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CSX RESEARCH POLICY POSITIONS

Summit 2000: The Second National Summit of Mental Health Consumers and Survivors Tuesday, June 6 th , Washington D.C. CSX RESEARCH POLICY POSITIONS

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CSX RESEARCH POLICY POSITIONS

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  1. Summit 2000: The Second National Summit of Mental Health Consumers and SurvivorsTuesday, June 6th, Washington D.C. CSX RESEARCH POLICY POSITIONS • Prepared by Jean Campbell, Ph.D., Director, Program in Consumer Studies and Training, Missouri Institute of Mental Health, UM-Columbia, St. Louis, MO

  2. CSX Research Involvement • We must organize, educate, and empower consumers to recognize the value of research on all levels. Research can be a voice of the CSX community. We need to advocate for the following:

  3. CSX Research Involvement • Support for the education of the CSX community around research. • CSX researchers to reach out to the advocacy movement so research can support CSX issues. • Education for CSX research participants/subjects.

  4. CSX Research Involvement • Establishment of a Technical Assistance Center for CSX Research and Training. • Support for a CSX Training Institute or Conference in Research and Evaluation. • Establishment of a clearing house for CSX research data.

  5. CSX Research Involvement • Education of CSX community around different models of CSX participation in research

  6. CSX Research Involvement • We need to promote the meaningful involvement of CSXs in research and evaluation overtime and with real power.

  7. CSX Research Involvement • Advocate for representation in (1) setting research agendas such as federal research priorities, (2) reviews of research grants, (3) the writing of research announcements and proposal requirements, (4) advisory boards, (5) editorial boards of peer review research journals.

  8. CSX Research Involvement • CSX researchers must gain access to research data and broadly distribute data to research participants/subjects and the CSX community. • CSX research community must create standards of excellence for CSX involvement in research.

  9. CSX Research Involvement • CSX research community must develop an evaluation protocol for determining the quality of CSX participation in research. • The CSX research community should identify and recognize exemplary research and CSX involvement (e.g., awards)

  10. CSX Research Involvement • We must promote the values of CSX partnership in research by promoting the following actions:

  11. CSX Research Involvement • CSX research community should partner with other disability and health advocacy movements. • CSX research community should partner with other mental health organization where goal are common.

  12. CSX Research Involvement • CSX research community should develop a directory of CSXs involved in research. • Advocate for the establishment of equal pay for equal work at all levels of research participation.

  13. CSX Research Involvement • Advocate for research funding agencies to support the development of CSX instruments and scales. • Promote the collection of data in all research endeavors that is relevant to diverse CSX populations such as age, gender, sexual preference, ethnicity, disability.

  14. CSX Research Involvement • Insure that all research protocols are culturally sensitive to language and regional differences of participants.

  15. Research Design • In issues of recruitment, cross-over, withdrawal, and the selection and use of control groups, the values represented by the CSX movement require that the well-being of CSX research participants are held ABOVE the “gold standard” of scientific rigor.

  16. Research Design • Researchers should respect CSXs who decide to decline participation in research projects. The practice of repeated contact with potential subjects who decline participation or the use of “converters” should be eliminated.

  17. Research Design • In any research project that uses CSXs as subjects, a booklet should be developed which contains the important information needed by a CSX when deciding whether or not to participate in the research project.

  18. Human Subjects Protections • We propose to establish a CSX Commission for the Protection of Human Research Subjects. • This commission will review human subjects protections and identify both unethical and exemplary practices in research. • This commission will develop human subject protection statements and policies.

  19. Human Subjects Protections • The CSX community will oppose the unethical use of people in research and the use of people in unethical research.

  20. Human Subjects Protections • The CSX community demands meaningful participation of CSXs within the NBEC (National Bioethics Commission) as well as other committees or commissions that are setting policies regarding human subjects protections.

  21. Human Subjects Protections • The CSX community opposes challenge studies, wash-out studies, and the use of placebos because such research practices pose a risk to the individual.

  22. Human Subjects Protections • The CSX community believes that in NO instance should the “public good” be placed above an individual’s civil rights or well-being in any research project.

  23. Recommendations for Internal Review Boards (IRBs) • CSXs must have meaningful participation on IRBs. CSXs must receive training for participation on IRBs. • All forms of research and evaluation need to be reviewed by an IRB, including quality improvement data collection and use.

  24. Informed Consent Protocols • CSX community demands full disclosure of risks and benefits to potential research participants including but not limited to the following recommendations: • A consent form which is fully comprehensible to the participant. • A consent form developed by someone other than the researcher directing the study.

  25. Informed Consent Protocols • Repeated full disclosure at regular intervals during a study. • Follow-up research funded to monitor any long term side effects of a study. • Creation of a consent monitor and/or research ombudsperson independent of the research project.

  26. Informed Consent Protocols • The informed consent process should only be used to fully inform the research participant and should NEVER be primarily used as a legal means to limit liability to the research institute.

  27. Next Steps • A comprehensive review of past peer research. This review would be conducted by CSX researchers. • Negative outcomes of coercion, seclusion, restraints, involuntary commitment, and all other forms of involuntary “treatment” must be studied.

  28. Next Steps • Promote the establishment of a CMHS funded dialogue process between traditional mental health researchers and the CSX community. • Where peer alternatives are researched, the project must include (a) the meaningful involvement of CSXs on all levels, and (b) both qualitative and quantitative data and analysis must be conducted.

  29. Next Steps • Support the development by CSX researchers of fidelity models and studies for alternatives services. • Eliminate the use of stigmatizing language by researchers and in research publications. This can be accomplished by educating researchers, and editorial boards about how to use stigma-free language.

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