers, 2007; Johnson et al., 2008). The National Vaccine Plan could be enhanced if the vision seemingly expressed in the title of Goal 3 were described more fully in the plan and traced to its conclusion in the objectives and strategies of that goal. This would mean reconciling the apparent paradox of informed decision mak- ing and required vaccination, but more importantly, taking steps to ensure that contemporary communication about vaccines is fully informed by the broad societal context, uses available research and technology effectively, and meets the needs of all age groups and diverse populations. This chapter describes the contemporary societal context of the immunization enterprise, provides a succinct summary of stakeholder input on Goal 3 with references to relevant literature, and communicates two recommendations on priority actions related to this goal. 1 Medicare Part B covers a one-time preventive physical exam within the first 12 months of enrollment, which includes education and counseling about preventive services such as immu- nizations. However this one-time service is not widely used (fewer than 3 percent of Medicare enrollees) and does not cover the full adult population in need (HHS, 2009).

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81 INFORMED VACCINE DECISION MAKING The Changing SoCial ConTexT of VaCCine CommuniCaTion With the exception of calling for vaccine information on risks and benefits to be provided to parents and patients, the 1986 statute makes no mention of the National Vaccine Program (and thus, the National Vaccine Program Office’s [NVPO’s]) role in communication about immunization in general and about risks in particular. However, societal trends and the public perception of vaccines over the years since 1986 have made communication a central function and need. These factors clearly contributed to NVPO and its partners’ reframing of Goal 3 (compared to the 1994 version) in the draft update of the National Vaccine Plan, and include the following: • Public complacency about vaccine-preventable diseases driven by the great success of earlier immunization programs and resultant declines in or elimination of such diseases (e.g., polio) as evident in low rates of vaccine-preventable diseases, • Change in the patient-clinician relationship, including patients who are more engaged participants in health care,3 • Greater interest and dialogue in the public arena about the benefits, risks, and areas of scientific uncertainty about vaccines (among other medi- cal interventions), • Change in how people communicate, and how they access and exchange information about all topics, including health in general and im- munization in particular4 (e.g., tools such as the Internet offer opportunities for both greater knowledge and greater confusion or misinformation), and • Hesitancy to receive vaccines and skepticism about their safety, much of which may be influenced by some representations of vaccination in the mass media, by the new media-heightened profile of individuals and groups opposed to childhood immunization or to immunization in general and by the social amplification of risk (Fischoff, 199) fueled by several well-publicized vaccine injury compensation cases. As discussed in Chapter , monitoring and assuring6 vaccine safety are the responsibility of several government agencies, most notably the Food  National Childhood Vaccine Injury Act, Public Law 99-660, 4 U.S.C. 300aa-1, § 101 1986. 3 Examples include the safety and quality movements in health care; the emergence of clinicaltrials.gov; consumer interest in and questions about professional and scientific conduct and conflicts of interest; public awareness of the effects of political processes on the scientific enterprise; and the proliferation of health-related information on the World Wide Web. 4 This has been substantially documented by the Pew Internet & American Life Project.  Such individuals and groups constitute a diverse array of viewpoints and motivations. 6 Refers to the assurance function of public health (one of three core functions [IOM, 1988]).

