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Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program 11 Education and Outreach This chapter addresses several aspect of the committee’s charge from the Health Resources and Services Administration (HRSA) about education, outreach, and screening in the context of the Radiation Exposure Compensation Act (RECA), which is administered by the Department of Justice (DOJ) and HRSA’s responsibilities for the Radiation Exposure Screening and Education Program (RESEP). We take into account here the implications of the recommendations set forth in earlier chapters. Because of their inseparable nature in efforts of this sort, we use the terms “education” and “outreach” somewhat interchangeably. We focus on the needs of three broad target audiences: the general public, a variety of specific populations defined by occupational or residential exposure (such as uranium miners and people who may have been exposed to radiation from fallout from the US nuclear-weapons testing), and health care providers. We briefly review our understanding of current efforts by the six HRSA grantees and the issues and problems with the existing RECA and RESEP programs that participants and HRSA grantees raised at information-gathering meetings in late 2003 and 2004. HRSA originally had six grantees but defunded one after one year and added another, so the number of grantees remains at six. We examine these issues and their ramifications for HRSA in the context of moving to a “national” RECA program grounded in a probability of causation/ assigned share (PC/AS) approach (see Chapters 5 and 6). We use the term national to refer to expansion of eligibility to persons in all US counties and all US territories whose calculated PC/AS for at least one compensable condition
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Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program meets or exceeds whatever threshold and credibility limits Congress or other bodies may recommend. As explained earlier, the committee does not intend to imply that all persons, in all counties, are automatically eligible for RECA compensation; rather, the committee’s recommendations regarding screening turn in part on proof of administrative eligibility (including calculation of an individual PC/AS for a RECA-compensable disease). Insofar as earlier recommendations have direct ramifications for HRSA and its RESEP program, we make suggestions here for their implementation. Finally, we outline a planning framework that may help HRSA to strengthen its education and outreach programs. Our recommendations and examples for implementation of proven educational intervention strategies are aimed at overcoming barriers to effective outcomes-based education programs that could be adapted for future RECA and RESEP programs. CHARACTERISTICS OF THE RADIATION EXPOSURE SCREENING AND EDUCATION PROGRAM Education is one of nine core activities expected of RESEP grantees. Grantees have told HRSA that they need guidance in public education and outreach mechanisms to those at risk or experiencing symptoms as a result of exposure to radiation (letter from HRSA to committee via Dr. Isaf Al-Nabulsi dated May 6, 2004). In developing its Request for Applications (RFA), HRSA asked potential grantees to develop strategies to expand and enhance public outreach and education in the following six categories: The possibility of disease. Symptoms. The potential need for diagnostic evaluation. The availability of screening for disease through RESEP. The possibility of compensation through RECA. The need for documentation of medical and occupational history if RECA claim is filed. Although the RFA speaks to symptoms, as explained in Chapter 9 screening is a term that usually applies to asymptomatic individuals. If patients are symptomatic, the perspective is one of diagnosis and treatment, if indicated. The main elements of RECA were reviewed in the several earlier chapters that dealt with the history of the program, compensation under the current program, and new information and science that will influence future developments. Chapters 9 and 10 examined the screening aspects of the RESEP program. We comment briefly here on the audiences, responsibilities, activities, and funding of the HRSA’s RESEP effort.
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Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program Audiences Obvious targets of RECA and RESEP educational and outreach efforts are the public at large, various specific populations defined by occupational or residential exposure (such as uranium miners and downwinders [that is, those who may have been exposed to radiation from fallout from the US nuclear-weapons testing]), and health care providers. The RESEP legislation does not specify populations for education and outreach, but HRSA implicitly adopted this framework, and we apply it here. Responsibilities With respect to its scope of services and diseases, RECA and especially the amendments in 2000 that mandated the RESEP program can be read narrowly as focusing on radiogenic diseases (and secondarily on some nonradiogenic pulmonary and renal conditions after occupational uranium exposures). In fact, HRSA has expanded the focus to involve education for persons at risk of or experiencing symptoms of any disease secondary to the radiation or other exposures that made a person eligible for compensation. Thus, HRSA has gone beyond screening per se, although the committee was changed with examining screening. Specifically, HRSA requires its RESEP grantees to convey information about the possibility of disease, symptoms, screening and diagnosis, RECA compensation, and the need to document both medical and exposure (such as occupational) history. The committee agrees that those are, in broad terms, appropriate subjects of education. Activities Table 11.1 briefly describes the populations and geographic areas that the current six HRSA grantees cover. It outlines their screening, referral, and other protocols and documents various activities. Table entries were based initially on materials and presentations at a committee information-gathering meeting in Window Rock, Arizona. Grantees later provided further or updated information. Thus, the table has data covering the period spring 2004 to early March 2005. Grantees carry out a considerable array of outreach and educational efforts. They occur through form letters and various types of mailings, articles in local newspapers, radio and television spots (for example, public service announcements), and education and followup by registered nurses for instruction and health information. The efforts and products vary widely among the grantees, and at least one grantee does little or no broad outreach through broadcast and print media because of costs. We could not determine the extent to which HRSA itself or the grantees standardize messages delivered through different media (print or broadcast) or either centralize or share responsibility for material and message development.
