Research Issues for Mental Health Consumers: Making a Connection Between Research and Advocacy

1. Research Issues for Mental Health Consumers:Making a Connection Between Research and Advocacy Boston University Center for Psychiatric Rehabilitation. Innovative Knowledge Dissemination & Utilization Project for Disability & Professional Stakeholder Organizations/ NIDRR Grant # (H133A050006)

2. Lesson 1. • What is the value of research? • What is the connection between research and advocacy? • What is the connection between research and recovery?

3. Lesson 2.Purposes of Research Some examples…. • Discover what is more likely to promote recovery and a better life • Learn what influences recovery in a negative way • Learn what can be done to promote healthy lifestyles

4. Lesson 3.Types of Research • Historical • Descriptive • Developmental • Case and Field Study

5. Types of Research • Relational • Causal – comparative • Quasi Experimental • Experimental

6. Participatory Action Research Those who are being studied: • select and refine the topic • select and refine the design • conduct the study • analyze findings • shape the use of the findings

7. Quantitative Research • Uses numbered responses, scales or other measures • Design and use of data collection is key • Scientific principles are essential

8. Qualitative Research • Look for new and deeper understanding of complex issues and trends or themes • Tend to be smaller number of participants • More open ended questions

9. Lesson IV. Principles of Good Quantitative Research • Use the right type of research to answer the research question • Measure the same thing each time a measure is used • Measure what it is supposed to measure

10. Principles of Good Qualitative Research • Bring new understanding to complex problems • Find common themes, strategies and challenges and describe them in new ways

11. Lesson V. Rights and Ethics • Absolute commitment to “do no harm”. • All participants should be voluntary and fully informed. • Ensure that participants receive something of value that is not sub-standard. • All information about participants should be guarded and considered highly confidential.

12. Lesson VI.Using the Results The two main standards for the usefulness of the results: • Rigor - is there strong scientific evidence? • Meaning – can it be used to improve lives?

13. Use of Results Be aware, when interpreting or using the results of factors which may influence their broad use: • Who funded it? • What benefit might result to the funders – or others- if the results are used in a particular way?

14. Use of Results • Results of Research can be used to design or improve treatment or rehabilitation services • Results of Research can be used to fuel advocacy work (Example: if you are advocating peer run respite and have research to show good outcomes, your job is easier.)

15. Lesson VII. The Past and the Future of Consumer Involvement • The old view: consumer is only one to be studied • The new view: involve consumers in every aspect of the research…Their lived experience can offer a deeper or more subtle understanding that enhances the research and would otherwise be missing.

16. Connect the Dots……………. • Research which is done well can support the efforts of Advocates…… • Advocates can support the work of good research

17. Honor: Just a Few of the Many Pioneers • Peter Beresford, Brunel University, London, UK • Gayle Bluebird, Independent Consultant, Gainesville, FLA. • Jean Campbell, University of Missouri School of Medicine • Judi Chamberlin, National Empowerment Center, Lawrence, MA. • Patrick Corrigan, Illinois Institute of Technology, Chicago, IL. • Larry Davidson, Yale University, New Haven, CT. • Pat Deegan, Pat Deegan & Associates, Byfield, MA. • Jonathan Delman, Consumer Quality Initiatives, Boston, MA. • Ed Knight, Value Options, CO. • Steve Onken, University of Hawai’i, Honolulu, HA. • Ruth Ralph, Muskie School of Public Health, Portland, ME. • Priscilla Ridgeway, Yale University, New Haven, CT.