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Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
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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

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
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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.

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
×

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.

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
×

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

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
×

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

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
×

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

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
×

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

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
×

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

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
×

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%

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
×

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

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
×

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

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
×

Issues Identified

Clinical:

  • Other diseases not covered by RECA seen in miners—cases of asbestosis found in miners with no other work history

Other:

  • How to reach miners who might have moved away (involves contacting extended families, miner organizations, and use of “word of mouth”)

Clinical:

  • Little primary or preventive care available internally to these populations

Other:

  • No feedback from Department of Justice, so they do not know where applications stand

  • Area is very rural and remote, and population does not have telephones or electricity, so followup must be by mail

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
×

HRSA Grantee, and Population Covered

Screening and Referral Protocols

Individuals Reached

The Arizona Radiation Exposure Screening & Education Program (AZRESEP)

“Serving AZ Downwinders and Uranium Mining Industry Workers”

Linda M. Nelson, MPH

AZRESEP Director

Mountain Park Health Center

635 E. Baseline Rd

Phoenix, AZ 85042

Covers uranium miners, millers, ore transporters, downwinders, and onsite participants with focus on the downwinder population

Standardized AZRESEP protocol handbook has been developed. All sites contracted with Mountain Park Health Center are required to follow protocol laid out in handbook. MPHC contracts with three additional main sites (Canyon lands Community Health Care in Page, AZ; North Country Community Health Center in Flagstaff, AZ; and Yavapai County Community Health Services in Prescott, AZ)

Basically, protocol is

1. Perform eligibility screening (through questionnaire)

2. Make appointment for patient (unless patient chooses to go to own provider for insurance reasons)

3. Provide patient medical and occupational history, focused physical examination, laboratory tests, and x rays as necessary

4. Provide patient written medical summary with copies of test results in 6 - 8 weeks in mail with recommendations for followup

5. If patient is part of AZRESEP clinical system, followup occurs onsite; if not, patient is referred to his or her own PCP for followup

Outreach contacts (face-to-face and telephone encounters):

2002-2003:110

2003-2004:886

2004-2005:307 (Quarter 1)

Medical screenings:

2002-2003:86

2003-2004:63

2004-2005:14 (Quarter 1)

Medical referrals:

2002-2003:2

2003-2004:14

2004-2005:0 (Quarter 1)

Educational activities (presentations and media):

2002-2003:48

2003-2004:107

2004-2005:14 (Quarter 1)

RECA eligibility assistance provided:

2002-2003:78

2003-2004:298

2004-2005:28 (Quarter 1)

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
×

Issues Identified

Arizona has high managed-care penetration, so we encounter problems with insurance plans in this state; most plans require that enrollee be associated with network of providers and have an established primary-care provider; if person with health insurance goes outside his or her network, the services rendered are not reimbursable, and patient is required to pay out of pocket for services

Many Medicare beneficiaries elect to enroll in managed-care plan as secondary coverage for Medicare-covered services. Even though AZRESEP sites use sliding fee schedule for uninsured patients, patients who have health insurance usually do not qualify for it; because AZRESEP sites are required to bill for services, some people have been deterred from coming in for any medical screening that they may have to pay for even if they have health insurance

Other identified issues have been that demand in Maricopa County for medical screening of RECA-eligible people has been lower than expected, and cost of implementing full-fledged marketing campaign in area is beyond realm of funding resources; we initially thought that high number of eligible people would reside in Maricopa County (even though it is not classified as RECA downwinder county) because of out-migration of people from northern Arizona counties, in-migration of people from surrounding states, and sheer number of people who live in Maricopa County (3,396,875) compared with the rest of Arizona (2,232,695); in last past quarter, print advertising has been taking place in Maricopa County with disappointing results; furthermore, prohibitive costs associated with media (especially radio and TV but also print) limit amount of media outreach and education possible with small budget

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
×

activities and tracking progress are typically not as straightforward for grants as for contracts; to the extent that standardization of messages, materials, and uses of federal funds is desired; we believe a contract mechanism offers more agency control than grant program.