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Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program The numbers of people reached through education and outreach efforts (not including medical contacts) apparently vary widely, but stating an overall range is difficult because grantees do not count contacts similarly. One grantee does statewide outreach, so the population contacted (in theory) is in the millions; others count contacts in the hundreds to thousands. Table 11.1 also notes some clinical outcomes, such as numbers of persons with abnormal tests or possible diagnoses. Those data, too, vary markedly among grantees in both types of variables recorded and numbers (or percentages). Other than these types of process measures, neither HRSA nor grantees provided evidence of the outcomes of the activities. In particular, we received no information on patient health outcomes as a result of these efforts. In addition, no data on programmatic outcomes, such as better understanding of RESEP or the RECA program or improved access to either program, were provided. Grantees did not appear to be using any outcomes-based educational model. Finally, the far right column of Table 11.1 presents the many issues that grantees identified in the public meetings or later communications. Some fit well with points that the committee addressed as part of its overall charge. An example is the concern from the Indian Health Service grantee (Navajo Area Health Service) about tests used to document presence of compensable diseases that are not appropriate screening tests, which underscores the distinction made in Chapters 9 and 10 between medical screening and compensational screening. Other issues lay well outside the committee charge per se, but some were heard from more than one grantee. Examples included concerns with attorney fees, lack of feedback to grantees from DOJ on outcomes of compensation claims, and resumption of nuclear weapons testing at the Nevada Test Site. Yet other matters, such as concerns with lack of public or private coverage or other means for paying medical costs of referrals and treatment, were ones that the committee discussed and used in arriving at policy and program recommendations found in other chapters of this report. Funding HRSA implements RESEP through a grant mechanism. The RESEP RFA had a fair amount of detail about desired or required activities. Nonetheless, a grant, by definition, permits awardees to fashion programs according to their own preferences and capacities, which are not necessarily related to the populations that they serve or the diseases in question. That the grantees would differ substantially in operations, therefore, is hardly surprising. Another element of a grant mechanism is a relative lack (at least in comparison with contracts or cooperative agreements) of accountability for activities and allocation of resources except perhaps annually or only upon renewals, which may involve even longer periods of time. HRSA defunded an original grantee after 1 year because of nonperformance. The basic point is that overseeing
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Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program TABLE 11.1 HRSA Grantees: Populations and Areas, Screening, Education, and Outreach Activities; Issues HRSA Grantee, and Population Covered Screening and Referral Protocols Individuals Reached Navajo Service Area Radiation Exposure Screening and Education Program Bruce B. Struminger Navajo Area Health Service Department of Internal Medicine NNMC, Box 160 Shiprock, New Mexico Covers miners, millers, and Nevada Test Site downwinders in New Mexico, Arizona, Colorado, and Utah (essentially Navajo Nation populations) Some post-1971 miners included Focused on testing for RECA compensation (“disability/compensable illness”) program Send various form letters to primary-care providers (for downwind exposure) and to patients (after chart review to identify RECA diagnoses) Referral and treatment: Indian Health Service (IHS) or outside contracted specialty services Followup: RESEP clinic or patient’s IHS primary-care physician Outreach contacts: ~1,500 Medical encounters: >1400 Educational activities: >100 Eligibility assistance provided: >1200 Of total uranium workers screened (n >1300 ) since 10/02:323, positive arterial blood gas 186, positive spirometry; > 181 meet RECA medical qualifications, but not all can prove eligibility because of difficulties documenting work history Have identified > 2000 individuals (Navajo and Hopi) who may meet RECA qualifications as downwinders Have contacted > 100 of these individuals to assist them with identification of the appropriate documentation (from their IHS records) needed for their RECA claims
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Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program Issues Identified Clinical: Arterial blood gases and chest x rays are essential for compensation proof, but are not appropriate screening tests Latent tuberculosis of concern (reactivation of latent tuberculosis infection related to silicosis) Many patients with comorbidities Other: No feedback from Department of Justice on who has been awarded compensation; IHS cannot apply for compensation and patients cannot get transportation covered New regulations change the parameters for qualifying FVC and FEV1, using ethnic-specific lower limits of normal rather than previously qualifying FVCs and FEV1s ≤ 80% predicted. This change reduce number of RECA qualifying spirometry examinations Necessity of “B” readings—special radiologic interpretations evaluating for evidence of silicosis derived from black lung program—which are increasingly hard to get IHS is going digital and no NIOSH guidelines exist for readings of digital images Use of unregulated, private consultants or lawyers who overcharge claimants Consider amending RECA simply to require proof of exposure without proof of illness or illness severity, both for social justice reasons and given imperfection of current testing regimen, which requires that physicians and nurses compromise Hippocratic Oath to “do no harm” given that potential harm caused by medical testing rarely leads to therapeutic options (no treatment exists for pulmonary fibrosis) Consider amending RECA to allow the use of affidavits for proof of presence or residence
