Keywords

adolescent health, evidence, policy, science

 

Authors

  1. Resnick, Michael D. PhD

Abstract

The gap between scientific evidence and its application poses profound challenges to adolescent healthcare researchers, educators, and advocates. These challenges are compounded by the alliance of political power with social and religious ideology, the consequence of which is the distortion and undermining of scientific evidence and inquiry. This article, based on a keynote presentation to the Center for Health Promotion Research Conference on Adolescent Health, describes examples of such interference and the need for effective response to those who deliberately seek to widen the gap between evidence-based approaches to adolescent health, as well as the implementation of such knowledge in programs and policy.

 

Article Content

IN this daylong convening by the Center for Health Promotion/Disease Prevention Research in Underserved Populations, we have responded vigorously to a challenge that, sadly, has become a hallmark of the early 21st century in the United States: the gap between evidence and policy related to promoting and protecting the health and well-being of young people. This lamentable chasm between what we know and what we do is widening and deepening, for reasons that are at once deliberate and insidious.

 

I invite scholars, policy professionals, practitioners, educators, and advocates to boldly face this challenge by considering magic wands, bricks in the toilet tank, and time machines, each in turn.

 

We all remember the magician's dramatic word: abracadabra, as the woman in red satin suddenly disappears, or a flock of doves bursts from a hat with the wave of the wand: Abracadabra!! This is probably derived from the Aramaic: "avera kedavera"; translated in this way: "I will create as I speak."1(p1060)

 

These ancient ones had an insight, reflected in their use of this term. They understood that for something to be made real, we have to name it, to say it, almost like the Velveteen rabbit that becomes real in that wonderful children's story, because "the little boy said it was so," and in so doing, the toy rabbit is transformed into a living creature.

 

We see this reflected in our understanding of the requisite 4 steps for effective public health mobilization. In the Encyclopedia of Public Health, Associate Editor John Last explains that public health action requires that first, we name the problem, then articulate its causes and contributing factors, delineate the factors that can prevent, reduce, contain, or control the threat to health, and finally mobilize political will and social resources to enact what works.2 In this formulation (likely grounded in an acute disease/contagion model but broadly applicable), the naming of the problem is the essential prelude to effective action.

 

In this Herculean process of moving what we know into programmatic and policy enactment, we have come to understand that it is nearly fruitless to identify something as scientifically meritorious and worthwhile and then expect that, abracadabra, it will be so. When it comes to moving evidence into direct application, it seems that the magic wand is not enough. There is another requisite element to bridge that great divide between evidence and policy, and that is what political scientists have long referred to as agenda building.3

 

Ask any group of healthcare professionals who are old enough to remember these questions: How many of you in the early 1970s put a brick in the toilet tank? Why did you do that, and why don't you continue to do that now? And those old enough to remember will tell you that around the time of the first Earth Day, the conservation of water became a prominent national agenda item. People understood that the simple displacement of water achieved by putting a brick in the toilet tank could literally save millions of gallons of water per day. They will further explain that while subsequent plumbing and manufacturing standards led to low-consumption toilet tanks, the main reason they stopped keeping the brick in the tank was because the issue had faded from view. This is something that psychologists have described as the issue-attention cycle,4 whereby issues rise to the top of national or local agendas, then fade, and sometimes reappear.

 

Examples abound. In the January 2007 State of the Union address, increasing access to health insurance reappeared as a national agenda item, if not for the entire population, then particularly for children. National health insurance, as well as population-level coverage by insurance plans, was a national issue back in 1910 under the leadership of Teddy Roosevelt's Bull Moose Party. National health insurance was even promoted by the American Medical Association until a conservative change in leadership in 1920. This faded as an issue, and reemerged a half-century later during the Johnson and Nixon administrations.5 It cycled out of public attention again, and reemerged in the 1990s during the Clinton healthcare reform initiative. Clearly, the mere presence of a persuasive body of evidence that declares a program, policy, or intervention to be effective is insufficient to move it into application. Evidence must be coupled with effective education and advocacy and the crafting of relationships with persuasive individuals and organizations, so that single voices can swell into a strong and irresistible chorus. Organizers instinctively know this; advocates and lobbyists routinely incorporate this insight into their work.