The committee was concerned about standardization and accountability even for the present configuration of RESEP. If RECA moves to a national PC/AS mechanism for determining exposure and potential eligibility, even one involving the preassessment activities proposed earlier, RESEP audiences will expand geographically and change in demographics; similarly, HRSA’s responsibilities for RESEP screening, education, and outreach will grow. In our judgment, therefore, HRSA may do well to revamp the RESEP program in several ways. Some recommendations appear below, but we offer the following as a cross-cutting matter: The committee recommends that HRSA change its RESEP funding mechanism from grants to contracts.

HRSA might consider using a cooperative agreement mechanism instead of a pure grant program. In our judgment, that would not be a meaningful step, in that cooperative agreements are administered more like grants than contracts. We offer several reasons for our recommendation to move to a contract mechanism.

First, a contract vehicle would enable HRSA to standardize protocols for medical and compensational screening in accordance with the recommendations in Chapters 9 and 10. HRSA’s current grantees provide different (or different levels of) services to eligible populations, as documented in Table 11.1, although part of the explanation may be different amounts of grant awards. Nonetheless, to the extent that grantees’ goals and approaches differ, they risk inadvertently discriminating against some populations and for others. Such discrimination—insofar as these groups can be considered alike for purposes of RESEP activities, and however unintentional—is not consistent with appropriate use of public funds or with our understanding of the ethical principles that underlie RECA.

The committee would support advances that offered all populations timely access to the services appropriate for realizing RECA and RESEP goals. This is, in part, the implicit motivation for its recommendation about monetary coverage of screening, diagnosis, and treatment services for administratively eligible individuals. The basic activities of the entities that HRSA funds for RESEP need more standardization and supervision to be made consistent. A contract would provide this.

Second, a contract mechanism might help HRSA to expand and centralize attention on the content and literacy level of patient-oriented materials of all types (including non-English versions). Literacy and numeracy are problems even for the current grantees’ audiences, and the problems are likely to grow as additional populations not steeped in these issues for the past decade are drawn into the RECA program. We return to literacy and numeracy issues later.

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
×

Third, for similar reasons of standardization and efficiency, a contract vehicle is likely to help efforts to inform physicians, other clinicians, and other professional groups about RECA and RESEP (especially in previously uncovered areas of the country). HRSA can work with research or technical assistance firms and with academic institutions and other organizations to develop and test educational messages, in various media, and to create and disseminate appropriate clinical practice guidelines and protocols. HRSA might, for example, partner with the Agency for Healthcare Research and Quality (AHRQ) in commissioning systematic reviews of treatment options for these conditions and in disseminating information from the US Preventive Services Task Force on updated screening protocols for cancer and other relevant disorders.

Fourth, contracts provide a way for HRSA to begin and then maintain ongoing program evaluation of RESEP activities and services beyond what is now possible through annual grant renewals. Program evaluation itself does not appear to be an element of RESEP administration, and this is a matter of some concern. We can envision that Congress and the Department of Health and Human Services might wish to direct more attention to the effectiveness and efficiency of RESEP efforts as RECA itself becomes a more complicated program involving more diverse geographic areas.

In short, we believe that contracts will offer the most efficient and effective mechanism of administration, especially for any national program for which entities already involved in RECA-oriented and RESEP-like activities do not exist. The one possible exception is the Indian Health Service, which in principle could expand its reach to Native American populations outside the Southwest. Efficiency and appropriate oversight are more likely through a contract than a grant mechanism as the RESEP program expands to serve broader RECA purposes.

With respect to funding for HRSA for RESEP, we note that recommendations to move to a PC/AS approach for RECA for the nation as a whole markedly increase the size and scope of RESEP activities beyond the groups in the western and southwestern counties now eligible for RECA compensation. That may have nontrivial implications for RESEP’s overall costs. Some observers and policymakers may judge that the administrative costs to expand education and outreach programs to those who are at a very low level of risk (with attendant claims, perhaps in large numbers, from individuals who may not be granted compensation) are not in reasonable proportion to the gain. The committee believed that issues of costs (for RECA or for RESEP) related to its recommendations, although of considerable importance, exceeded its charge for this report, and so we do not explore RESEP programmatic costs further in this chapter.