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Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program HRSA Grantee, and Population Covered Screening and Referral Protocols Individuals Reached St. Mary’s Hospital and Regional Medical Center Teresa Coons, PhD Mercedes Cameron, MD St. Mary’s Saccomanno Research Institute 2530 N 8th Street Suite 100 Grand Junction, CO 81506 Covers Colorado and southeastern Utah Navajo areas; Wyoming (uranium miners) Screening focused on “whole person,” not just compensable diseases Extensive medical, occupational, and residential history (but no invasive tests for initial screening unless indicated on work-history or other clinical grounds) Followup within St. Mary’s network; Much RN educator instruction and health information and recontact every 6 months Data as of 11/30/04:425 individuals screened so far Of those screened: 5% had abnormal oxygen saturation test, but 70% had abnormal arterial blood gasses 69% eligible for Medicare or Medicaid 7% have no insurance Remainder generally have third-party insurance 90% are male ~69% are ≥ 65 years old ~90% are non-Hispanic white ~88% are former uranium industry workers (miners, mill workers, and ore transporters) 327 non-contrast computed tomographic scan of chest completed; 49% abnormal and needing followup 331 patients have been referred for additional diagnostic evaluation or treatment
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Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program Issues Identified Clinical: Value of screening these populations just for RECA cancers and other diseases when use of resources might be better justified for providing more complete health care More complete examination protocol may lead to identification of radiation exposure-related conditions that are unknown or underestimated; this is important opportunity with RESEP population that should not be missed Relationship between renal disease and diabetes for populations that center sees Other: RECA-eligible populations are aging Area is very rural, so transportation is issue (although people are accustomed to coming to Grand Junction for other reasons) Patient mistrust of “government” studies or services in some cases (Colorado Plateau study or other reasons) Expansion of eligibility for RESEP program to post-1971 miners or other groups not included in RECA legislation (but having same exposures) might provide some sense of “justice” to those not included in RECA without amending legislation Consider expansion of downwinder category to other geographic regions with documented iodine-131 deposition (NCI study data)—for example, areas in Colorado, New Mexico, and Idaho where deposition levels were similar to those found in current “downwinder” counties
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Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program HRSA Grantee, and Population Covered Screening and Referral Protocols Individuals Reached St. George and Dixie Regional Medical Center Rebecca Barlow, RN, BSN, OCN, CPON Carolyn Rasmussen, RN, BS, OCN, CPON Dixie Regional Medical Center 544 SO 400 East St. George, Utah Covers southwestern Utah and the tristate area of southern Utah, Arizona and Nevada Would like to expand to hold clinics quarterly in Cedar City, Utah, and in Colorado Screening protocols “very similar” to those of other RESEP sites, but screening mostly of downwinders (92%) because of the proximity to geographic area related to Nevada Test Site Provide much cancer screening education, giving written material, to all patients, as well as general healthy life information to those with identified diseases (hypertension, diabetes, and so on) Have been seeing patients since March 2004 Outreach contacts —Newspaper ads/articles—radio spots/interviews: 276 —Television: 3 —Pamphlets distributed: 2,920 —Presentations: 20 —Fliers distributed: 3,360 —Interview for documentary on effects of nuclear testing: 1 Number reached by all outreach (total for all sources): >29,300,000 people exposed to our outreach attempts through all media Total patients scheduled: 716 Total patients screened: 595 RECA information given to patients and/or general public: about 6,521 Patients sent to RECA specialist for assistance with claims: about 106 RECA claim form given to potential claimants from office: about 322 Claimants paid: unable to find out from Department of Justice which claimants have been compensated; will send out 6-month survey to try to capture that information Patients served: —Male 46% —Female 54%
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Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program Issues Identified Clinical: Screening tests covered by grant monies because Medicare does not reimburse for “screening” examinations Uranium miners, millers, ore transporters also get arterial blood gas tests, screening spirometry, two-view chest x ray, and CMP Total medical referrals: 1,145 Referrals Made: Colonoscopy: 320 Mammography: 237 Prostate-specific antigen: 143 Pelvic exam: 62 Pap smear: 52 EGD: 15 Thyroid ultrasonography: 5 Testicular ultrasonography: 4 Breast ultrasonography: 3 Miscellaneous (for instance, to primary-care physician for non-RECA ailments): 151 Abnormalities Found: Rectal mass or positive stool: 49 Suspicious skin lesion: 47 Breast Nodules: 24 Dysphagia: 2 Prostate nodules: 9 Thyroid nodule: 5 Testicular nodule: 5 Pulmonary nodule: 1 Prostate cancer: 1 Other: Potential of reopening Nevada Test Site (underground “bunker bombs”) of huge concern for all residents in area Give list of attorneys in area that help people with RECA compensation, but explain to all potential claimants that attorneys are restricted in what they can charge and are not required People in tri-state area are used to coming to St. George to receive medical care, do shopping, and so on Oncology nurses for 10 years, and have worked with families consumed by cancer and its diagnosis Biology of cancer is explained by “two-hit method”—atmospheric exposure was a “hit” exposure to people that does not go away; the younger the patient when exposure occurs, the greater the chance for late effects Concerned with interim report about screening not harmful, biggest way to catch cancers early; supported by American Cancer Society Feel some monies should be made available to fund followup of abnormal screening findings in high-risk people who have low income and are uninsured
