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“We’re invisible in the data. We can’t make people believe we need more services if we don’t have data to back us up.”
Credible scientific knowledge is considered essential to all goals in this Blueprint, from establishing appropriate standards of health care, to training health care providers, to revising financing structures, and improving the capacity of individuals and their families to protect and maintain their health. For example, the lack of population-based data on prevalence of MR and the health status and service needs of this population impedes planning and allocating resources for their care. Failure to monitor the quality of their care hampers detection of prejudicial or inadequate treatment. Recent advances in neurosciences, genetics, psychopharmacology, and other fields of research could improve the diagnosis and treatment of individuals with MR and emotional, behavioral, or psychiatric disorders (dual diagnosis).
At the same time, individuals, family members, and health care providers need easily accessible, scientifically accurate, culturally relevant, and understandable information for prevention and health promotion, as well as for diagnostic and treatment decisions. All aspects of health-related research, from biomedical and epidemiologic to health services and ethics, offer multiple opportunities to increase and improve the utility of scientific knowledge on health and MR.
Participation: Enable individuals with MR, their families, and their health care providers to partner with professional investigators in identifying health research priorities, and in designing and implementing research relating to health and MR.
Potential strategies: Include individuals with MR, family members, and their primary and specialty health care providers in research advisory committees and planning groups to provide input into the development of research proposals and grant submissions. Offer training to lay advisors in identifying research questions and other technical matters. Encourage federally funded health researchers to develop partnerships in which persons with MR, their family members, and other caregivers, including health care providers, are consulted and participate in the planning and conduct of research relevant to MR.
Research agenda: Develop a national research agenda that identifies gaps in existing scientific knowledge related to health and MR, including methodological challenges, priorities, feasibility, and timetables for achieving priority research.
Potential strategies: Develop specific agendas for basic, clinical, and translational research; for studies of the efficacy of wellness and treatment services and service models for people with MR; for legal and ethical issues, health care financing, and its relationship to outcomes; and for other matters identified by the community. Implement the December 2001 research agenda of the Workshop on Emotional and Behavioral Health in Persons with Mental Retardation/Developmental Disabilities (National Institutes of Health, Workshop on Emotional and Behavioral Health in Persons with Mental Retardation/Developmental Disabilities: Research Challenges and Opportunities, November 29–December 1, 2001). Enhance research collaborations across multiple research agendas and disciplines.
Data collection: Collect data on the health status of persons with MR in relation to the utilization, organization, and financing of their health services.
Potential strategies: Identify and evaluate existing data on health and MR. Add MR to population-based data collection on health status, health risks, health services utilization, and health care costs. Test methods of identifying patients with MR on Medicaid and other third-party payer claims for purposes of collecting data, while also protecting patient confidentiality. Conduct market research to determine attitudes toward MR of health care providers, and how to change negative attitudes. Survey individual practices, managed care organizations, and localities and States to better understand the experiences of individuals with MR when they seek health care.
Research subject protection: Review current ethical and legal rules for protection of human research subjects as they relate to individuals with MR. Revise these rules as necessary to facilitate the participation of persons with MR in clinical trials and other types of research, with full protection of their autonomy, health, and safety. Ensure that individuals, their families, their health care providers, and their advocates participate as partners in reviews and revisions of these rules. Ensure their participation in Institutional Review Board (IRB) reviews of research proposals relating to MR.
Potential strategies: Provide training in legal and ethical rules for protection of human research subjects to lay participants in review and the revision of these rules. Provide training in IRB standards and procedures.
Understanding and use: Provide assistance for individuals with MR, their families, and their health care providers in finding, evaluating, and using health research findings to help in the prevention, diagnosis, and management of medical (including psychiatric), psychological, and oral health conditions, and to inform treatment decisions by individuals and their families.
Potential strategies: Establish, and keep current, a national clearinghouse, a website, and a list-serve to guide users in identifying and evaluating research, and to promote their exchange of information and opinions. Design science-based continuing education curricula for licensed health care providers. Translate peer-reviewed journal information, reports of evidence-based best practices, and other findings for lay consumption, and disseminate information to provider groups, and State agencies that serve persons with MR, and provider trade journals.
Research capacity: Increase the number of investigators trained in health and MR research.
Potential strategies: Fund undergraduate training and postdoctoral research fellowships at medical, dental, and other health professions schools and training programs targeted specifically at issues relevant to MR. Solicit proposals for multidisciplinary research. Solicit proposals from centers and programs that provide health care to individuals with MR, especially those living in their communities. Solicit joint proposals from these providers and investigators at medical, dental, and other health professions schools and programs.
Visibility: Enhance the visibility of health and MR research.
Potential strategies: Increase and ensure appropriate use of funds to support research on health and MR, including expansion of studies on dual diagnosis and other disorders for which individuals with MR are at elevated risk. Create prizes and other awards for excellence in health and MR research. Endow chairs for health and MR research at health professions schools. Establish special interest sections in health research organizations. Support special plenary lectures on health and MR at national medical, dental, and other health professions meetings. Publish health and MR research findings in peer-reviewed medical (including psychiatric), dental, psychological, nursing, physician assistant, dental hygienist, and other health-related journals, as well as in health services research and policy journals.