 

But the challenges of moving evidence into action do not stop there. If we could board the proverbial time machine and move back in time, just 10 years, our discussion of the chasm between evidence and policy, the gap between what we know and what we do, would logically focus on the strategies and tactics that have traditionally been effective in translating scientific evidence into policy. We would discuss case examples where scholars joined with advocates to advance evidence-based agendas, such as early adoption within Minnesota of later school start times for adolescents, based on sleep research and persuasive testimony from teens, teachers, and parents. We might discuss the supplementation of food with folate to prevent neural tube defects, where researchers united their voices with parent advocates. We would focus on tools for effectively gathering and reporting scientific evidence, such as systematic evidence reviews that have led to insurance coverage for smoking cessation programs by a growing number of state Medicaid programs, Medicare, and by the Department of Veterans Affairs.6

 

Each of these examples of translation of evidence into policy occurred-not because the researchers announced abracadabra, here's the evidence, it is so; but through the mobilization of influential voices, and the cultivation of relationships with decision makers that helped to build the agenda for change.

 

But we now find ourselves in a different time, far removed from the ethos of just a decade ago. As professionals committed to building the agenda for evidence-based approaches to the public's health in general, and young people's health in particular, we are facing obstacles far more insidious than a populist suspicion of intellectuals and scholarly work. To be sure, there is a longstanding American skepticism about science and intellectuals (classically described in Richard Hofstadter's 1963 Pulitzer prize winning work of nonfiction Anti-Intellectualism in American Life7). But this skepticism toward science, which contributes to delays in the translation of evidence into policy, has been supplanted by a far more systematic approach to undermining the adoption of scientific evidence, an approach that is promoted at the highest levels of government and regulatory authority.8 This includes manipulation of scientific review processes by the staffing of review panels with ideologically motivated nonscientists, the distortion or suppression of scientific reports, the altering and censoring of scientific informational Web sites, and the intimidation of scientific investigators.9,10

 

According to the authors of a growing number of published articles, reports, and position papers on both subtle and overt interference with scientific research, most illustrative among them Politics and Science in the Bush Administration, prepared for Representative Henry A. Waxman and the US House of Representatives Committee on Government Reform,9 Santelli's 2006 article on politics, science, and abstinence-only education10 (both of which are extensively cited in this article), and the July 2007 House subcommittee testimony by former Surgeon General Richard Carmona, the undermining of scientific inquiry and evidence and suppression of public discussion, are apparent in multiple areas. This includes the study of agricultural pollution, threats to the Arctic National Wildlife Refuge, the protection of the nation's wetlands, education policy, global warming, lead poisoning, missile defense, advertising of prescription drugs, breast cancer research, workplace safety, stem cell research, emergency contraception, sex education, substance abuse, and population-level health education and health promotion.8-10

 

Without question, academics, practitioners, and advocates have long lamented the meandering pathway between the creation of credible scientific evidence and the implementation of that evidence in programs, policy, and practice. However, the current administration has created unprecedented obstacles against the movement of scientific evidence into direct application. Ironically, it was President George H.W. Bush who stated that "[n]ow more than ever, on issues ranging from climate change to AIDS research [horizontal ellipsis] government relies on the impartial perspective of science for guidance."9 President Bush's administration has skewed this impartial perspective, generating unprecedented criticism from the scientific community and from officials who once led federal agencies. As Dr Carmona described it in his House committee testimony, the Bush administration typically has made decisions on substantive public health issues based only on political considerations rather than scientific bases.8

 

The administration's interference with science reveals 2 common patterns and 3 broad strategies. In this first common pattern, there is a focus on issues such as abortion, abstinence, and stem cell research that have active right-wing constituencies that support the president. Second, there is a focus on issues such as global warming or workplace safety that carry significant economic consequences for large corporate supporters of the president.9 The 3 strategies that interfere with science by using it for ideological purposes include (1) manipulation of the composition of scientific advisory panels; (2) suppression or distortion of scientific information; and (3) interference with scientific inquiry.9,10

 

ADVISORY COMMITTEES

As noted in the journal Science, advisory committees are "the primary mechanism for government agencies to harness the wisdom and expertise of the scientific community in shaping the national agenda for both research and regulation."11(p703) Selection for participation on advisory committees is typically the result of broad recognition in the field, typically through the publication of research in peer-reviewed journals, participation on grant review panels, site visits, and other forms of professional service that contribute to and reflect the perceived credibility of scientists by their peers. The Federal Advisory Committee Act requires that federal committees be "fairly balanced in terms of the points of view represented" and provide advice that "will not be inappropriately influenced by the appointing authority or by any special interest."12

 