CORE ISSUES FOR RESEP

At the public meetings in Arizona, New Mexico, and Utah, the committee heard many points that direct attention to issues that HRSA should address. As

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
×

already introduced, Table 11.1 (rightmost column) briefly note the numerous issues that grantees brought to the committee’s attention. Beyond these, many speakers and beneficiaries of RESEP services presented stories and data underscoring what the HRSA grantees said and raising yet other topics.

The major problems arose in four categories: knowledge deficits, inaccessibility, cultural sensitivity, and inequity. Some were discussed in earlier chapters. We refocus on them here in the context of information from the public hearings and other materials that affected groups and individuals forwarded to the committee.

Knowledge Deficits

Knowledge or information deficits in the RECA-RESEP context can lie in several domains: awareness, acceptance, assimilation, and use of materials. The general public and many persons potentially eligible for RECA can, at worst, be said (as of the time of preparation of this report) to be unaware of the RECA and RESEP programs; at best, they probably have not assimilated the details of the programs. Those generalizations are more applicable to a national program than to a program focused nearly exclusively on selected counties in several western and southwestern states. HRSA (with DOJ) will likely need to modify and expand educational efforts to address the awareness domain of knowledge acquisition.

Some members of the general public have difficulty understanding or completing the 25- page RECA application form, especially the necessary residence documentation. Such problems will increase if Congress legislates the committee’s recommendation for expanding the program through the PC/AS method and expands coverage of medical services for specified diseases to those approved for eligibility for compensation. As noted in earlier chapters, effective implementation of the PC/AS model may require that formal technical assistance be offered to individuals to use the dose and PC/AS calculators accurately (see Chapters 5 and 6). A single HRSA contractor might provide such assistance nationally either directly to individuals or to patient, volunteer, disease, or other advocacy groups.

HRSA may also need to address the preassessment activities suggested in relation to the committee’s first recommendation about moving to a PC/AS approach to compensation. This calls for the National Cancer Institute (NCI) or other appropriate agencies to make two determinations: (1) which diseases are likely to have a high enough probability of satisfying compensation criteria, thereby eliminating scenarios in which the dose to tissues and organs would be universally so low that processing RECA claims would be unwarranted, and (2) which population groups have incurred sufficient risk from fallout-related radiation exposure to warrant consideration for compensation. The committee expects this work to be made widely available to the US public. For that reason, HRSA may need to play an important role in disseminating information for the various audiences that need to be reached and in targeting outreach and education to

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
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populations that are especially affected by the determinations (that is, of being at very high risk or at very low risk of exposure).

Inaccessibility

Ease of Understanding

Given the cultural differences, remoteness and broad geographic nature of the regions to be reached, and the limited literacy (reading ability) and numeracy (quantitative literacy) of targeted populations, such traditional outreach methods as pamphlets and public service announcements are of dubious accessibility and thus of questionable value. The impact of the current educational and outreach efforts (such as public service announcements, brochures, and similar media for RESEP and RECA messages) has not been rigorously evaluated. The committee remains uncertain about the net benefits of those efforts in populations now targeted, let alone in much more diverse sets of people who may emerge in a PC/ AS-based national program.

Ease of Obtaining Services

Access to health care in the traditional sense (defined a decade ago by the Institute of Medicine as “the timely use of personal health services to achieve the best possible health outcomes” [IOM, 1993]) was often raised as an issue for the current RESEP program grantees and populations. Thus, physical inaccessibility to screening tests, timely referrals, and appropriate health care because of the expanse of the geographic regions covered may continue to pose problems for some populations possibly eligible for RESEP services or RECA compensation. The extent to which the problem may arise if the RECA program is extended through the national application of the PC/AS method is not clear, especially if administrative criteria must first be met. How access to care plays out will depend on the location of health care facilities, which are likely to be far more numerous (and accessible) in many parts of the country than in the present RECA states. It may also hinge on patterns of insurance coverage or eligibility for federal health programs, although the committee has recommended that RECA cover services related to screening (or complications of screening), diagnosis, referral, and treatment. Insofar as some “hot spots” are in relatively rural areas (albeit not as rural as some of the covered areas in the American Southwest), however, geographic inaccessibility may still present an obstacle to high-quality and timely services.