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 PRIORITIES FOR THE NATIONAL VACCINE PLAN and Drug Administration (FDA) and the Centers for Disease Control and Prevention (CDC). The vaccine safety system has a strong track record and considerable and growing capabilities to detect and respond to vaccine adverse events. However, communicating about vaccines, including vaccine safety, has been a complex and, for government public health agencies and their partners, a largely unsuccessful endeavor. This is in part due to the increasing polarization in the public debate, “which has limited effective dialogue between the contrasting viewpoints. This polarization presents an important challenge to public health officials, who must be careful to ensure that while they reinforce to the public the safety of vaccines, they do not overlook or underplay a potential threat” (Wilson et al., 2006). One of the five factors described above—changes in the methods or tools of communication—signals an important and growing departure from the traditional sources of vaccine information and loci of vaccine-related communication. The public accesses and receives information about vac- cines and immunization from a variety of sources, and individuals do not necessarily turn to government sources or rely on their health care provid- ers as sole sources of information. Sources such as the World Wide Web, blogs, message boards, and organizations both supportive of and opposed to vaccination contribute to the public’s decision-making process (Ache and Wallace, 2008; Baker et al., 2003). A 2002 survey supported by the Pew Internet & American Life Project found that 13 percent of Americans reported looking online for “information about immunizations or vaccina- tions” (Pew, 2003). More recently, a Pew study reported that “79 percent of online young adults 18-29 look for health information,” and 18 percent of these look for immunization information (Lenhart, 2009). Keelan et al. (2007) analyzed 153 immunization-related videos on the video-sharing website YouTube. They characterized 48 percent as positive, 32 percent as negative, and 20 percent as ambiguous in their perspective on immunization. Interestingly, they found that negative videos were more likely to receive a rating, had a higher mean star rating,7 and received more views. Although this descriptive analysis represents one of the early forays in learning about the role of social media in shaping views about immunization, it demon- strates the need for research to inform public health communication and support health care providers in familiarizing themselves with influences on public knowledge about and attitudes toward immunization. A recent HealthStyles8 survey by CDC showed that 40 percent of those surveyed turned to Internet sources for health information, and 41 percent of that sample answered yes to CDC’s being the information source they 71 star = poor; 5 stars = awesome. 8The HealthStyles survey is one of a pair of linked postal mail surveys sent to a sample of adults 18 years and older, which is drawn to be nationally representative on seven U.S. Census Bureau demographic characteristics.

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 INFORMED VACCINE DECISION MAKING trust most (43 percent were unsure, and 15 percent said no) (CDC, 2008). In addition, media can play a role in the public’s understanding of science (Hargreaves, 2001, 2003), as in the case of the controversy about a link between the measles-mumps-rubella (MMR) vaccine and autism that was posited in an article by Wakefield et al. (1998), which has since been with- drawn and rejected on the basis of the evidence (IOM, 2004; Murch et al., 2004). It is essential that with support from government public health agencies, public health and medical professionals apprise themselves of the nature of information available from the Internet or media sources and become equipped to respond to patients and their family members who ask questions or request clarification. Challenges and Needs In its public information-gathering meeting on Goal 3 of the draft plan, the committee heard the views of a variety of stakeholders, ranging from academic researchers to parent groups. The major themes that emerged in- cluded patient, provider, and population-level considerations and were for the most part unsurprising. They reflected a concern shared by leaders in the public health and medical communities that there has been a noticeable deterioration of public trust in the immunization system (see also Cooper et al., 2008). Two other themes that describe challenges and needs in the field are provided below: 1. Public health and medical communities’ slowness in adapting to the gradual shift in the context of vaccination and fully utilizing existing evi- dence to improve the communication efforts as evident in the following: Decreasing societal consensus about the benefits of immunization • Gaps in patient and public knowledge about vaccines and • immunization Gaps in provider knowledge • 2. Gaps in the research and evidence needed to inform communication.9 9 The old approach to risk communication complemented the use of child immunization requirements, a successful policy instrument that has helped to dramatically lower rates of vaccine-preventable diseases (Malone and Hinman, 2003). However, there are signs that the general public consensus about childhood immunization once taken for granted has deteriorated (decreased confidence in vaccines; increase in exemptions from immunization re- quirements in states allowing philosophical exemptions; CDC, 2008; Irving et al., 2007; NCSL, 2009; Omer et al., 2008, 2009; Salmon et al., 1999). Effective communication is essential to explain how policy decisions are made, how benefits and risks are weighed, and both the value and the ethical complexities raised by immunization mandates.