However, as widely noted in congressional, scientific, and general media reports, the current administration has repeatedly appointed people with strong industry ties and limited, if any, scientific credentials and currency, appointed individuals with little or no content expertise who support right-wing ideological agendas, populated advisory committees with proindustry appointees, and, on the basis of political litmus tests, opposed appointment or reappointment of qualified experts as recognized by scientific peers.9,10 Once in place, these scientifically ill-qualified individuals are able to advance politically and religiously motivated agendas under the credible moniker of their appointed status. Such appointees have been identified across such diverse governmental units as the Food and Drug Administration, the Centers for Disease Control and Prevention (CDC), the Office of Population Affairs, the Federal Emergency Management Agency, the President's Advisory Council on HIV/AIDS, and the National Human Research Protections Advisory Committee.9,10

 

SUPPRESSION OR DISTORTION OF SCIENTIFIC INFORMATION

While manipulation of the composition of scientific advisory committees has evoked scientific objection for several years, there has been even stronger objection to the censoring and fabrication of scientific information that had been regarded as critical to understanding complex scientific matters, including the selection of programs and curricula that are effective in reducing risky behaviors and promoting health and well-being. The Waxman report documents numerous examples of the administration providing inaccurate and incomplete scientific data and recommendations to Congress, the addition of scientifically unsubstantiated data to public information Web sites, altering or suppressing information from agency reports that is inconsistent with administration-supported political or ideological agendas, and the elimination of key information, especially about reproductive health, from communications with international organizations including the United Nations.9

 

The July 2007 testimony by former Surgeon General Richard Carmona to Representative Waxman's House Oversight and Government Reform Committee specifically described his prohibition against speaking or issuing reports on numerous contemporary health issues such as stem cell research, emergency contraception, sex education, mental health, and international health. He described, for example, how "top officials delayed for years and tried to 'water down' a landmark report on secondhand smoke. Released last year, the report concluded that even brief exposure to cigarette smoke could cause immediate harm."13

 

INTERFERENCE WITH SCIENTIFIC INQUIRY

As detailed in the Waxman report, the present administration has obstructed scientific research by threatening political scrutiny of projects that are of concern to social conservatives. This includes the use of "extreme audits" that examine, sometimes repeatedly, every expenditure made on a targeted federal grant. In recent years, these audits have been specifically directed at grants listed on the so-called National Institutes of Health hit list, which included grants on sensitive topics such as sexual and reproductive health, sexual orientation, and prostitution. (Some grants supporting studies conducted in international settings were also included on this list that ostensibly had nothing to do with these sensitive topics but were assumed to be covertly studying aspects of sexual and reproductive health.) This list was circulated in Congress and displayed on the Web site of a watchdog group called the Traditional Values Coalition that mocked the scientific basis for these peer-reviewed, approved, and funded studies, and described them in terms that strongly distorted their scientific rationale and public health utility.

 

In addition, the Bush Administration has undermined outcome assessment, both by creating easy-to-reach performance measures for politically favored programs (especially in the area of abstinence-only education) and by eliminating programs that identify effective initiatives that conflict with the Bush Administration's ideological agenda.9 Specifically, the administration has consistently supported the view that sex education should teach "abstinence until marriage as the only acceptable standard of human sexual behavior"14 and not include information on other ways to avoid sexually transmitted diseases and pregnancy.10 Former White House Spokesperson Ari Fleischer explained at a press briefing on January 27, 2003, that "[horizontal ellipsis] from the President's point of view he has long made the case that abstinence is more than sound science, it's a sound practice, that abstinence has a proven track record of working."15

 

In its vigorous support of an "abstinence-until-marriage" agenda, however, the Bush Administration has consistently distorted scientific evidence about the content and characteristics of effective sex education curricula, including never acknowledging that abstinence-only programs have not yet convincingly demonstrated their ability to reduce sexual activity, teen pregnancy, or sexually transmitted diseases.9,12 (This includes repeated assertions that abstinence-until-marriage interventions 'do work' despite the lack of such evidence in the long-awaited [and long-delayed] April 2007 Mathematica evaluation of 4 Title V/Section 510 abstinence education programs.)16 Instead, the Department of Health and Human Services has changed performance measures for abstinence-only education to make these programs appear successful as well as censored information on effective sex education programs.9

 

Let's examine each of these in turn:

 

In November 2000 under the Clinton Administration, the Department of Health and Human Services developed outcome measures to assess the extent to which abstinence-only education programs were achieving their intended purposes, including reductions in the "proportion of program participants who have engaged in sexual intercourse" and the birth rate of female program participants.14 In short, these were behavioral measures.