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Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program HRSA Grantee, and Population Covered Screening and Referral Protocols Individuals Reached New Mexico Radiation Exposure Screening and Education Program, University of New Mexico Health Sciences Center Karen Mulloy, DO, MSCH and Elizabeth Kocher Department of Internal Medicine MSC10 5550, 1 University of New Mexico Albuquerque, NM 87131-0001 Covers: all persons in New Mexico except for those members of the Navajo Nation (areas including Grants, Laguna Pueblo, Acoma Pueblo, Gallup, etc.) Screening protocols are focused on the diseases linked with uranium mining and milling. Complete medical and occupational history taken on all individuals. Chest x-ray with B-reading, spirometry, oximetry, and focused physical exam completed on everyone. BUN, creatinine, UA completed on ore transporter & millers. ABG ordered when medically indicated. CT scan ordered if no PCP and medically indicated Followup with PCP and/or RESEP clinic Outreach contacts: 398 Medical encounters (screened individuals): 218 Educational activities: 48 Eligibility assistance provided: 115 Medical referrals: 99 Received compensation: 3 Do not hear back on most cases whether accepted or denied Utah Navajo Health System RESEP Stephanie Singer, MD P.O. Box 130 Montezuma Creek, UT 84534 Covers the Utah Strip of the Navajo Nation through 3 community health centers and collaborates with St. Mary’s Northern Navajo Medical Center, and Dixie Regional Screening protocols are the same as those used by St. Mary’s RESEP ~2450 people reached (via presentations, mailings, or direct contact) ~395 people screened, of those screened: 15 positive results 15 people referred Regarding compensation: 3 people received compensation ~16 applications submitted, but no decision yet ~35 applications are in process
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Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program expansion should include many of the messages and materials issues raised throughout this chapter, taking into account any expansion of RECA with respect to eligible populations and a shift to a PC/AS approach for new or existing localities (including the impact of preassessment findings). The committee also suggests that the Web site be internally hyperlinked more efficiently than it is now. Finally, the committee suggests that HRSA create an expanded set of hyperlinks to other federal agencies (particularly to all the relevant Web sites for DOJ, NCI, CDC, and NIOSH) and national stakeholder organizations in this area. One element of the committee charge concerned adding new diseases to the current RECA list, and this was explored in Chapter 7. Given currently available epidemiologic, radiobiologic, and dosimetric evidence reviewed there, the committee did not recommend any additional diseases be added to the current list of RECA-compensable conditions. Thus, no issue arises for RESEP as to compensational screening for any new diagnoses. In Chapter 9, however, the committee suggested that HRSA may want to consider screening for depression, in health care settings with appropriate quality-of-care programs and adequate referral or follow through when needed; this is in accord with recommendations of the US Preventive Services Task Force for adult populations. In addition, the committee noted that it considers in utero exposures to be included in determining eligibility. HRSA and DOJ will need to explain and publicize these decisions and changes thoroughly through outreach to organizations, improved Web sites, better print or other materials of appropriate levels of literacy and numeracy, and revised application forms and other protocols. Yet another challenge arises in relation to the committee’s recommendations that RECA cover the costs of screening (and its complications) and appropriate referrals and treatment for RECA-compensable diseases for all individuals who have established eligibility for compensation. If Congress acts on this recommendation, then HRSA almost certainly will need to develop some educational program for both patients and providers to explain how these provisions will work. Educational Needs Related to Clinicians Clinical Issues Facts now emerging about the long-term effects of radiation exposure on mental and emotional health must be emphasized in primary and specialty care fields. Psychologists, psychiatric social workers, and other appropriate community workers also need to be educated on these issues if they are to provide appropriate guidance and care to patients and (potentially) family members. Another challenge for clinical audiences may be educating them about the applications of PC/AS methods by which their patients may need to determine potential eligibility for compensation. This is especially pertinent to the extent that documenting administrative eligibility for RECA compensation is a prerequisite for requesting compensational screening (as discussed in Chapters 9 and