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 PRIORITIES FOR THE NATIONAL VACCINE PLAN Slowness in Adapting to Change First, the effects of changes in the social context of communication and in the burden of vaccine-preventable diseases have previously been noted in the 1996 Institute of Medicine (IOM) workshop on Risk Communica- tion and Vaccination (IOM, 1997), the 2000 NVPO Workshop on Vaccine Communication, and an article in the 2002 Jordan Report (a periodic compendium of current issues in vaccine research) titled “The Evolution of Vaccine Risk Communication in the United States: 1982-2002” (HHS et al., 2002; IOM, 1997; NVPO, 2000). However, while individuals and groups opposed to vaccines have availed themselves of new communication tools and used them to great effect, the response of the public health and medical communities has not been sufficiently swift, sustained, and strategic. This has been especially evident in communication efforts at the population level, as reflected in the general absence of a federal public health voice in the highly publicized controversies about immunization. Sometimes, mes- sages provided by government agencies may have contributed to confusion or misunderstanding of the issues. One example may be found in the news release that followed three high-profile decisions of the U.S. Court of Federal Claims in 2009, which stated: “[h]opefully, the determination by the Special Masters will help reassure parents that vaccines do not cause autism” (HHS Press Office, 2009). This sentence regrettably contributes to the conflation of scientific causality and legal finding, reinforcing the misunderstanding that legal decisions prove scientific facts. Some of the evidence and the ethical motivation needed to improve communication have been available for some time. For example, it is well understood that communication needs to be informed by social and behav- ioral science; that providers need to be equipped with information, tools, and time to counsel patients and, where applicable, their families; and that the public must be invited to the table and engaged as an equal partner in the dialogue on immunization (e.g., IOM, 1997; see Box 3-1 and Appendix E for a short history of public engagement activities). However, increased in- terest in seeking exemptions from immunization requirements, the negative perception of immunization (as reflected by CDC surveys; Sheedy, 2009), the high profile of vaccine controversies in the mass media, and the knowledge gaps among both providers and patients may indicate that not enough is being done to apply what is known to the development of a comprehensive communication strategy. The committee was informed by stakeholders at its April 2009 meeting on Goal 3 of the plan that some health care providers lack the knowledge, training, and materials to convey information about vaccine risks and ben- efits to patients. This is consistent with findings in the literature (Davies et al., 2002; Davis et al., 2004). Health care financing is not structured to reimburse providers for communicating with patients about vaccines, let

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 INFORMED VACCINE DECISION MAKING Box 3-1 A History of Public Engagement The committee reviewed the efforts of NVPO and the National Vaccine Advisory Committee (NVAC) to engage the general public in the National Vaccine Plan and the research agenda of the Immunization Safety Office (ISO). The activi- ties conducted in 2008 and 2009 followed an occasional series of notable public engagement activities on vaccine policy issues spearheaded by the Department of Health and Human Services (HHS: CDC and NVPO) over the past decade and a half (e.g., the 2002 Wingspread Public Engagement Planning Group [Keystone Center, 2003], the 2004 CDC Blue Ribbon Panel [CDC, 2005], the 2004 Vaccine Policy Analysis Collaborative [VPACE: Hamlin, 2004], and the 2005 Public Engage- ment Pilot Project on Pandemic Influenza [PEPPPI] process [Bernier, 2006]). (See Appendix E for more details.) More recently, beginning in April 2008, NVAC (supported by NVPO) has been involved in two major public engagement activities: (1) a review of the draft ISO research agenda to identify gaps and help set priorities and (2) engagement with the public and other stakeholders to obtain input on the draft National Vaccine Plan. As part of the NVAC-NVPO process for the ISO agenda, one stakeholder and three public engagement workshops (convened in Alabama, Oregon, Indiana) have been held; stakeholder and public comments have been solicited via the Federal Register and other outreach; and an NVAC vaccine safety writing group has developed a list of research gaps and criteria for prioritizing items in the ISO research agenda that was used as a basis for discussion at a stakeholder meeting held in March 2009. For the draft National Vaccine Plan, NVPO has solicited feedback via the Federal Register; through vaccine-related meetings in which NVPO staff discussed the plan; and at an NVAC meeting in February 2009 to discuss the plan and com- ments on the draft plan received by NVPO. NVPO also held three public engage- ment activities in March and April 2009 in Saint Louis, Missouri; Syracuse, New York; and Columbus, Ohio. NVAC, with the support of NVPO, is also beginning work on a review of the current federal vaccine safety system and the development of “a White Paper describing the infrastructure needs for a federal vaccine safety system to fully char- acterize the safety profile of vaccines in a timely manner, reduce adverse events whenever possible, and maintain and improve public confidence in vaccine safety” (NVAC, 2008). The committee praises CDC and ISO for going substantially beyond the recommendation of the 2005 IOM committee that public input be obtained on the Vaccine Safety Datalink research plan. CDC and ISO have opened the entire ISO agenda to public viewing and wide input, facilitated by NVAC and NVPO. alone to encourage and reward provider performance in this area (Chapter 4 discusses financing challenges in more detail). Davis et al. (2004) found that at in least one type of clinical setting, “[v]accine communication of side effects, risks, benefits, screening for contraindications, and the next visit lasted for an average of 16 s[econds] for all vaccines.”

