National Leadership for Diversity in Clinical Trials

1. National Leadership for Diversity in Clinical Trials Elena Rios, MD, MSPH President & CEONational Hispanic Medical Association June 10,2013

2. Demographics

3. Demographics

4. Key Trends Minorities face health care disparities in America By 2042, over half of Americans will be minority populations Latinos – immigrants, mixed families with strong cultural values -will be 1 out of 4 Americans Our nation is undergoing a major transformation: Cultural Competence & language requirements in hospitals/clinics and for future providers in primary care, nursing, home health Health care reform expands health care coverage to Hispanics and African Americans and increases the need for education and outreach efforts Quality and value payments for patient centered in medical homes Disparities in obesity & chronic disease for minorities remain high New demand for community-based health prevention and research NHMA/NHHF seeks to cultivate public and private partnerships to make a positive impact promoting prevention awareness & good will in new and growing Latino communities and markets around the nation

5. Clinical Investigator Perceptions of Clinical Trials • Need for increased cultural competency training to enhance understanding of group and interpersonal relationships, perceptions of disease and wellness, to improve their access to minority communities* • New knowledge regarding medications and treatment • Increased awareness of health care disparities • Community benefit is a strong incentive** Source: O’Brien RL, et Al, Self-Assessment of cultural attitudes and competence of clinical investigators to enhance recruitment and participation of minority populations in research, JNMA, 2006 May 98(5)674-82. **Christ JD, et al. Recruiting hospitalized Mexican American elder adults and caregivers: challenges and strategies. Res Gerontol Nurs2013 Jan:6(1):22-8.

6. Clinical Trials Involvement of Latino & White Physicians • Latino physicians less involved with clinical trials and had mistrust of research – but were more likely to participation based on • 1. the physician’s familiarity with the protocol, physician leading the study, or institution conducting the study; and • 2. the patient’s desire to advance medical knowledge. Source: Ramirez A, et al. The Clinical Trials Involvement of Latino and White Physicians, ContempClin Trials 2008 July 29(4); 482-492.

7. Subject Perceptions & Clinical Trials • Barriers: • Study intensity and duration • Lack of financial incentives • Challenges in establishing trust • Language and communication • Need for low literacy materials • Need for being better informed about healthcare and disease • Need for clarifying immigration status would neither be documented nor prevent participation Source: Ford ME. Unequal burden of disease, unequal participation in clinicla trials: solutions from African American and Latino community members. Health Soc Work 2013 Feb;38(1) 29-38.

8. Racial/Ethnic Diversity & the Researcher Pipeline • Expand the STEM and Biomedical Research Programs at NIH, Department of Education, NSF for HBCU and Hispanic Serving Institutions • Need collaboration across the programs • Need collaboration among minority institutions • Need collaboration with graduate level programs at academic medical centers and graduate science programs • Congressional Hispanic and Black Caucus, minority advocacy leaders to be engaged

9. Diversity with Research Students • We need to support the continued NIH Minority Student Programs – undergrad, graduate, post-doc level • Minority Student Supplements for research • Tracking and monitoring of student databases as you do with Principle Investigators • National Hispanic Research Student Program

10. Mentoring for Diverse Researchers • Mentors at local and national Level • Mentees at undergraduate and graduate level with post-doctoral mentors • Faculty speakers at Regional Research Summits • National Hispanic Medical Association and other national researcher summits • Collaboration of a national meeting with research organizations’ Hispanic students

11. Minority Institutions and Organizations • Hispanic Serving Institutions and Historically Black Colleges and Universities and Minority Health Professional Associations should be supported to • Expand research training of faculty and students • Develop Language concordant navigators • Train clinical research staff to use E-medical records for research • Interdisciplinary clinical research team training • Community-based research strategies • Alumni research networks

12. Clinical Trials Incentives • Medical practices research program • Major cities with large Hispanic populations • Academic physician program • Recruitment Component • Technical Assistance Component • Training Program and sharing of lessons learned • Showcase in a Website • Online community

13. NHMA & NHHF– Who are We? Established in 1994 in DC, NHMA is a non-profit 501c6 association representing 45,000 Hispanic physicians in the U.S. Mission: to empower Hispanic physicians to improve the health of Hispanic populations with Hispanic medical societies, residents, students and public and private partners. Established in 2002, NHMA’s foundation, National Hispanic Health Foundation, a non-profit 501c3 foundation for research & education activities – affiliated with NYU Wagner Graduate School of Public Service

14. NHMA Board of Directors • Efrain Fuentes, EdD, Director, Multicultural Programs, Disney • Paloma Hernandez, MPA, CEO, Urban Health Inc. • Tony Linares, MD, Regional Medical Director, Anthem • Jorge Mettey, SVP, NoticiasMundoFox • Norma Parra, MD, CentroMed • Jorge Puente, MD, Regional President of Asia, Pfizer • Nelson Reyneri, VP, Liberty Power • JP Sanchez, MD, Instructor, Pediatrics, Montefiore • Gerardo Lopez-Mena, MD, Chairman, Council of Residents, Johns Hopkins Emerg Medicine • Alvaro Galvis, National Coordinator, LMSA, UC Irvine • Kathy Flores, MD, Chairwoman, Director, UCSFresno Latino Research Center • Louis Aguilar, MD, Treasurer • Sam Arce, MD, ViceChair, NYC • Jorge Girotti, PhD, Secretary, Assoc. Dean, U of Illinois, Chicago School of Medicine • Elena Rios, MD, MSPH, President/CEO, NHMA • Raymond Arroyo, VP, Aetna • David Carlisle, MD, President, Charles R. Drew University of Biomedicine and Science • Emilio Carrillo, MD, MPH, Professor, Cornell Weill School of Medicine • Judy Flores, MD, Director, Adolescent Medicine, Woodhull Medical Center