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Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program 10). As explained in Chapters 5 and 6, developing the information for a PC/AS calculation for an individual requires the presumption of disease. We see a high likelihood that patients or their families will turn to physicians for explanations and assistance on PC/AS questions, and we are not convinced that the medical profession, on balance, has a solid understanding of statistical approaches in general or for the RECA program in particular. HRSA may need to take special steps to reach out to the medical profession with technical assistance or educational materials geared to the needs of physicians (or their office staffs) about the meaning and application of PC/AS calculations. The material in Chapter 5 that serves as the PC/AS primer will be an important place for HRSA (or professional societies themselves) to start. As noted earlier, the PC/AS primer information (Chapter 5) is one starting place for HRSA and professional societies. Inasmuch as RECA would not be the first compensation program to use PC/ AS, HRSA might investigate effective education efforts on the part of EEOICPA and any other radiation compensation programs, here and abroad, that might be good bases for its own efforts. Screening Issues Physicians asked about their own role in RESEP. They asked whether they were expected to use routine screening and checkups with emphasis on radiation-related diseases, to provide examinations with nonroutine tests to determine eligibility for compensation, or both. They also asked about what cancers should be considered for examination. Clinicians questioned the value of screening populations for RECA cancers when resources might be better used and justified for providing more complete health care. Health care providers—health plans, health care organizations, physicians, nurses, and medical social workers in particular—need reliable, up-to-date information. We were generally impressed with the level of professional knowledge and commitment among the current HRSA grantees on this score, although some questions remain (see below). Any expansion of RECA and RESEP, however, will generate a significant need for provider education on several fronts. The first is simply a better understanding of both programs tailored to the health care interventions and assistance that such professionals may need to give to their patients and families. As implied in Chapters 9 and 10, screening alone requires that much be done to keep the medical profession up to date, apart from the need for better information about important distinctions between medical and compensational screening. Clinicians should ensure that all persons to be screened are aware of and comprehend the tradeoffs of the benefits of screening and the risks it poses. This is especially important in the context of compensational screening, when few health benefits are likely to accrue (but harms may well) and the likelihood of successful claims is low. Moreover, as RESEP has been implemented so far, the variation in practices for referral, followup, diagnosis, and treatment is considerable. HRSA may have
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Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program to spell out more precisely than it has so far what providers outside the southwest grantee areas (or the Indian Health Service) are expected to do. The recommended move to a contract mechanism, in which more procedures can be standardized and centralized, is meant to make it possible to meet such needs more efficiently and effectively. The preassessment recommended by the committee may provide useful guidance as well. Finally, turnover is one important factor in reaching health professionals who are affiliated with institutions that care for RECA populations. HRSA grantees emphasized difficulties posed by changes in physicians, nurses, or other personnel. Among the intractable problems was providing professional education and training for RECA over and over. We see no obvious way to avoid the problem, but we note it as one that HRSA needs to take into account in future programmatic activities. Educational Issues and Mental Health Little or no epidemiologic work appears to have been done on issues related to mental and emotional status and the exposure and continuing concerns of miners and downwinders and their families. Nonetheless, the lack of empirical work cannot disguise the range of psychiatric problems they describe, allude to, or evince. However, the committee could not amass evidence of documented emergence of these conditions as a result of exposure or of sustained symptoms that would provide a direct, causal link between complaints and diagnoses identified today and exposure that occurred decades ago. For that reason, we could assemble no convincing arguments that these conditions should be added to the list of RECA-compensable disorders. We conclude, however, that prompt provision of accurate information about radiation exposure and its consequences may ameliorate the psychologic consequences (anxiety, depression, post-traumatic stress disorder, chronic environmental stress) of a catastrophic exposure. Although the exposures covered by RECA were not catastrophic accidents, it may now be the case, many decades later, that providing full and truthful information can help to diminish the psychologic burdens that RECA downwinder or other populations may exhibit. The committee recommends that HRSA undertake an enhanced program of education and communication about the risks posed by radiation exposure for people who may have been exposed to radiation from fallout from US nuclear-weapons testing. If Congress adopts the PC/AS approach to determine eligibility for compensation, education about the nature of the calculations may afford additional opportunities to inform downwinders and others about the relatively small magnitude of the risks. In short, as noted in Chapter 9, the committee emphasizes the need for greater educational efforts to help clinicians, patients, and families recognize mental health problems and obtain appropriate referrals and services for them.