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 PRIORITIES FOR THE NATIONAL VACCINE PLAN Furthermore, the committee learned from stakeholders that patients and their family members have questions about vaccine risks, benefits, contra- indications, and other issues that are not addressed or are inadequately ad- dressed in the public sphere (e.g., mass media, government communication efforts) or in the context of visits with their health care providers (IOM, 2009b). This is supported by the literature (Davis et al., 2001; Gust et al., 2008; NFID, 2008). Among adults, there is a widespread lack of aware- ness of immunization as a tool for preventing disease and death in all age groups (NFID, 2008). There are also misperceptions about the benefits and risks of vaccines and confusion about the messages available in the public sphere, regarding both vaccine effectiveness and who should be vaccinated (Flowers, 2007; IOM, 2009b). For example, older adults have reported being confused about messages regarding influenza immunization, issues of vaccine availability, such as shortages and availability in one’s medical home, and effectiveness (due both to the poor match of vaccine to circulat- ing strains and to the waning of immune response to vaccines due to age) (IOM, 2009b). In the nationally representative HealthStyles survey, one-third of 4,035 parents of children under 6 years of age believed that they did not have ac- cess to enough immunization information (Gust et al., 2005). This lack of knowledge increases the likelihood of confusion when parents and patients are confronted with conflicting messages about vaccine benefits and risks (Downs et al., 2008; Gust et al., 2008). As noted earlier, changes in the risk-benefit profile of vaccines due to decreases in the prevalence of many vaccine-preventable diseases play a role in shaping parents’ views about immunization. Kennedy and colleagues (2005) found that the decreased likelihood of contracting a disease contributed to parents’ opposition to immunization requirements. The committee also heard that some parents believe their concerns about vaccine safety are not taken seriously and are dismissed by health care providers or by the federal government (CDC, 2008; Cooper et al., 2008; IOM, 2009a). Gaps in Research At the committee’s April 2009 stakeholder meeting, discussion included communication research needs. There was agreement that more research is needed to help inform vaccine communication messages and efforts. Both quantitative and qualitative research are needed, and given the broad array of factors that contribute to decision making about vaccination, undertaking interdisciplinary research is important. The committee found limited evidence of efforts to evaluate communi- cation activities undertaken by government public health agencies and their partners (Irving et al., 2007). For example, although there are studies that

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 INFORMED VACCINE DECISION MAKING have examined providers’ use of vaccine information statements, which are required by law but seem to define the lower threshold of the range of pos- sible activities to communicate vaccine risk and benefits, there is little or no evaluation of their effectiveness as a communication tool (Davis et al., 2001, 2004; Irving et al., 2007). Childhood vaccination is the most visible component of immunization in America, and as a result, research on communication issues pertaining to childhood vaccination and related decision making is more advanced than research on adult vaccination issues. The National Vaccine Plan cannot address every problem in the vac- cine system, but the committee believes it could signal a high-level change of direction in vaccine communication. The language of Goal 3 seems to hint at a new kind of conversation about vaccines. This conversation needs to balance individual choice and patient engagement with responsibility to the community as partners in health care decision making, requiring a fuller dialogue about matters of science, public health practice, and policy (Diekema, 2006). The committee has identified two priority actions within Goal 3: 1. Development of a national vaccine communication strategy, and 2. A process to develop a communication research agenda. A NATIONAL VACCINE COMMUNICATION STRATEGY The communication efforts of most government public health agencies appear to have been slow to adapt to the new environment and the new challenges described in this report. Public confidence in the national vac- cine program and awareness of the value of immunization has deteriorated (Cooper et al., 2008; Irving et al., 2007; Sheedy, 2009). By calling for a coordinated national strategy for vaccine communication and its well- resourced