 

In late 2001, however, the Bush Administration replaced them with a set of indices that failed to include any form of meaningful behavioral outcomes. Rather than documenting pregnancy or sexual behaviors, these measures assessed session/program attendance and the attitudes of teens at the end of the educational intervention, including the "proportion of participants who indicate understanding of the social, psychological, and health gains to be realized by abstaining from premarital sexual activity."17

 

A generation of program evaluation literature has clearly established that intention is not synonymous with behavior, and the persuasive demonstration of changes in behavior (as well as attitude) comes from longitudinal designs utilizing a time frame that is sufficient to assess intermediate and long-term outcomes of interventions. The Bush Administration's standards for measuring the success of abstinence-only programs have not specified any minimum follow-up period. The consequence, as noted in the Waxman report, is that performance measures seem to be constructed to produce the appearance that scientific evidence supports abstinence-only programs when, in fact, the best evidence at present does not.9

 

In terms of the censorship of scientifically valid information, many health educators and adolescent healthcare professionals utilized the CDC's Programs That Work Web site that identified sex education programs that have been found to be effective in rigorous scientific studies.18* In 2002, the 5 "Programs That Work" were characterized as comprehensive sex education curricula; none were "abstinence only." Without scientific justification, the CDC abruptly ended this initiative and erased information about these demonstrably effective sex education programs from its Web site.19 (Fortunately, other organizations such as the Guttmacher Institute, ChildTrends, Inc, and the National Campaign to Prevent Teen Pregnancy continue to disseminate updated information about effective sex education programs as well as the scientific criteria used to assess these programs.)

 

To be clear, the censoring of scientific information has gone well beyond suppression of information about effective sex education programs for young people. Many social conservatives have long opposed government efforts to support the use of contraception. In the last several years, some have claimed that condoms are not effective against sexually transmitted diseases and have urged federal agencies to adopt this viewpoint.20 Under the Bush Administration, scientific evidence on the effectiveness of condoms has been suppressed or distorted to reflect this conclusion. This is why the field of sexual and reproductive health provides among the most compelling examples of the ideological, philosophical, and religious forces that prevent the application of what we know to what we do at considerable cost in terms of human morbidity, mortality, unnecessary suffering, and expenditure of resources.

 

In global terms, provision of effective contraception for the more than 200 million women who lack such access would, in and of itself, prevent approximately 23 million unplanned births, 22 million induced abortions, and approximately 14,000 pregnancy-related deaths annually.21 The contribution of family planning and evidence-based sex education to reductions in unplanned pregnancies and sexually transmitted infections is already well established, drawing upon years of domestic and international research.22-25 But in the administration's public statements, this evidence is dismissed or ignored, and Web-based materials are altered to match the beliefs and positions of interests that oppose evidence-based approaches to sex education and reproductive health.

 

As an example, in October 2002, the CDC replaced a comprehensive online fact sheet about condoms with a fact sheet lacking crucial information on condom use and efficacy. The original fact sheet, titled Condoms and Their Use in Preventing HIV Infection and Other STDs, included information on the proper use of condoms, condom effectiveness, and studies demonstrating that condom education does not promote sexual activity. It described that "a World Health Organization review [horizontal ellipsis] found no evidence that sex education leads to earlier or increased sexual activity in young people"26 (a fact already well established in Kirby's Emerging Answers, a 2001 review of effective sex education programs).22 The revised fact sheet (entitled Male Latex Condoms and Sexually Transmitted Diseases) omitted instruction on condom use along with information on the effectiveness of various types of condoms. It emphasized condom failure rates and the effectiveness of abstinence and deleted the previously present evidence demonstrating that sex education does not result in increased sexual activity.27

 

The State Department's Agency for International Development (USAID) provides another example of Web censorship, focused on the effectiveness of condoms. As of February 2003, the USAID Web site included 2 detailed documents on condom effectiveness. The document "The effectiveness of condoms in preventing sexually transmitted infections" stated: "Latex condoms are highly effective in prevention of HIV/AIDS" and "Public and government support for latex condoms is essential for disease prevention."28 The document "USAID: HIV/AIDS and condoms" also stated that condoms are "highly effective for preventing HIV infection." It called condom distribution a "cornerstone of USAID's HIV prevention strategy."29

 

The USAID then substantially altered its Web site. The Effectiveness document became unavailable. The document "USAID: HIV/AIDS and condoms" notes that only "condom use can reduce the risk of HIV infection" and "[w]hile no barrier method is 100 percent effective, correct and consistent use of latex condoms can reduce the risk of transmission of HIV and some other STIs."29

 

The examples above represent but a few of the many instances of interference, distortion, and censorship that are inconsistent with the advance of scientific knowledge and its application to the health and social needs of young people. In fact, even without these impediments to the conduct of scientific inquiry and the dissemination of credible, scientific information, the obstacles to moving evidence into policy are formidable. And they always have been. Remarkably, scientific evidence is not even necessary for the promulgation of policy, made abundantly clear by expensive investments in programs that have no credible evidence about improving health or reducing the risky behaviors that threaten young people's health and well-being. Certainly, we see this in the widespread use of sex education curricula that have not been rigorously evaluated,22 or that have failed to demonstrate their ability to change or prevent destructive adolescent behaviors, as evidenced recently by the Mathematica evaluation of Title V abstinence programs.16