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Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program Inaccessibility The committee heard in several ways that HRSA and others must be especially cognizant of the specific needs or requirements of local populations and the lack of resources in some places. That is true especially for groups that have little access to television (meaning that public service announcements may be unavailable to them). Another barrier is the high geographic dispersion of some of the populations of concern (in rural and frontier areas, including reservations for Native American). Language is a further complicating issue. Reaching Native American populations now (such as members of the Navajo Nation) may be problematic insofar as English is not their first language. Moreover, expanding RECA nationally raises the probability that messages and materials need to be rendered into Spanish (or perhaps other languages). For complicated subjects—such as RECA, PC/AS concepts and procedures, and services available through RESEP—adequate translations (taking literacy into account) may be problematic. Cultural Sensitivity The RECA and RESEP programs should work with local minority populations to understand these types of concerns and to ensure that equitable services are provided in culturally sensitive way. As already noted, the Native American groups in the current RECA areas of the southwest reported many instances in which they felt that the programs were not adequately responsive to their traditions and medical practices. HRSA needs to ensure that clinicians working in the RESEP programs are trained to understand cultural preferences and to develop ways to incorporate into their programs the nontraditional medical practices and life views of the Native Americans and of other groups and cultures (Blackhall et al., 1995; Carrese and Rhodes, 1995; Gostin, 1995). Owing to the complexity of the application process, one step that HRSA might take is to have its contractors engage case managers or triage personnel with special training and capabilities in providing education, information, and services in culturally appropriate ways. Inequity The committee heard repeatedly about equity issues. Native Americans stated repeatedly that they received fewer accommodations than the majority population to meet their needs and situations. They and other groups were concerned about the extent of fallout from the nuclear tests under consideration and the arbitrary nature of using geographic boundaries to determine eligibility. If RECA is amended, as recommended earlier, to extend eligibility through a PC/AS mechanism across the nation, a substantial public education effort will be needed in at least the states and counties (localities) that had high levels of
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Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program fallout. The suggested preassessment effort may help to identify areas warranting early and high-priority attention. A related public education and information effort should be directed at making the RECA program known to people in these localities. A question remains as to whether this is a responsibility chiefly of DOJ or of HRSA, but one way or another people potentially eligible to apply for compensation—all those outside the southwestern areas now eligible—must be told of the existence of the compensation program. If this is a DOJ duty, such information must include explanation of the existence of the RESEP program. In addition, people must be told how they can find and access needed information, forms, and the like. To all that must be added explanations and instructions—at a readability level appropriate for the targeted populations—for getting information about the application process. Some potential applicants may need help using the PC/AS dose calculators on the Web through NCI or CDC. Screening Issues Revisited Somewhat problematic for the committee was the testimony from physicians regarding screening and their role in it. One issue was confusion about medical vs compensational screening; another was the number and types of tests (for example, arterial blood gases) that were performed on all patients because they were potentially eligible for RECA and whether this constituted good medical practice. Excessive Testing Concerns Grantees reported disquiet about some of the diseases being screened for and about the amount and complexity of the diagnostic testing required for potential RECA eligibility. Their concerns are well founded, as laid out in Chapter 9 about the potentially adverse effects of using multiple tests. The committee here reiterates that the several recommendations made in Chapter 9 for addressing these issues are relevant for improving RESEP activities. Screening for Medical or Compensational Purposes Clinicians associated with the existing HSRA grants expressed confusion about their screening role. Physicians’ traditional view of screening typically does not include examining a patient for compensatory reasons. Chapters 9 and 10 differentiated between medical screening and compensational screening. Compensational screening involves specific tests that HRSA set out for radiogenic disease; these are not traditionally undertaken in routine medical screening but are required to establish eligibility for RECA compensation. The distinction needs to be much clearer to clinicians working in the RECA program. A term
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Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program other than screening, perhaps compensation examination, might be developed for examinations that are undertaken strictly to determine RECA eligibility. Although a potential for harm exists in all screening programs, considering such harm is especially critical for decisions that the public and clinicians make about screening tests for many RECA-compensable diseases. Little or no medical benefit appears to accrue from such screening to offset the risks of harm. In deciding whether to undertake such compensational screening, exposed individuals and their clinicians have to weigh a small medical risk against a perhaps even smaller possibility of receiving compensation under RECA. In the committee’s view, clinicians must inform patients of the possible harms whether they are providing medical screening or screening for compensation. HRSA needs to acknowledge to clinicians that it recognizes that screening tests are not perfect and that not all diagnoses can be medically certain. The committee advocates that, even for compensation examinations, screening activities be undertaken only when the tests and procedures in question are supported by credible scientific evidence and when the expected benefits outweigh the risks. We suggest in Chapter 9, consistent with our concerns in Chapter 8 for the underlying ethical concerns at stake, that shared decision-making models be researched. Here, we advocate that they be understood and implemented by clinicians in helping RECA stakeholder populations to make decisions regarding screening. EDUCATIONAL PROGRAM PLANNING AND IMPLEMENTATION So far, this chapter has discussed the issues identified by the general public, grantees, and the committee. We focus here more on the need for a planning framework and an outcomes-based educational model that HRSA could adapt for its future RESEP programs. Theoretical Background The discussion and recommendations outlined in this chapter are based on longstanding health-education and social-science concepts and theory (Lewin, 1935). A multidisciplinary body of research and activities labeled health education has grown since that time. Numerous groups have applied these concepts to help individuals to improve their own health and to assist health care organizations in raising the health status of their communities. Health education encompasses a broad range of behavioral and organizational change strategies that are based on research and application by psychologists, sociologists, anthropologists, experts in marketing and communications, clinicians, and health care management professionals. Health education programs typically involve an intense evaluation of a well-defined target population; they examine knowledge, attitudes, goals, perceptions, social status, power