implementation, the National Vaccine Plan can help move public health communication about vaccines and immunization toward greater transparency, sophistication, and cohesion. Although CDC undertakes considerable efforts to communicate about immunization, there is no coordinated government or public health com- munication presence that addresses the depth and breadth of concerns that the public and other stakeholders have about vaccines. There is not enough coordination of vaccine communication across federal agencies involved in the vaccine enterprise and among federal, state, and local levels of govern- ment, sometimes resulting in insufficient and inconsistent messaging to the public. In the context of considerable gaps in the knowledge of both providers and patients, and active campaigns by individuals and groups to share their

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 PRIORITIES FOR THE NATIONAL VACCINE PLAN strongly held concerns about the safety of vaccines and immunization, it no longer is sufficient for federal public health agencies to impart information as crises arise, that is, to engage solely in reactive communication. Federal agencies, their state and local counterparts, and relevant partners need to engage in dialogue with the public about vaccines and vaccine safety on an ongoing basis, and to anticipate information needs in their planning. A current example of one area in which this is occurring is CDC’s prepara- tions to communicate about background rates of common health events (miscarriages, heart attacks, etc.) in preparation for implementing H1N1 vaccination in the fall of 2009 (McNeil, 2009). Studies show that health care providers are important influences in pa- tient or parent decision making regarding immunization, but considerable proportions of health care providers lack information about vaccines, may not provide the minimum vaccine information required by the 1986 law, and their immunization practices may not reflect current ACIP guidance about the optimal use of vaccine for children, adolescents, and adults (Daley et al., 2006; Davis et al., 2004; Flowers, 2007; Gust et al., 2008). Health care providers may need both knowledge and tools to help them counsel patients of all ages. Communication Challenges There are many gaps in communication and in the knowledge base that informs communication. There are also significant racial and socioeconomic disparities in vaccination rates that are unrelated to vaccine hesitancy or opposition (Roemheld-Hamm et al., 2008; Schwartz, 2009). Hispanic and African-American populations have consistently lower rates of vaccination, particularly among the elderly within these groups (Flowers, 2007). Some of the structural barriers to immunization, such as lack of insurance coverage for preventive health care services and lack of alternate immunization sites, are beyond the scope of a communication strategy. Implementing a national communication strategy will require attention to the needs of different age groups (including adults); to variations in socio- economic status, cultural background, and literacy; and to the information needs of groups such as health care workers. There also are inequities in education, access to, and utilization of information technology across dif- ferent segments of the population that will also have an impact on the vac- cine communication strategies that need to be developed. A communication strategy cannot be a one-size-fits-all informed decision making process. Chapter 2 describes the Vaccine Injury Compensation Program (VICP). Confusion can arise when court decisions and their implications are not made to clear to the public. Although the committee is aware of rules that bar HHS from communicating about legal decisions that emerge from the

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 INFORMED VACCINE DECISION MAKING VICP, silence in the face of public questions does not advance trust in the immunization enterprise. Also, communicating to the public that awards for off-table events do not constitute scientific proof of vaccine risk is a formidable challenge. Failure to distinguish between scientific causality and legal finding may lead to an exaggerated perception of vaccine risks and cast unwarranted doubt on the safety of immunization. The vaccine system’s credibility relies on an open and balanced presenta- tion of benefits and risks, and of what is known and unknown. Confidence in vaccination can be enhanced by transparent communication about all aspects of the system (CDC, 2005). The content of vaccine communica- tion must address its multiple purposes—providing accurate and relevant information, addressing individual and societal concerns, and encouraging vaccination. Those who perceive themselves or