David Smith United Way of Greater Houston Dr. Katharine Ball-Ricks University of Texas Health Science Center at Houston School of Public Health

* “…populations where there is a significant disparity in the overall rate of disease incidence, prevalence, morbidity, mortality, or survival rates in the population as compared to the health status of the general population” * National Institutes of Health, 2013 * Populations generally affected * African Americans * Hispanics/Latinos * American Indians, Native Hawaiians & other Pacific Islanders * Asian Americans * Socioeconomically disadvantaged * Rural populations

* Generally a result of: * Poverty * Environmental threats * Inadequate access to health care * Individual and behavioral factors * Educational inequalities (lack of education)

* Community Based Participatory Research and may include research on: * Cancer * Cardiovascular Disease * Chronic Kidney Disease * Diabetes * HIV and AIDS * Maternal and Child Health * Mental Health and Substance Abuse * Environmental (air quality, mold) * Obesity and Exercise

Purnell, Kreuter, Eddens, Ribsl, Hannon, Fernandez, Jobe, Gemmel, Morris & Fagin. Cancer control needs of callers in Missouri, North Carolina, Texas and Washington. Under review at Journal of Health Care for the Poor and Underserved. Standardized estimates of cancer control needs in callers (4 states pooled) vs. U.S Cancer Control Need2-1-1 Respondents (n)2-1-1*, %BRFSS US % p No health insuranceAll (n=1408) <.0001 Current cigarette smokerAll (n=1408) <.0001 Has smoke-free policyAll (n=1408) <.0001 Ever had a colonoscopyMen & women, 50+ (n= <.0001 Received HPV vaccination (self)‡Women, (n=229) <.0001 Received HPV vaccination (daughter)Have daughters 9-17, (n=271)35.9na<.0001 Up-to-date on mammography a Women, 40+ (n=529) <.0001 Up-to-date on Pap test b Women, 18+ (n=1128) <.0001 Note: na = not available *- Standardized by age and gender strata for the United States population. ‡ - Unstandardized because of only one age stratum for women. a Within last 2 years ; b Within last 3 years

* Pairing systems and researchers Combining, refining, and analyzing data Providing evaluation and funding assistance Laying ground rules for collaboration Setting a research agenda

Cancer risk factors & prevention needs: Houston callers (n=375) vs Texas and US Risk factor or preventive measure Respondents (n) 2-1-1TX*U.S.* No health insurance All (n=342) 42%26%15% Had mammogram in the last 2 yrs Women, 40+ (n=138) 45%73%76% Had Pap smear in the last 3 yrs Women, 18+ (n=321) 79%82%83% Ever had a colonoscopy Men & women, 50+ (n=76) 32%56%62% Had FOBT within past 2 years Men & women, 50+ (n=75) 20%19%21% Received HPV vaccination (self) Women, (n=46) 4%na Received HPV vaccination (daughter) Have daughters, 9-17 (n=99) 29%na35% Current cigarette smoker All (n=329) 22%19%18% *2008 BRFSS; na=not available

Goals and Aims To increase the use of cancer control strategies among disadvantaged adults who call 2-1-1, we will: 1. Develop and pilot test an intervention 2. Provide risk assessment and referral services 3. Determine the effectiveness and cost effectiveness of the 211 Telephone Cancer Control Navigator Program

* Participating Call Centers: * Houston (CPRIT funded) * Weslaco (CPRIT funded) * El Paso (CNP funded; now CPRIT funded)

Risk factor or preventive measure Respondents (n) Houston Weslaco El Paso TX**U.S.** No health insurance All (n=3824) 44% 70%71% 26%15% Had mammogram in the last 1-2 years Women, 40+ (n=1534) 51% 62% 70%76% Had Pap smear in the last 3 yrs Women, 18+ (n=3438) 78%82%95%79%81% Ever had a colonoscopy Men & women, 50+ (n=923) 50%44%48%62%65% Received HPV vaccination (self) Women, (n=641) 19%9%19%15%17% Received HPV vaccination (daughter) Have daughters, 9-17 (n=888) 42%55% 38%44% Current cigarette smoker All (n=3824) 24%6% 18%19% **BRFSS 2010, n/a=not available

* How your 211 data can help * Knowing the needs of your community * Health Department Priorities * Internet Research

* Calling or Visiting * Schools of Public Health * Prevention Research Centers * Cancer Prevention and Control Research Networks * Community Network Programs * Clinical and Translational Science Award (CTSA) Community Engagement leaders * Community Organizations * Inviting University Professors to sit on boards, committees * Sending out “Calls for Proposals”

* Make a list of the major universities in your service area. * Google search – university + “health disparities research” * Yes, it’s that easy.

* Brown Bag Meetings * 211 Open House * Educate the community * Thought leader in the work * Community Committees * Networking

* Pre-Grant Proposal * Letters of Support * State and nation-wide partnerships (CNP, CPCRN) * During Grant-Writing Process * Sharing approach and previous work * First year of the study * Intervention Development/Training * Kick-off Meeting * Capacity Assessment/ Capacity Building * Implementation * Weekly meetings at Houston/ weekly update * Transparent Protocols & Processes/ Ongoing Quality Assurance * Collaboration: meetings, events, conferences and publications

From the academic perspective

* Lower acceptance and retention rate * Site Differences * Tailor strategies based on organizational culture * Research-based vs. Service-oriented * Balance each party’s interests: reciprocal relationships * Change in Site personnel * Need to “Over-train” * Variation in staff morale * Introduce different incentives

* Competing responsibilities * Commitment of collaborators * Implementation practices * Quality control * Support & Continuity

This is not unique to academic research, but pricing is an area where many struggle – effort versus results. Our Approach * Make a commitment based upon # of FTEs * 1 FTE -- coach/navigator * 2 FTE -- Recruiters * 10% of a manager’s time. * Convert to an hourly rate. * Expand out over the project timeline. * X # of hours for helpline specialists at $Y per hour * X # of hours of manager at $Y per hour.

Make a commitment based upon # of FTEs 1 FTE -- coach/navigator 2 FTE -- Recruiters 10% of a manager’s time. * Build an org chart that doubles the FTE commitment * 2 coaches * 4 recruiters

* Not Everyone Was a Successful Recruiter * Questions are too intrusive – we should not be asking. * Attached to the outcomes * Trouble switching gears/focus from a 3 to 5 minute I&R call to a 20 to 30 minute survey call. * Result : Burn out lead to “taking breaks”

* Francis Potakey * Time: 2 hours 0 minutes * Comments : “Very Talkative Caller. Digresses a lot for every question that you ask.” * Runner-Up * Vallery Arnold: 1 hour 26 minutes.

* All participants have to be certified in Human Subjects Research training. (Ethics) * Takes 8 hours to complete, plus 2 hours refresher every two years. * Project start-up training will vary, but ours have been averaging an additional 20 hours from selection to the start of recruiting.

* Have to be able to provide informed consent * IRB will not approve attempts to based upon age (under 18) or vulnerable populations (mental illnesses or intellectual disabilities) without additional safeguards. * Researchers will generally exclude from study recruitment, unless they have a specific interest. * AIRS Standards = we are ethically obligated to provide information and referral services to all of these populations. * Need to discuss at the start of the contract.

RecruiterResults% 11415% 21314% 31213% 45155% 533% 93100%

2-1-1 Systems take an estimated 16 million calls annually With the potential of reaching 5 million smokers, 3.1 million women in need of Pap tests, 2.6 million women needing mammograms, 2.3 million women needing the HPV vaccination, 1.9 million with daughters in need of the HPV vaccination, 1.9 million in need of colonoscopies