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Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program structure, and cultural traditions that affect health (Derryberry, 1960). Health educators are concerned not only with individuals and their families but also with the institutions and social conditions that impede or facilitate achievement of optimal health (Griffiths, 1972, p. 13). Health education principles have guided social movements and other broad health-related programs. The work dates back to the pioneering research by Lewin (1935) on group processes in individual change. Six broad categories of factors—knowledge, personal, interpersonal, institutional, community and public policy—are typically the focus of health educators. The following discussion is derived from this body of research (McLeroy et al., 1988). Framework To build a sustainable program, HRSA and its grantees or contractors may usefully consider a planning framework to guide their activities and to evaluate and improve them over time. For example, the planning framework depicted in Table 11.2 uses a seven-step process and is similar to the traditional “diagnosis and treatment” model often used by clinicians and managers. For each new initiative that a HRSA grantee or contractor undertakes in relation to its RESEP responsibilities, this type of guide specifies clear project objectives, target audiences, and other steps necessary to develop an accurate “diagnosis” of what will need to be done to accomplish specific program objectives. The guide helps users to identify specific knowledge, personal, interpersonal, organizational, community, and public policy barriers that need to be addressed to implement effective outcomes-based, education programs. Once organizations complete such a plan, their staffs and other users can create grids that focus on the barriers to be addressed and the strategies necessary for effective implementation. Table 11.3 illustrates the approach. Table 11.4 defines groups of barriers that HRSA and others should evaluate in the RESEP context. They are important to understand because they can interfere with attaining the program’s objectives. One general problem with the use of barrier-driven strategies is that the full range of barriers is typically not evaluated; a second is that educational deficits are overemphasized. Thus, health educators emphasize that all barrier categories should be examined. Categorizing barriers provides a method for developing specific corrective interventions that would improve the chances of effective implementation of a program. For example, if knowledge deficit barriers exist among particular physicians, implementing corrective educational strategies for these physicians should be effective. In contrast, if organizational barriers exist, educational interventions and appropriate health care professionals would likely not be helpful or cost-effective, but designing strategies to change the organizational problems would likely be productive.
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Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program TABLE 11.2 Framework for Systematic Planning of RESEP Activities 1. Identify specific proposed objectives, suggested changes and measurable outcomes. 2. Identify specific target audiences in terms of RECA-RESEP objectives, including not only those specified by legislation (such as miners, downwinders, and ore transporters) but also clinicians, health-care organizations, and other staff that may need to make changes in methods and operations. 3. Assess target audiences’ ability and desire to make changes; ”stages of readiness” approach is relevant at this point. 4. Determine potential barriers to accomplishing the outcomes. 5. Recommend specific and customized intervention strategies to remove the barriers and determine the cost effectiveness of doing so. 6. Initiate barrier-specific strategies and remedial interventions. 7. Evaluate results and impact and make changes as needed. Require assessment plans. TABLE 11.3 Barriers to Effective Education and Outreach Activities and Implementation of Related Programs Barrier Classifications Definitions and Examples of Barriers Knowledge deficits and skills Sequential steps include awareness, agreement, assimilation, application, and integration Includes simple “lack of knowledge” or outdated clinical skills. Examples are knowledge deficits about indications or contraindications of medications, about current recommendations or clinical-practice guidelines (such as lack of knowledge of the benefit of treating patients who have silicosis and a positive skin test for tuberculosis with antituberculosis medications such as isoniazid) about use of tests and procedures considered obsolete, and about technical training, skill, or expertise (as in poor surgical or invasive test techniques) Provider and patient personal barriers Includes the provider’s feelings, beliefs, values and experiences. For example, a patient develops hepatitis while receiving isoniazid therapy, and this affects a physician’s decisions regarding use of the therapy for future patients Provider and patient interpersonal and psychosocial barriers Includes interpersonal interaction barriers, for example “turf battles” and inability of providers to relate effectively with patients or with other providers Organizational barriers and lack of organizational support Includes organizational, structural, and system limitations, including those related to resources and administrative support, for example, lack of standing orders or incomplete standing orders for acute stroke in the emergency room; and process issues with implementing physical-therapy or occupational-therapy orders Community barriers Includes existing community resources, public attitudes, and broader general support for a proposed new program Public policy barriers Includes existing local, state or federal policies (such as Medicare payment schedules) that may interfere with program implementation
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Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program TABLE 11.4 Framework for Addressing Educational and Outreach Barriers Knowledge Barriers The general public and persons potentially eligible for RECA and RESEP either lack awareness or have not accepted or assimilated RECA and RESEP information. Therefore, they are not fully using the program. Potential Effective Intervention Strategies HRSA grantees are undertaking a variety of knowledge enhancement programs to raise awareness of the RECA program. They include media programs, distribution of flyers and brochures, physician and attorney mailings and a broad array of community wide programs. They also are using not only awareness strategies but also acceptance strategies such as the use of influential local leaders and local community organizations. In many instances group and individual interventions may be necessary. They also are attempting to develop effective programs using influential Native American leaders and organizations. These activities need to be augmented by more customized programs for people with low literacy or who lack access to local media. The general public has reported difficulty completing the RECA application forms. DOJ officials need to examine the current application process and work with grantees to address particularly troublesome barriers to efficient claims processing. Personnel are needed to triage potentially eligible claimants to the various programs available to them. Additional personnel with appropriate training in cultural sensitivity are needed to assist claimants. Accommodations are needed for people with low literacy or numeracy, visual or other physical disabilities, or emotional and mental health problems. Some Native Americans had particular difficulty completing the application form, especially the proof-of-residency documentation. These types of problems will increase if the geographic scope of the program is expanded. This issue is being addressed by DOJ. Personal Barriers Some Native Americans prefer nontraditional medical practice and are fearful and suspicious of Western medicine. Potential Effective Intervention Strategies Local Native Americans who have influence with these individuals should meet one-on-one to explore these fears, legitimize them, and try to develop a plan that would reduce the fears and allow these individuals to participate in the RECA programs. RECA staff should be involved in this process and try to customize their services to these individuals.