their children to be at risk for adverse events may want information related to causality and responsibility in the case of adverse events; health experts and practitioners, however, may want data on vaccine safety and benefits. Not enough is known about com- mon perceptions and understanding, knowledge levels, and points of con- tention and tension with respect to vaccines and immunization (Bostrom, 1996; Downs et al., 2008). To promote informed consent and informed de- cision making, the National Vaccine Plan needs to take account of the gaps in current communication and education and to address the complexity of public and stakeholder concerns surrounding vaccines and immunization. The committee believes that the National Vaccine Plan offers an op- portunity to point the way forward or even signal a transformation in how society communicates about immunization. Given the complex challenges inherent in risk communication, solutions would seem to require more than merely a technical fix (e.g., more and better communication) or even a scientific fix (more and better safety science, an area of considerable need discussed in Chapter 2). Rather, addressing the vaccine risk communication needs of a diverse population in the 21st century requires a comprehensive approach that can be outlined in a national plan. The committee has found no evidence of a national vaccine communica- tion strategy. At the level of CDC itself, there is no strategic plan to guide the work of the communication office that supports the National Center for Immunization and Respiratory Diseases. Instead, communication re- garding vaccines has been largely reactive to crises and does not adequately convey information about vaccine risks and benefits. This is not surprising in an office that is understaffed and has limited funds to complete its work. The CDC vaccine communication office has a core budget of $1,868,385 (formerly allocated through the National Center for Health Marketing that was the office’s home until recently). It covers items such as staff salaries (nine full-time employees), benefits, travel, equipment and supplies, and contractors. The communication office also receives $1,050,000 in Vaccines

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0 PRIORITIES FOR THE NATIONAL VACCINE PLAN for Children (VFC) and Section 317 funding (discretionary federal funding to support vaccination services for non-VFC eligible underinsured children or children whose parents cannot afford the out-of-pocket costs of vaccina- tion; a smaller proportion may be used for adolescent and adult immuniza- tion programs) that supports contracts for child and pre-teen vaccination communication campaigns, and $1.8 million in supplemental pandemic influenza funds for the annual seasonal influenza vaccination campaign.10 There seem to be limited resources dedicated to communication about adult immunization issues (other than influenza) or to evaluate the effectiveness of current efforts (see discussion below). The universe of vaccine information, science, safety research, quality control, and policy decisions is large and complex. Both professionals and the public poorly understand many aspects of the system. Pertinent informa- tion needs to be communicated in a strategic and comprehensive manner to reach the overarching goal of informed decision making. There is no coherent effort to apply existing communication science and other evidence (e.g., surveys) to shape a research agenda that could inform the national strategy that is comprehensive and addresses communication needs to support vaccine decision making at all ages. Recommendation 3-1: The National Vaccine Plan should incor- porate the development of a national communication strategy on vaccines and immunization targeting both the public and health care professionals. Such a strategy should: (a) Reflect current research on communication;11 (b) Describe how relevant government agencies will coordinate and delineate primary responsibility for specific components and audiences; (c) Anticipate, plan, and support rapid response to emerging high-profile scientific, safety, policy, or legal developments; (d) Provide the right information to the right individual(s) or group(s) in the most appropriate manner, with attention to literacy, linguistics, and culture of the target audience(s); and (e) Receive adequate support of dedicated human and financial resources. Communication cannot be an afterthought and requires upfront in- vestment, planning, and implementation. A communication strategy as described above will need to be multi-tiered, with the federal government playing a role in coordinating and directing overall messaging and with 10 Personal communication, K. Sheedy, CDC, July 2009. 11 See Recommendation 3-2.