Cultural Sensitivity

In this section and later in this chapter, we use the issue of sensitivity to Native American culture as a prime example because the committee heard much

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
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testimony that such sensitivity was not always evident. However, the issue applies to the many different cultures of peoples exposed to radiation by the US nuclear-weapons programs.

Native Americans have a strong sense of being treated as “second-class citizens” at local treatment centers. The committee heard a good deal of testimony about apparent insensitivity to Native American traditions and medical practices. The committee notes that DOJ has apparently improved its practices as regarding documentation of residence, employment, and family relationships to permit more use of traditional (or unconventional) materials appropriate for Native American groups. The committee further addresses the use of affidavits for proof of presence or residence below.

Interactions across DOJ, HRSA, HRSA grantees, and future HRSA contractors with all target populations warrant review of issues of cultural sensitivity (including but not limited to literacy and numeracy questions). Expanding RECA will doubtless increase the need for attention to such concerns.

Inequity

The committee introduced ethical issues in Chapter 8 and wove these considerations into other chapters as well. Generally speaking, inequities are a major concern to the extent that like groups are apparently not treated alike. We note, however, that treating “unlike” groups dissimilarly does not raise an equivalent ethical dilemma.

Many representatives of groups that are not now eligible for RECA compensation spoke strongly about their sense of unfairness about the initial “arbitrary” selection of eligible geographic areas for RECA coverage. The committee understands their perception that a fundamental breach of ethical principles occurred and that it ought to be given great weight in considering their grievances. The basic reason is that they are “like” groups that have not been dealt with similarly. The PC/AS method of extending RECA eligibility nationally is an effort to redress some of these concerns.

DISCUSSION AND RECOMMENDATIONS

In this section, we examine further some of the issues introduced above and offer our recommendations for addressing them. We focus here on advising HRSA about education and outreach. In some cases, however, screening, considered in Chapters 9 and 10, reappears as a matter for further educational efforts and as a part of streamlining HRSA’s administration of RESEP. The issues presented here are, in the main, categories used earlier: knowledge deficits, inaccessibility, cultural competence, inequities, and screening. By far the most critical steps will be to overcome knowledge deficits in both patient populations and clinicians; second will be screening questions in the context of education and

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
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outreach. The committee recommends that the Department of Health and Human Services ensure that the content of public and professional educational programs be consistent across all entities that HRSA supports through its RESEP program.

Knowledge Deficits

Educational Needs Related to Patient Populations

Clinical Issues Making the RECA and RESEP programs better known to and understood by eligible populations is a major goal. It calls for a larger and better public education effort than we believe has been mounted to date. Although RECA stakeholders appear to be better informed than the general public about radiation issues and present law to remediate harm, one important need is to improve understanding of the nature and meaning of radiogenic disease (as dealt with in Chapters 4 and 7). Many conditions may have an etiology related to radiation exposure but also have competing causes that are not related to radiation exposure and may be more likely to be the true cause of a person’s illness. Many disorders, including many cancers, have no proven causal relationship with radiation exposure (as discussed in Chapters 4 and 7). In our view, these facts must be laid out before the public at large in language that will be broadly understood, given the literacy competence in this country.

To understand better the RECA eligibility process, potentially eligible persons must have a general understanding of the PC/AS method. This includes an understanding of the “uncertainty” associated with this method (see Chapter 5). Also important will be conveying the reasons that Congress sets criteria of eligibility for compensation at whatever points it eventually adopts. Chapter 5 of this report might be a source for HRSA or others to use in developing better, more standardized documents and materials for educational purposes, although we recognize that it is not written at an average level of literacy for the US population and would need to be simplified for broader use.


