The following questions were discussed by participants in a breakout session at Health Advocates in Research: Conference 2005. These questions are useful to ponder on an ongoing basis.

Breakout I: Models of Advocacy in Research

1. What are some models of advocacy used in your organization, and some concrete examples of how they have worked in practice? Examples include, but certainly are not limited to:
   
   1. influencing research funding
   2. framing research questions
   3. training consumer members of research boards
   4. educating patients or families about research participation
   5. monitoring human subjects treatment during clinical trial
2. What have been some of the strengths and weaknesses of the approach(es) you have taken?
3. Can you provide feedback on the “Models of Advocacy in Research” conceptualization?
   1. Is it helpful?
   2. What would make it clearer?
   3. What is missing?
4. Based on your experience what do you see as strategies for more effective advocacy?
   1. On what sorts of models should advocates be focusing their attention?
   2. How much, and in what ways, should we who make up the research advocacy “community” coordinate our efforts and blend or synchronize our models (e.g., via coalitions, joint ventures, joint funding)? Is this necessary in order to be sure research advocacy as a whole effectively serves the public?
   3. How, and in what ways, does the plurality of research advocacy models serve the public? Are there dangers in coordination or collaboration?
5. Should there be standardized qualifications for advocates in research?
1. What form might they take (e.g., certification, standardized exam on competencies like IRB model, competencies satisfied by course-work, intensive courses, exams)?
2. What should be included in the content of a program of training/education for research advocates?

Breakout II: Ethics of Research Advocacy

1. What are one or two of the most serious ethical issues you face, and/or have come into contact with, as research advocates?
   1. Please share some specific examples, as the panelists did
   2. How do we cope with these issues concretely?
2. Are there potential conflicts inherent in the relationship between research and advocacy? For example:
   1. The tension between representing the specific interests of your constituency/group, and the ethical mandate to expand research resources for all?
   2. The conflict between meeting immediate individual needs of sick patients and the benefits to the larger public of long-range, large-scale studies?
3. Would an ethical code or ethical principles help guide your activities?
   1. What would such a code or statement include?
   2. Are there prototype documents and/or processes that would be a good starting place?
   3. What future steps should be taken to develop a code or statement of principles?
   4. What might be some of the drawbacks of such a code?
   5. How might we make such a code actionable, and what leverage do we have to make this occur? Without the authority of professional organizations or licensing boards, how are ethical standards legitimized and enforced?
4. Should there be an organized voice for political advocacy (regulation or legislation) around these issues? To what extent are existing organizations performing this function?