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 INFORMED VACCINE DECISION MAKING adequately resourced state and local public health agencies and the medi- cal community on the frontlines. Also, all components of a communication strategy will also require evaluation—an activity frequently not undertaken and for which little or no funding is available (see, for example, Irving et al., 2007). Although different federal agencies have critical roles to play in com- munication and CDC has the primary role, NVPO seems well positioned (although not adequately staffed or funded), given its interagency coordi- nating function described by statute, to spearhead certain aspects of com- munication. For example, communicating the risks and benefits of vaccines to individuals and to society and proactively anticipating and preparing for the likely impact of court decisions in the VICP on how the public perceives the safety of vaccines are areas where NVPO could provide leadership. A targeted and successful communication infrastructure and strategy is one that is sustained and dynamic over time, results in informed choices (a shift from a focus just on increasing immunization rates), is evidence based, and is supported by adequate resources and good coordination among agencies and stakeholders. It would not be exclusively campaign based or simply reactive to flare-ups of concern. Such a strategy would balance two seemingly but in reality not dichotomous sets of objectives: (1) to increase rates of vaccination to protect individuals and the population from disease and (2) to support informed decision making through honest, frank, and open communication (Bostrom, 1996; Covello, 2008; Slovic, 1987). As recommended in a 2005 IOM report on data sharing, scientific evidence should be put into the appropriate statistical context, with clear character- ization of the uncertainties in findings, the strengths and limitations of the data, and the consideration that new data could change interpretations. The strategy would focus on communicating uncertainty, careful tailoring to each audience (e.g., providers, public, employers), choice of appropriate setting to maximize usefulness (e.g., prenatal visits, other “anticipatory” settings), and dissemination channels (e.g., peer-to-peer influence, role of the Internet or mass media). The strategy would ideally be designed to fa- cilitate societal support of immunization informed by changes both in the social environment over the past two to three decades and in the science on vaccine safety. While health risk communication has benefited from burgeoning re- search, progress on the science and practice of vaccine risk communication has been minimal as has movement toward rigorously evaluating the effec- tiveness of risk communication strategies (Irving et al., 2007).12 Risk com- munication in the context of vaccines and public and individual health risks 12 Communication on H1N1 vaccine could be considered a starting point or case study for evaluation.

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 PRIORITIES FOR THE NATIONAL VACCINE PLAN needs to be further explored. Additional research is needed on perceptions of vaccine risk and individual health decision-making processes. There must be a better understanding of the most effective ways for providers to address patient and parental concerns and questions about immunization. It also is important that government agencies address public concerns while convey- ing technical information at a level appropriate to the intended audience. As noted in the 1994 National Vaccine Plan, research is needed on an ongoing basis to assess the public’s perception of vaccines and vaccine safety, to provide information about how people make vaccination decisions, and to ascertain how these decision factors may vary among subgroups, in order to ensure that communication efforts are appropriately targeted. Ongo- ing research is needed to address issues related to the best way to address scientific uncertainty in safety information on vaccines, tailor messages to different groups, and take advantage of emerging technologies and com- munications strategies (e.g., blogs, social networking sites). Recommendation 3-2: The National Vaccine Plan should incorpo- rate a process for identifying research needs to inform the national communication strategy, including research on how the public ob- tains information about vaccines and immunization, perceives risks, and makes decisions concerning vaccination in the contemporary information environment. Because the research related to vaccine communication spans many disciplines and because of the fragmented nature of vaccine communica- tion across federal agencies and the public, private, and consumer sectors, it would be useful for an agency to serve as an intermediary in shaping vaccine-related information