Literacy and Numeracy Low literacy in the United States (in any language, but conventionally considered English) is common. One typical test is the National Adult Literacy Study (NALS), which grades literacy in five levels (1 being lowest and 5 highest). A decade ago, about 90 million adults in the United States scored on level 1 or 2 on the NALS, which means that they have trouble integrating multiple pieces of information from a single document or finding two or more numbers and performing a calculation with them (Berkman et al., 2004; DeWalt et al., 2004). Both skills are critical to comprehending and using a PC/AS method; indeed, many daily activities today require literacy skills above level 1 or 2. Thus, low literacy must be taken into account in a broader RECA program; this requirement poses appreciable challenges for HRSA’s RESEP efforts.

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
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Numeracy is a companion construct to literacy, although in the United States it is less well understood and measured. Sometimes deemed quantitative literacy, it comprises the knowledge and skills required to apply simple operations of arithmetic, either alone or sequentially, using numbers embedded in printed material. Broadly, numeracy is the aggregate of knowledge, skills, and attitudes needed to perform mathematical calculations and manipulations, grasp measurement units intuitively, estimate known or unknown values, interpret and use mathematical and quantitative information, and think and express oneself effectively in quantitative terms. More prosaically, it is the ability to use mathematics at a level necessary to function effectively in everyday situations of school, work, and society. (For further definitional discussions, see Gal, 1995, and Saskatchewan Education www.sasked.gov.sk.ca/docs/policy/cels/el3.html#e13e10; accessed 12/21/2004).

The general US population is not especially numerate, when judged by questions related to probabilities (how many times will a fair coin flipped 1,000 times come up heads?) and percentages and proportions (converting a 1% chance of winning a lottery to 10 winners in 1,000 people winning that lottery, or converting a chance of winning a raffle from 1 in 1,000 to 0.1%) (Williams et al., 1995; Schwartz et al., 1997; Woloshin et al., 2001; Sheridan and Pignone, 2002). Sheridan and Pignone (2002) reported that 77% of first-year medical students answered three numeracy questions correctly, 18% answered two correctly, and 5% answered one or none correctly. In a study of mostly middle-aged women concerning understanding of screening mammography benefits, Schwartz et al. (1997) reported that 44% answered the coin-flip question incorrectly (generally underestimating the value); moreover, 46% of women were unable to convert 1% to a proportion accurately, and 80% were unable to convert 1 in 1,000 to a percentage.

Such findings call into serious question the ability of RECA populations to grasp the PC/AS concepts easily, let alone to interpret correctly the types of information that come from the dose and PC calculators. This is especially problematic because the population targeted for education in the PC/AS method may, indeed, be locations across the entire nation. In fact, setting the threshold or “cut point” and an acceptable level of uncertainty (for example, credibility intervals) for determining eligibility is a social or political, not a scientific, task. For that reason, affected populations may find themselves motivated to increase their numeracy to have more influence with national representatives on the issue if Congress amends RECA as advocated in this report. Education may be needed to help such claimants to interpret their own (or family members’) values correctly. That may in turn call for HRSA to arrange for technical assistance to make it happen.


Benefits of Information Easy-to-understand information about RECA, RESEP, and radiogenic cancers may provide reassurance to some individuals. Specifi-

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
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cally, they may be encouraged to learn that even though they had been exposed, not yet having developed a cancer to which the exposure may have contributed many years after exposure may mean that they never will develop it. Issues of age at exposure and the relationship between age and competing causes of cancer are dealt with in Chapter 4. Furthermore, reassurance may flow from educating both the public and health care providers that the relative risk of a radiogenic cancer (and therefore the likelihood that such a cancer will have been the consequence of an exposure to ionizing radiation) declines as time since exposure increases. The committee recommends that HRSA and all its grantees undertake an appropriately focused educational program explicating the limitations, the benefits, and the risks of medical screening for many RECA diseases.

