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APPENDIX A 25 Page 7, Section II.B.3.a, last paragraphâThis reveals a misconception that screening tests will allow the diagnosis of disease. False-positive results should be considered. Page 8, Section II.B.3.b, last paragraphâWhat about HIPAA? Page 8, Section II.B.3.b.4âEducation about the health risks posed by the several radiologic and other hazards possibly encountered by members of the covered populationsâand their management (which is not peculiar to conditions that could have a radiogenic component)âis important for them, their families, and all groups involved in the various aspects of health-care delivery in these communities. Page 8, Section II.B.4âEducation should include education about, for example, false-positive results and risks of screening, and must be balanced. Page 8, Section II.B.6âWhy should quality assurance of follow-up care (vs quality assurance of screening) rest with RESEP and not caregivers? Also HIPAA. Page 9, Section II.B.8âData Collection: There is no mention of the privacy and confidentiality issues involved in the collection, maintenance, storage, and retention of medical and personal data. Who will âownâ the data? Who may have access to it? Are they likely to be used for purposes other than an individual patientâs medical care, such as research? These are issues likely to be of concern to participant groups, including the Indian Nation, whose âbuy inâ to the program may be critical to its success. A consent form is mentioned, but none is included in the protocol. Will this be a standard document or will grantees develop and use their own? Grant applicants should provide a data-management plan. Data about the effectiveness of the educational program should be collected. That entails substantial risk. If a grantee is measured by how many people get screened and there will be strong pressure to get more people screened, and that could lead to more positive results (decreased specificity and increased false positives) even if it is to patientsâ detriment. COMMENTS ON SCREENING PROPOSALS During its November meeting, the committee reviewed and assessed the six proposals that were submitted to and funded by HRSA. We could not make specific comparisons between proposals because they were general and lacked detailed descriptions of their objectives and protocols. However, we have developed the following general comments: 1. There seems to be overlap of the populations served. For example, several are proposing to serve Navajo nations. How can overlap be prevented and how can there be assurance that eligible groups will not be neglected or omitted?
APPENDIX A 26 2. The proposals seemed to address primarily uranium miners and millers, although several included other eligible categories. It would be beneficial to encourage more participation from health-care organizations that serve the downwinders areas. 3. An active program using available lists of workers from employers, unions, and so on, in contacting the affected populations may be effective in identifying eligible individuals. 4. How can there be assurance that each of the proposals provides the same level of service related to outreach, education, and medical services? 5. The request for proposals should have a set of specific requirements that are based on the legislation including knowledge of the risks and prevalence of radiogenic diseases. Applicants should address how they intend to satisfy each specific requirement. 6. On the basis of some of its deliberations during the first two meetings, the committee had the impression that many persons would be served better by ensuring that their general health is improved and maintained than by focusing on diseases that have a low probability of being radiogenic or that are otherwise compensable.