around safety. As noted earlier, CDC’s efforts in communication about vaccines are spread out over many areas and its resources are not adequate for all communication needs (e.g., supporting providers with training and information, conducting public communication campaigns for all age groups). It is unclear to what extent FDA and the National Institutes of Health collaborate with CDC on vaccine communica - tion and whether communication efforts at the federal level reach the degree of integration and coordination necessary to use the best current evidence (from communication science, interdisciplinary research, and evaluation of existing communication activities) to inform future communication activities. A stronger, adequately funded and staffed NVPO could support in- teragency coordination in the area of communication, in part by helping to identify communication needs that span the entire National Vaccine Program. As noted elsewhere, NVPO could play a convening role (e.g., its 2000 workshop on vaccine risk communication) and could use its resources

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 INFORMED VACCINE DECISION MAKING to provide support for agency strategic planning on communication and to fund promising research in the area of communication. Because communication is a cross-cutting activity that is necessary for every other component of the vaccine enterprise and the plan itself, ac- complishing the priorities identified by the committee would necessitate a special role for NVPO (owing to its placement in the office of the Assistant Secretary for Health and its presumably panoramic view of federal agen- cies’ functions with regard to vaccines and immunization) as a departmental communicator on critical vaccine and immunization issues. This role will ideally include a continuation of the public engagement tradition advanced by NVPO—serving as a data and best-practices repository to support proactive communication in the department. NVPO also could support department-wide strategic planning of communication activities for specific policy purposes and to complement key ongoing activities. REFERENCES Ache, K.A., and L.S. Wallace. 2008. Human papillomavirus vaccination coverage on Youtube. Am J Pre Med 35(4):389-392. Baker, L., T.H. Wagner, S. Singer, and M.K. Bundorf. 2003. Use of the internet and e-mail for health care information: Results from a national survey. JAMA 289(18):2400-2406. Bernier, R.H. 2006 (March). P ublic Engagement Pilot Project on Pandemic Influ- enza (PEPPPI) . Available: h ttp://cdc.confex.com/recording/cdc/nic2006/pps/free/ 4db77adf5df9fff0d3caf5cafe28f496/paper11639_2.pps [accessed January 27, 2009]. Bostrom, A. 1996. Vaccine Risk Communication: Lessons From Risk Perception, Decision Making and Enironmental Risk Communication Research. Available: http://www. piercelaw.edu/risk/vol8/spring/bostrom.htm [accessed February 2009]. CDC (Centers for Disease Control and Prevention). 2005. Blue Ribbon Panel Meeting, Sum- mary Report, June  and , 00. Available: http://www.cdc.gov/od/ads/brpr/brprsumm. htm [accessed January 27, 2009]. CDC. 2008. Most U.S. Parents are Vaccinating According to New CDC Surey Vaccine Coer- age Rates for Children Remain High. Available: http://www.cdc.gov/media/pressrel/2008/ r080904.htm [accessed April 2009]. Cooper, L.Z., H.J. Larson, and S.L. Katz. 2008. Protecting public trust in immunization. Pediatrics 122(1):149-153. Covello, V.T. 2008. Risk Communication: Principles, Tools, and Techniques. Available: http:// www.maqweb.org/techbriefs/tb49riskcomn.shtm [accessed October 7, 2009]. Daley, M.F., N. Liddon, L.A. Crane, B.L. Beaty, J. Barrow, C. Babbel, L.E. Markowitz, E.F. Dunne, S. Stokley, L.M. Dickinson, S. Berman, and A. Kempe. 2006. A national survey of pediatrician knowledge and attitudes regarding human papillomavirus vaccination. Pediatrics 118(6):2280-2289. Davies, P., S. Chapman, and J. Leask. 2002. Antivaccination activists on the world wide web. Arch Dis Child 87(1):22-25. Davis, T.C., D.D. Fredrickson, C.L. Arnold, J.T. Cross, S.G. Humiston, K.W. Green, and J.A. Bocchini, Jr. 2001. Childhood vaccine risk/benefit communication in private practice office settings: A national survey. Pediatrics 107(2):e17.

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 PRIORITIES FOR THE NATIONAL VACCINE PLAN Wakefield, A.J., S.H. Murch, A. Anthony, J. Linnell, D.M. Casson, M. Malik, M. Berelowitz, A.P. Dhillon, M.A. Thomson, P. Harvey, A. Valentine, S.E. Davies, and J.A. Walker-Smith. 1998. Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmen- tal disorder in children. Lancet 351(9103):637-641. Wilson, K., M. Barakat, E. Mills, P. Ritvo, H. Boon, S. Vohra, A.R. Jadad, and A. McGeer. 2006. Addressing the emergence of pediatric vaccination concerns: Recommendations from a canadian policy analysis. [see comment]. Can J Public Health 97(2):139-141.