In addition, people who know or believe that they were exposed through occupation or fallout from the US nuclear-weapons testing may come to a better appreciation of the disease to which they should be especially attentive. This involves both awareness of symptoms and choices about screening and lifestyle behaviors.

Finally, some people may expend much time, money, and emotion in pursuing campaigns for inclusion of “their” disease among those listed for compensation. If the public improves its understanding of the likelihood that radiation was not likely to have caused those diseases, some frustrating efforts that have little likelihood of payoff might be averted.


Claimant Applications The RECA-RESEP application process clearly needs to be more user-friendly and easily explained. It is a 25-page application (http://www.usdoj.gov/civil/torts/const/reca/claimform.htm). A question remains as to whether improving and simplifying the application process are responsibilities chiefly of DOJ or HRSA. Nevertheless, if this program is to be implemented effectively, any individuals deemed newly eligible for possible compensation must be made aware of and learn how to use the existing compensation program and its procedures most effectively.

To make the application process more user-friendly, storing all claims and, if possible, clinical information at a central location would be a useful innovation. Those reapplying would then not have to repeat the entire application process. Implicit in this chapter is that HRSA bears substantial responsibility for meeting these informational (educational and outreach) needs, but the committee suspects that many elements of DOJ’s administration of RECA could also be streamlined and improved. We do not address them here because DOJ program efforts were not a direct part of the committee’s charge.


Multiple Compensation Programs The multiple compensation programs are confusing to those who may be eligible not only for RECA compensation but also possibly (or alternatively) for other programs. For example, uranium workers are

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
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eligible for an additional $50,000 in compensation from the Energy Employees Occupational Illness Compensation Program Act (EEOICPA), but if an onsite participant were to apply to RECA and accept compensation, he or she could not then apply to EEOICPA for even the difference in compensation between the two programs. (See Chapter 2 and Table 2.4 for a more comprehensive review of different compensation programs.)

As part of HRSA’s outreach effort, however, and to complement whatever DOJ does in this regard, we believe that HRSA should make more information available to potential claimants on all compensation programs, especially the programs that offer both medical services benefits and monetary payments. HRSA should combine elements of all those programs in one consistent description that helps potential beneficiaries compare programs and understand the full set of benefits to which they might be entitled.

That might be done in several ways. For example, HRSA’s RESEP Web site could include more information about and links to relevant sites of other federal departments and agencies, such as the Department of Veterans Affairs and the Department of Labor. HRSA might also attempt to develop a simple triage system for guiding potential applicants to the compensation programs most appropriate for their situations. The committee did not explore these options in detail but did agree that a specific recommendation that HRSA act was justified.

The committee recommends that HRSA provide information to RECA populations about other radiation exposure compensation programs for which they might be eligible. The committee also recommends that an advisory organization should review all federal compensation programs related to radiation exposure to determine similarities and differences and that HRSA periodically convene representatives of all programs to address inconsistencies among programs and determine the effects of developments over time in radiation biology, risk estimates, legislation, and regulations.

Explanations and instructions must be at a level of reading ability appropriate for the target populations. Among the needs are getting and using information about the application process and obtaining help in using PC/AS dose calculators on the Web through the NCI or the National Institute for Occupational Safety and Health (NIOSH, through the Centers for Disease Control and Prevention [CDC]). This effort might be accomplished through some form of technical assistance as mentioned above.

The committee heard repeatedly that simple messages and clear instructions are critical. Complicated or incomplete messages and materials pose difficulties for many of the target populations and may induce frustration, anger, misunderstanding, and even mistrust. A related risk is that people will fail to obtain the benefits to which they are entitled. Thus, taking literacy and numeracy into account is a paramount requirement. Of special concern are materials in languages other than English—most likely Spanish, but also other Native American languages.

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
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The above pertains essentially to print materials: newspaper articles, flyers and brochures, and the like, including Web-based information. HRSA and others should also give similar attention to anything conveyed through the broadcast media.

