CHEER – The Basics August 20, 2010 Kris Schulz, MPH Chief Research Officer, AAO-HNSF

1. CHEER – The BasicsAugust 20, 2010Kris Schulz, MPHChief Research Officer, AAO-HNSF

2. Mission and Focus • Importance of Community-Based Research Networks • Challenges and Strategies • CHEER Structure • Hubs and PIs • Coordinator Advisory Board • Participating Sites • AAO-HNSF Role Components of this PresentationCHEER

3. Creating Healthcare Excellence in Education and Research • Mission: To become the national resource for practice-based clinical research in hearing and communicative sciences. • In practical terms -- Provide the necessary infrastructure to accelerate clinical research in order to improve patient outcomes. • Focus: Research education -- to standardize Coordinator education across academic and community sites, so sites are ‘at the ready’ to participate, patients are protected and safe, and the integrity of gathered data is maintained. Mission and FocusCHEER

4. Website: www.cheerresearch.org Mission and FocusCHEER

5. The key Significance is translation: • Many proven effective treatments do not become incorporated into everyday care (1) • Quantified in one study -- only 14% of findings from research filter into practice, and for those that do, it takes an average of 17 years (2) • The disconnects that impede translation (3) : • Research may not translate expeditiously to everyday practice; • Clinical problems encountered in everyday practice are often underinvestigated; • “Over-investigation” which leads to waste in the healthcare system is also a reality (involving community practitioners in topic selection is crucial) • IOM report “Crossing the Quality Chasm” • Balas E et al. “Managing Clinical Knowledge for Healthcare Improvement. Yearbook of Medical Informatics 2000: Patient Centered Systems” Stuttgart, Germany: Schattauer; 2000.) • Tierney WM et al. “A National Survey of Primary Care Practice-Based Research Networks” AFN, May/June 2007; Vol 5 No 3 Importance of Community-Based Research NetworksCHEER

6. How the community feels when they try to participate in research protocols generated in Academia… (http://www.flakmag.com/opinion/tower.html)

7. Key Challenges: • Providing appropriate levels of research education and training • Planning and implementing research studies in busy practices (staff time and lack of financial incentive) • If not managed well -- poor recruitment, monitoring, follow-up, etc. (and lost investment in education) • Selecting studies that meet the goals and objectives of everyone in the network, regardless of type of site • Academic research questions are not always the crucial questions in everyday practice! • Selecting the study inclusion and exclusion criteria so as to not “criteria-out” community sites • (Source: Graham DG et al. “Strategies for Planning and Launching PBRN Research Studies: A Project of the Academy of Family Physicians National Research Network” JABFM, March-April 2007; Vol. 20 No.2) Challenges

8. Guiding principles for success when working with community partners: • Appropriate empowerment and leadership; • Clear and written goals, roles, privileges and rules of engagement; • Ample communication and training; • Transparency in project activities, methods and concepts; • Financial or in-kind resources for community partners; • Transparent and equal standards for performance • (Source: Jones L, Wells K. “Strategies for Academic and Clinician Engagement in Community-Participatory Partnered Research” JAMA; Jan 2007; Vol 297, No 4.) Methods to Address Identified Challenges – Embraced by CHEER

9. Hub and Spoke Model • Overall Coordinating Center (Duke) • Professional Society Coordinating Center (AAO-HNSF) • 5 Academic Hubs • ‘Community’ Sites network through Academic Hubs CHEER Structure: Hubs and PIs CHEER Hubs (PI/Coordinator): Grant PI: Dr. Witsell/Duke Duke: Dr. Tucci/Cresha Cianciolo UT Southwestern: Dr. Roland/Barb Staves Univ of Michigan: Dr. Telian/Bianca Waller & Laura Eldred Washington U: Dr. Piccirillo/Sara Kukuljan MEEI: Dr. Rauch Staff/Project Leads: Kris Schulz, AAO-HNSF, kschulz@entnet.org Kathy Moore, Duke, kathy.moore@duke.edu

10. Member – Academic/CHEER Hub Bianca Waller, RN, BSN; Laura Eldred University of Michigan Member – Academic/CHEER Hub Barbara Staves, BS, CRC UT Southwestern Medical Center, Dept. of Oto Member – Academic/CHEER Hub Sara Kukuljan, RN, BS, CCRC Joyce Nicklaus, RN, BSN Washington University School of Medicine Member – Academic/CHEER Hub Cresha Cianciolo, RN, CCRP Duke Clinical Research Institute Member – Non-Hub Academic Fleesie Hubbard-Coursey University of Maryland, Dept of Otolaryngology Member – Community Angela Price, MPH, CCRC Charlotte ENT Associates Southpark Member – Community Marti Gardner, MSN, NP-C, CCRC Commonwealth ENT Ex-officio (Network Leadership Expert) Jean Bolte, RN, MSN Duke Clinical Research Institute Staff/Member – Research Methods Kris Schulz, MPH AAO-HNSF Staff/Member - Regulatory Kathy Moore Duke Clinical Research Institute CHEER Structure: Coordinator Advisory BoardA leadership group that represents the different perspectives of the CHEER sites, based on level of coordinator and PI experience, site type (i.e. Academic/Research, Academic, Large-Mid-Small Community), and the different research questions and everyday priorities and challenges seen at each site.

11. Duke University Sites (100): Charlotte ENT Associates, NC (101) Low Country ENT, SC (102) Medical University of South Carolina (103) House Ear Clinic, CA (104) Philadelphia ENT Associates, PA (105) University of California Irvine (106) Summit Medical Group, NJ (107) Coastal Ear, Nose and Throat, NJ (108) ENT Surgeons of Western N.E., MA (109) University of Texas Southwestern Sites (400): Tucson ENT, AZ (401) Oregon Health Sciences University (407) University of Texas Medical Branch (404) University of Michigan Sites (200): Ear, Nose and Throat Associates PC, IN (201) New York Ear and Eye Infirmary (202) Ear Institute of Chicago, IL (203) University of Maryland (204) Puget Sound Hearing and Balance, WA (205) Massachusetts Eye & Ear Infirmary (300) PI site only Washington University Sites (500): Commonwealth ENT, KY (501) Metro Ear, Nose and Throat Group, MO (502) St. Louis ENT Health, MO (503) Sound Health Services PC, MO (504) CHEER Structure: Participating Sites (n=26)

12. DCRI Coordination Leadership: • Overall grant coordination • Regulatory requirements • Grant management/financial/site payments, etc. • Technology to develop/support databases/websites • PI and research (e.g. statistics, methods, etc.) leadership and expertise • AAO-HNSF Coordination Leadership: • As a professional society of otolaryngologists, AAO-HNSF has the relationships and communication portals in place to promote CHEER • Communication with PIs and Coordinators • Project leadership & management for all CHEER projects (e.g. clinical scholars; coord conf; data collection project) • Site interface and contacts/profile database • Promotion of CHEER accomplishments through articles, etc. CHEER Structure: AAO-HNSF Role

13. QUESTIONS? THANK YOU FOR YOUR TIME KRIS SCHULZ, MPH CHIEFRESEARCH OFFICER AAO-HNSF kschulz@entnet.org 703-535-3749