Our responses from San Antonio:
1. Do you or any other organization or program within your institution support an ongoing, engaged Patient Advisory Group (PAG)? YES____ NO__X__ If YES, please describe the purpose of the PAG(s)? (e.g., Does the group review protocols, serve on an ethics or IRB committee, advise your CTSA community engagement program, provide feedback on hospital care experience, etc.) 2. Do you or any other organization or program within your institution support an ongoing Community Advisory Board (CAB)? YES_X___ NO____ If YES, please describe for each CAB, what community(s) they represent and what is their role(s)? We have several. there is a Community Health Advisory Board meant to advise the CTSA leadership, composed of representative from CTSA partner organizations, non-profits, and others. The group is currently being reorganized for the first year of our renewed grant. We’re trying to give it a clearer purpose and to increase its impact on the CTSA. We have a Research to Advance Community Health (REACH) center, whose mission is CER, that has its own CAB, composed of community representatives. We have geographically organized Translational Advisory Boards (TABs) that are county-based and designed to promote collaboration with our CTSA around specific projects that emerge out of county needs-assessments. 3. Do any patients or community members participate in any health information related research or activities (for example, advise on your online patient recruitment registry; serve on an HIT advisory board, etc.)? YES__X__ NO____ If YES, please describe their role(s). REACH has community members on its advisory board for its CER (e.g. PCORI) projects. 4. How did or do you plan to quickly identify 2 patient leaders in ALS, breast cancer, obesity, or another disease to come to Kansas City to attend the LEK meeting on August 17 and 18? We’ll be organizing to do this. 5. What attributes did or are you looking for in your lead patient advocates? Willingness to speak and be heard; understanding of the issues but hopefully without a unitary agenda so narrow as to be distracting or unhelpful 6. If you have a current plan for how you will engage patients/advocates in your GPC efforts, please share them. Not yet. Regards, Bob Robert L. Ferrer, MD, MPH Dr. John M. Smith Jr. Professor & Vice Chair for Research Department of Family and Community Medicine Adjunct Professor of Public Health University of Texas Health Science Center at San Antonio Associate Editor, Annals of Family Medicine 7703 Floyd Curl Drive San Antonio, TX 78229-3900 [email protected]<mailto:[email protected]> tel 210 358 3885
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