 

We see this in other fields as well, such as substance use prevention, and violence prevention, where interventions that lack evidence are nonetheless bought and paid for, often with taxpayer's money, and put into application.30 The DARE program is a well-researched example of the former, where the effects of what has been the most widely used drug prevention program in the United States are far smaller than those of other recommended interventions.31 The well-known "Scared Straight" violence prevention initiative, involving visits inside prisons by juveniles at risk for delinquency, has been extensively used in numerous countries, despite repeated evaluations that have demonstrated that the intervention can produce actual increases in violent, acting-out behaviors.32 Both of these programs have strong political advocates as well as constituents who financially benefit from the promulgation of these programs. They comprise, using the words of Michelle Goldberg in her description of the abstinence-until-marriage movement, an industry.30

 

That is why we have an obligation to do more than know the evidence. Scientists must be skillful and practiced in responding to these attacks on science, and become ever-more adept at communicating complex information to broad audiences (beyond that of scientific peers) that conveys what we have learned from credible, rigorous scientific research about meeting the needs of young people. This obligation includes a broad array of scientist/scholars. Information censorship, suppression, and manipulation cross-cut multiple disciplines and domains of inquiry (as described, for example, in House oversight testimony and meticulously documented by such organizations as the American Civil Liberties Union,33 the American Academy for the Advancement of Science,34(p6) the federal government's General Accounting Office,35 and the Union of Concerned Scientists, among others).36 Professional organizations across scientific disciplines can alert their members to these (and other) watchdog and oversight entities. Position papers and policy statements from professional organizations can both educate members about attacks on science and amplify individual voices to the level of organizational expression on behalf of many thousands of members, for purposes of monitoring, advocacy, and protection of the integrity of scientific inquiry, knowledge dissemination, and application. Many professional organizations have already embraced such actions as part of their responsibility to their own constituents as well as the general public, but some have not. The unprecedented interference with science as we have witnessed and experienced it makes a compelling case for action, not to be relegated to the fringes of our collegial, professional organizations.

 

In addition, for many scholars and scientists who are based in academic settings where there is already an educational/professional socialization component to their work, there needs to be reflection and redefinition of what constitutes professional responsibility to guard against the subverting of scientific inquiry and the misapplication of scientific knowledge. At this time, there are scholars who simply do not regard this kind of vigilant monitoring and advocacy as consistent with their training and self-concept as academicians. Sadly, the pervasiveness of interference with science makes this voluntary disregard of events perilous for the future of scientific inquiry.37

 

We are fortunate that in the field of adolescent health, for those involved in training the next generation of interdisciplinary adolescent healthcare professionals, there are already longstanding mechanisms, supported for 30 years by the Maternal and Child Health Bureau, for providing predoctoral and postdoctoral leadership training to advanced learners in nursing, psychology, public health, nutrition, social work, and medicine. This transdisciplinary leadership training ensures that graduate and postgraduate learners have mentored opportunities to hone their skills in research and advocacy (including skills in public speaking and working effectively with the media), embracing the multiple roles as a researcher, educator, practitioner, and advocate as integral to their work in adolescent health.38

 

Advancing such an agenda as the responsibility of scientist/scholars is very challenging, especially in these times. This is why we joined together as an interdisciplinary conference, to share ideas, to discuss strategies, and get to know each other. When we return to our communities as researchers, educators, advocates, and practitioners, it is essential to be able to communicate these ideas about the needs of adolescents, the evidence about effective approaches to promoting healthy youth development, to adults who may not understand young people, may not like them, or feel very comfortable with them. We must be persistent and persuasive in our presentation of the evidence and not shrink from controversy when we have robust evidence to support us. We must be persuasive about adolescent health strategies that are supported by the evaluation data, programmatic and evaluation experience, and understand well the misinformation and manipulation of scientific knowledge that challenges our best efforts at dissemination of scientifically grounded information. Otherwise, the decision makers who place ideology before science will dominate, and do so to the detriment of our youth.

 

This is the kind of imagination and capacity we need. Our youth deserve this from us; and we cannot afford to do otherwise.

 

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*The CDC has discontinued Programs That Work Web site and is considering a new process that is more responsive to changing needs and concerns of state and local education and health agencies and community organizations. [Context Link]