15. NHHF Board of Directors • Jo Ivey Boufford, MD President, New York Academy of Medicine • Dijuana Lewis, MBA Director, Health Solutions,Walmart • Gary Pelletier Director, Pfizer Helpful Answers • Yasmine Winkler, VP, United Healthcare • Mark Diaz, MD Chairman, Principal, Alivio Medical Group, Sacramento, CA • Conchita Paz, MD Secretary -Treasurer, Principal, Family Care Associates, Las Cruces, NM • Elena Rios, MD, MSPH President, NHHF, NY

16. National Hispanic Medical Association – what do we do? • Serve as a resource for White House, Congress, and Federal agencies on health policies and programs • Support Hispanic physician leadership at national and state level • Provide networking opportunities for advancement of Hispanic health

17. National Hispanic Medical Association Programs • Serve as a Resource: • Federal government • Capitol Hill Briefings on Hispanic health Issues to eliminate health disparities • Nominate members to Federal advisory commissions • Private sector • Provide technical assistance to corporate health programs • Nominate members to corporate boards • Leadership Development: • NHMA Leadership Fellowship • National Hispanic Health Professions and Medical Societies Leadership Institutes • Health Professional Student Recruitment and Mentoring Programs • Networking: • NHMA 17th Annual Conference, Apr. 25-28, 2013, Washington, DC • Regional ACA Events

18. Research needed on ACA, Latinos and Obesity Reduction • International and binational strategies • Institute of Medicine Study • NIH – community-based interventions • AHRQ – health disparities report • PCORI – comparative research targeted to Latino patients/consumers • DOD – families in the military and how they can decrease child obesity; readiness research – youth and obesity reduction

19. NHMA Network 2013 Six Regional Steering Committees Hispanic State Medical Societies National Hispanic Health Professional Leadership Network: National Association of Hispanic Nurses Hispanic Dental Association Latino Caucus of APHA Latino Forum of Health Executives Physician Assistants for Latino Health Mental Health Workers, Dietitians, more… 12,000 Members and 45,000 Prospects Latino Medical Student Association Affinity Services for members

20. NHHF Corporate Advisory Board • Abbott Nutrition • Allergan • AstraZeneca • Eli Lilly • Forest • Genentech • Johnson & Johnson • Pfizer Inc • Pharmaceutical Manufacturers Association of America (PhRMA) • Merck & Co. • National Dairy Council • Novartis • Novo Nordisk

21. Partners • AARP • American Cancer Society • American Diabetes Association • American Heart Association • American Medical Association, NMA – Commission to End HD • Voces Verdes/NRDC • AT&T and Verizon • Canopy (online medical spanish) • Aetna • Walmart • National Health Careers Network (NHMA job board) • United Health Foundation • California Healthcare Foundation • WK Kellogg Foundation • RWJF, Commonwealth Fund, CA Endowment, Josiah Macy Jr F. • Maximus, Emblem Health, Empire BCBS, Anthem, Care First • National Hispanic Leadership Agenda and Coalitions – Medicaid, Chronic Disease

22. NHMA, Partners and Media on ACA – April 28th Institute • National Association of Hispanic Publications • Hispanic Link • ImpreMedia (LaOpinion of Los Angeles, El Diario of NY) • UNIVISION • FUSION (First English language news channel about Hispanics: UNIVISION & ABC-TV • Telemundo • NBC Latino (website) • NoticiasMundoFox and Fox Latino (website) • CNN en Espanol • Latina Style Magazine • Invited: Futuro Media Group, New America Media • Missing: Social Media Latino and Youth, Bloggers

23. National Hispanic Health Foundation – what we do? • Education • Research • Support Hispanic health professionals and health professional students

24. NHMA Advocacy 2013 – working with NHLA, CEHD • ACA Support and Maintain – Access, Prevention/Obesity • Diversity in Health Workforce – • Hispanics Recruitment to Health Careers with CHC, Dept of Ed/White House, NSF, NAS on STEM • Immigration Reform and Health Care • Veterans’ Health – certification to physicians and clinics, cultural competence • CLAS - Cultural Competence Training • Health in all policies/Health Equity

25. NHHF Selected Programs • Education • Kellogg Foundation Child Obesity (0 – 8 years old) • Federal Panel of Experts from Agencies on obesity policy Y1 • Physician Leadership Institute with Latino Caucus Chairs in Y1 • CA and NY State Policy Summits in Y2 • Research • National Center for Hispanic Community Health Research (in progress) • National Hispanic Health Professional Student Scholarship Program • Gala in Los Angeles, Nov. 21st • Gala in New York City, Dec 5th

26. NHMA & NHHF Contact Us • NHMA - www.nhmamd.org • NHHF - www.nhmafoundation.org • Portal - www.hispanichealth.info • NHMA 18th Annual Conference, March 2014, Washington, DC

27. National Hispanic Health Professional Student Scholarship Program

28. NHMA Board of Directors with Secretary Sebelius

29. Congressman Charlie Gonzalez

30. Congress Briefing

31. Health Leaders Attend

32. Medical Society Presidents

33. Award our Champions