HRSA’s role is to support development of such materials. We believe that the agency should provide guidelines about or assistance in creation and production in accordance with contemporary expectations in the health communications field. Taking the several points above into account, the committee makes several recommendations for HRSA activities. Most important in this context, the committee recommends that HRSA ensure that all public informational materials are written so that members of target populations can understand their contents.

All groups from whom the committee heard recommended that HRSA, the agency’s grantees or contractors, and other interested parties use all types of media to reach out to potentially affected populations. Media in this context appears to mean both traditional print and broadcast channels: newspapers, bulletins, flyers, and similar print vehicles and radio and television media, including both commercial and cable outlets. Mailing materials may be the most direct way to reach members of some populations that lack easy access to broadcast media (at least in their own languages); in some cases, this might need to be accomplished simply through bulk mailing to “resident” or “occupant.” We believe, in addition, that populations that have computer access and are computer literate may be well served by expanded use of Web-based outlets. Such Web sites should include all appropriate hyperlinks across sites.

Similarly, engaging all types of community-based organizations is critical. They will differ by locality, but the overall conclusion is unassailable. Among the types of organizations mentioned were local health departments and social-services departments, philanthropic entities (for example, local or regional foundations), and faith-based organizations (for example, church organizations or religious membership groups). Advocacy groups, whether related specifically to the RECA program—such as downwinder societies, mining unions and networks, veterans’ networks, and tribal organizations—or to disease organizations, such as local chapters of the American Cancer Society and similar national groups, should be approached. Finally, service organizations, such as groups headed by local commercial leaders, may be useful partners.

Apart from local efforts or those coordinated through entities other than HRSA, we believe that HRSA can do much more with its Web site. That will be critical if RECA becomes a national program, but even in its present state the agency’s Web site is neither informative enough nor user-friendly. This chapter notes many informational messages and materials that HRSA might post on its Web site.

The committee suggests that HRSA expand its RESEP Web pages beyond the minimal elements of information found on the four current pages. Such

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
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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

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
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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

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
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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.

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
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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

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
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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

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
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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

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
×

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.

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
×

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

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
×

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.

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
×

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.

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
×

The committee recommends that HRSA:

  1. Use a standardized method to develop outcomes-based goals and objectives for appropriate planning and assessment.

  2. Identify and evaluate the cost and effectiveness of steps to remove barriers to program implementation.

  3. 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:

  1. Provide information about the existence and availability of RECA and RESEP.

  2. Explain in clear and simple terms the likelihood of receiving compensation.

  3. Put the low risks of radiogenic cancer in context to reassure exposed individuals.

  4. 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.

  5. 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.

Suggested Citation:"11 Education and Outreach." National Research Council. 2005. Assessment of the Scientific Information for the Radiation Exposure Screening and Education Program. Washington, DC: The National Academies Press. doi: 10.17226/11279.
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The Radiation Exposure Compensation Act (RECA) was set up by Congress in 1990 to compensate people who have been diagnosed with specified cancers and chronic diseases that could have resulted from exposure to nuclear-weapons tests at various U.S. test sites. Eligible claimants include civilian onsite participants, downwinders who lived in areas currently designated by RECA, and uranium workers and ore transporters who meet specified residence or exposure criteria. The Health Resources and Services Administration (HRSA), which oversees the screening, education, and referral services program for RECA populations, asked the National Academies to review its program and assess whether new scientific information could be used to improve its program and determine if additional populations or geographic areas should be covered under RECA. The report recommends Congress should establish a new science-based process using a method called "probability of causation/assigned share" (PC/AS) to determine eligibility for compensation. Because fallout may have been higher for people outside RECA-designated areas, the new PC/AS process should apply to all residents of the continental US, Alaska, Hawaii, and overseas US territories who have been diagnosed with specific RECA-compensable diseases and who may have been exposed, even in utero, to radiation from U.S. nuclear-weapons testing fallout. However, because the risks of radiation-induced disease are generally low at the exposure levels of concern in RECA populations, in most cases it is unlikely that exposure to radioactive fallout was a substantial contributing cause of cancer.

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