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Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program Interpersonal Barriers Some Native Americans are suspicious of local health care providers. Potential Effective Intervention Strategies RECA and RESEP programs should be designed to recognize the cultural traditions and make accommodations to integrate cultural traditions and local leaders as much as possible in the workup and treatment of Native American and other groups that use non-traditional medical techniques. The Navajo population does not trust local clinicians and community agencies. They feel that they are treated as second-class citizens in accessibility and equity of local health care services. They also believe that their unique needs and traditions are not addressed or respected. RESEP organizations should activate influential local Native American and other appropriate community organizations to facilitate an opportunity for groups to identify and express their concerns and to develop specific objectives and plans to improve relationships between Native Americans and local populations. All three town meetings involved people who felt that they had not been heard and “that’s what they wanted.” Similarly, such organizations should activate local organizations and influential leaders to offer people opportunities to identify and express their concerns, have them legitimized, and ensure that an action plan is developed. Simply reiterating concerns can become a perpetual, unproductive process. Organizational Barriers Local clinics lack resources and personnel to provide the definitive tests (such as arterial blood gases, chest x rays, and spirometry) apparently required to determine eligibility for compensation. Potential Effective Intervention Strategies Federal, state, and local health-care organizations should help to build capacity to provide resources capable of evaluation of covered cancers. Community Barriers The targeted populations often live in rural, geographically diverse, and isolated areas. Those factors add complexity to any outreach program, particularly for followup and implementation of clinical and public-health programs. Potential Effective Intervention Strategies Contractors cannot rely exclusively on media-based health education. Contact through local community groups and leaders must also be considered. Resources and methods for broader outreach to very small groups need to be found, although the cost effectiveness of such a “small” approach will need to be considered. Public Policy Barriers Resources may not be adequate and available to continue and possibly Potential Effective Intervention Strategies Involved federal agencies and legislative representatives need to evaluate the RESEP expand the RESEP program. program regularly in light of recommendations in this report.
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Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program The committee recommends that HRSA: Use a standardized method to develop outcomes-based goals and objectives for appropriate planning and assessment. Identify and evaluate the cost and effectiveness of steps to remove barriers to program implementation. Train staff to identify specific barriers to implementation and develop strategies to overcome them. CONCLUSION The challenges of outreach and education even for the current RESEP program are substantial. If the RECA program is expanded as described in earlier chapters, the target audiences will be larger (for example, clinicians, health care organizations, special exposed populations, and the general public) than expected when the RESEP program was created. The barriers (knowledge deficits, interpersonal, personal factors, organizational, community factors, and public policy) to reaching program objectives are broader than originally understood and will be even more problematic if and when RECA expands nationally but they can be addressed with methods consistent with the health education research literature. In particular, HRSA and its RESEP grantees or contractors should adopt and implement outcomes-based planning and implementation approaches. The following overarching specific changes are indicated. HRSA must: Provide information about the existence and availability of RECA and RESEP. Explain in clear and simple terms the likelihood of receiving compensation. Put the low risks of radiogenic cancer in context to reassure exposed individuals. Clearly explain the potential risks posed by medical testing and the relative lack of improvement in health outcomes gained by early detection of many RECA-compensable diseases. Explain the proposed PC/AS method both to exposed individuals and to the clinicians who may be guiding their decision-making. The committee recognizes the expanded nature of such an effort and offers its suggestions and recommendations in the hope that they will be helpful to future RECA and RESEP programs and populations.
Representative terms from entire chapter: