Penn State Cancer Institute | Wednesday, June 26 2019
Background and Setting
The Hispanic/Latino Community Meeting was held from 10:00 AM to 3:00 PM on Wednesday, June 26, in the Wild Rose Room of the Hershey Lodge in Hershey, Pennsylvania (PA). The meeting was organized and conducted by the Penn State Cancer Institute (PSCI) Hispanic/Latino Cancer Community Advisory Board (CAB), co-chaired by Drs. Eugene Lengerich and Marcela Diaz-Myers. The CAB was established in 2018 to serve as a bridge between the PSCI and the Hispanic/Latino (H/L) community in the PSCI catchment area of 28 counties in central PA. This meeting was partially supported with funds from the Pennsylvania Department of Health (contract #410081743); 46 individuals (appendix) attended. The objectives were to:
- present cancer incidence data among Hispanic/Latinos living in Central PA,
- learn about cancer-related research involving Hispanics/Latinos in Central PA,
- present data from the PSCI Community Health Assessment (CHA),
- set priorities to cancer prevention and control in the Hispanics/Latinos in central PA.
The agenda had three major sections: Overview of Data and Research, Priority Setting, and Intervention/Research Design. Sol M. Rodríguez-Colón, MS, gave a welcome, an overview of the agenda and meeting objectives. Drs. Diaz-Myers, Raymond Hohl (PSCI director), and Lengerich provided opening remarks.
Section 1 – Overview of Data
In the first session, Dr. Lengerich presented sociodemographic (Table 1.1), cancer incidence and mortality, and CHA data. The sociodemographic data indicated that the Hispanic/Latino population in the catchment area was younger and lower median income. In addition, the Hispanic/Latino population higher prevalence of being uninsured and persons in poverty. There was discussion about a common association with Puerto Rico for many in the region and substantial migration from Puerto Rico after Hurricane Maria in September 2017.
Table 1.1: Sociodemographics of Hispanics/Latinos
PSCI Catchment Area | PA | US | ||
All Catchment Counties | Hispanic/Latino
(any race) |
|||
Population | 4,107,547 | 373,416 | 12,790,505 | 321,004,407 |
White, non-Hispanic (%) | 82.7 | 0 | 83.2 | 61.5 |
Black, non-Hispanic (%) | 5.2 | 0 | 11.5 | 13.0 |
Hispanic (any race) (%) | 9.1 | 100.0 | 6.8 | 17.6 |
Foreign-Born (%) | 5.1 | 21.5 | 6.6 | 13.4 |
Age 65+ (%) | 17.3 | 4.5 | 17.1 | 14.9 |
High School Graduate or Higher (25+) (%) | 88.2 | 69.8 | 89.9 | 87.3 |
Bachelor’s Degree or Higher (25+) (%) | 27.9 | 11.5 | 33.5 | 30.9 |
No Health Insurance (19-64) (%) | 8.0 | 14.3 | 7.1 | 10.5 |
Persons in Poverty (%) | 12.3 | 31.5 | 13.1 | 14.6 |
Median Household Income ($/Year) | 50,936 | 37,386 | 56,951 | 57,652 |
Cancer incidence and mortality data for the Hispanic population in central PA were compared to all residents of PA (Hispanic and non-Hispanic) and to the Hispanic population in the US. Briefly, both Hispanic females and males in central PA had lower overall cancer mortality rates, compared to females and males in PA and the US Hispanic population. Similar patterns were seen for breast and lung/bronchus cancer mortality among women and for lung/bronchus and colon/rectum cancer mortality among men. Mortality rates from cervical cancer among Hispanic women in central PA and prostate cancer among Hispanic men in central PA were similar to mortality rates for all of PA and to US Hispanics. However, both female and male Hispanics in central PA had substantially higher mortality rates from stomach and liver cancer than did females and males in PA and Hispanic females and males in the US.
In terms of cancer incidence, both female and male Hispanic residents in central PA had overall cancer incidence rates similar to all of PA but less than the rates for US Hispanics. Among women, Hispanics in central PA had lower incidence of breast, lung/bronchus, and colon/rectum cancers, compared to all of PA and to US Hispanic women. Among men, Hispanics in central PA had lower incidence of prostate, lung/bronchus, and colon/rectum cancers, compared to all of PA and to US Hispanic men. However, Hispanic women in central PA had increased incidence of cancer of the cervix, stomach, and liver, compared to all of PA and to the US Hispanic women. Hispanic men in central PA had increased incidence of cancer of the stomach and liver, compared to all of PA and to US Hispanic men.
Dr. Lengerich presented results from an initial 200 Hispanic/Latino respondents to the CHA. Data collection began in April 2019 and will continue through August 2019. The CHA is offered in both Spanish and English and in online and paper forms. The survey data will help us understand the cancer-related knowledge, attitudes, and practices of adults (ages 18+) residents in central PA and can be used to guide interventional and research efforts. The CHA was distributed by community organizations and members. Of the 200 respondents, 79% were female, 36% between 50 and 64 years of age, and 47% attended religious service every week. Almost three of four completed the CHA in Spanish. Similarly, three of every four reported being born outside of the US, including over 60% of those born in Puerto Rico. Two of every three respondents reported that it was difficult or very difficult to obtain health care serves; 70% reported having routine checkup in the past year. Of the respondents, 42% were very interested in participating in a study about weight control that focuses on diet and activity level, with 76% interested in completing a survey two or more times. Respondents reported that the best way to reach them was via U.S. mail (39%), email (30%), and face-to-face with a physician (25%). Daily fruit and vegetable consumption was low, with almost no one reporting 5 or more servings per day; similarly, physical activity was low with 58% reporting fewer than 2 30-minute episodes of exercise per week. One in six reported being a cancer survivor with 41% having a history of cancer in an immediate family member. Sixty percent reported that cancer is associated with death. Breast cancer screening and colorectal cancer screening was common; 94% of women reported mammogram in past year and 81% reported being current on colorectal cancer screening. These data served as a foundation for breakouts in part 2.
Overview of Research
The second session consisted of presentations from four new speakers including Dr. William Calo, Damaris Perez, Joanne Senft, and Dr. Raffy Luquis. Dr. Calo, an Assistant Professor in Public Health Sciences at the Penn State College of Medicine, presented his research on human papillomavirus (HPV) vaccination and education within the Hispanic/Latino community. Damaris Pérez is patient navigator employed at the American Cancer Society and working at PSCI. She assists cancer patients and their families overcome barriers to care through collaboration with the medical team and community resources and can collaborate in research. Joanne Senft, a registered nurse and PSCI project manager, spoke on research and education on the prevention of HPV-related cancers and statewide initiatives. Dr. Luquis, an Associate Professor of Health Education in Penn State Harrisburg, spoke on his research with Hispanic/Latino male promotores who serve as aids and advocates for men’s preventative care and cancer screening.
Part 2 – Priorities for cancer prevention and control for Hispanics/Latinos in Central PA
George Fernandez, CEO of Latino Connections, led the final session, the goal of which was to set priorities for cancer control research among Hispanics/Latinos in central PA. During the lunch break (prior to the start of Part 2), everyone was asked to vote on a total of three topics to be discussed in breakout groups during the final session. The topics ideas were:
- Health care – access, cultural sensitivity, financing;
- Cancer screenings – which ones, age to start, assuring follow-up of positive tests;
- Primary prevention – physical activity, diet, vaccinations;
- Two “create your own”.
These topics were displayed on white paper boards inside the conference room. Individuals were instructed to use stickers to mark topics that interested them the most, or to write in a topic of their own. The votes were tallied and the top 3 topics were selected for later discussion. The three selected topics were:
- Cultural sensitivity in healthcare
- Diet in primary prevention
- Physical activity in primary prevention
During the priority-setting session, individuals moved into pre-sorted groups, each of which congregated at a group table with a table facilitator. Groups were instructed to spend the first 5 minutes getting to know one another by playing an icebreaker game, “Truths or lie” (each person tells 2 truths and 1 lie about herself/himself and the rest guess which is the lie). After this introduction, topics were reviewed and groups were asked to develop or expand on one cancer-related initiative/research for Hispanics/Latinos in their county/community. Groups were reminded about strategies discussed earlier and to think about the cancer continuum: (prevention à screening and early detection à treatment à survivorship). A scribe was selected by each group and recorded ideas proposed by their group. At the end, each group gave a short presentation of their initiative/research study (Table 2.1).
Table 2.1: Breakout Session Topics and Results
Topic | Ideas |
Cultural Sensitivity in Healthcare |
Language – Hiring bi-cultural/bilingual staff
– Proper interpretation services – Correct translations – Keep in mind level of literacy |
Media – Use of videos/storytelling, not just written
– Messages tailored to Spanish speaking community, – Use of H/L actors – Use of local radio/commercials tailored to H/L |
|
Tools/Ingredients
– Use of food measuring tools found in this culture – Real, authentic H/L cultural food – Sensitive to tradition/folklore |
|
Connection – Creation of champions
– Incentives – Diversity Day – Connecting the whole family – Using the church as a home base and source of outreach – TRUST & RESPECT – between providers/ educators/resources and the community – Identify community gatekeepers/work with |
|
Diet in Primary Prevention |
Children – Early childhood intervention – at school and with parents
– Involve them in the cooking process – No sugar drinks available in schools – Using science to educate – Make it fun – keep it tasty |
Adults – Increase education of fruits and vegetables
– Educate on budgeting, modifying recipes, and nutrition content – Create incentives |
|
Access – Community Gardens
– Mobile kitchen for demonstrations partnered with supermarket/local farmers’ market – Classes for children/parents at school with skills they can use at home – Veggies Rx/Extension |
|
Physical Activity in Primary Prevention
Physical Activity in Primary Prevention
|
Children – School-based initiatives
– Make it fun! |
Adults – Statewide campaign “Move Ahead For Life”
– Steps vs. elevator, track steps via smartphone, – Free gym membership – Build in reward system – Walk by Faith / walking groups – Health and Wellness Resources |
|
Community Context
– Champions – TRUST/HONESTY – Utilizing community center/churches as hubs for reaching this population |
|
Other Cancer Concerns |
Screening
– Connect with PCPs and the family as a whole to address main concerns – CRC – home testing/incentives – Collaborate with local churches to get more people screened |
Vaccines
– Education on HPV vaccine from people they trust |
Part 3—Cancer-related initiatives or research studies
Initiative 1: Walk by Faith (Expanded)
This initiative would build upon the framework of the successful Walk by Faith project, which used a community-based approach to improve physical activity and diet.1 In the Walk by Faith (Expanded), we aim to incorporate a live demonstration kitchen at local churches after the morning service, which is a time that many return home or to a restaurant for lunch. The decision to hold this event at local churches takes into consideration that the Hispanic/Latino community places a strong emphasis on religion and could reach a large number of individuals. This kitchen would bring healthy, culturally relevant, and affordable food and recipes to the community and have expert demonstrations on how to do it at home. The kitchen would partner with local grocery stores (e.g., Giant), farmer’s markets, and food banks for the food donations. The kitchen would also offer an opportunity to demonstrate food preparation and connect with community members. Food donations especially those used in the demonstration could be distributed to people in attendance. Donated items could include ethnic and culturally recognized fresh produce (e.g., avocado, plantain, pineapple, papaya, mango). Food demonstrations would be based on a culturally and budget-friendly Spanish recipe book (e.g., Platillos Latinos ¡Sabrosos y Saludables! Delicious Heart Healthy Latino Recipes).2 In addition to the demonstration kitchen, the event could include education tables staffed by promotores with educational materials in Spanish. These materials would cover information on cancer prevention and screening. The Expanded Walk by Faith would create an in-person opportunity for the community to be introduced and connect with promotores.
The aims include:
- To reduce weight of overweight and obese participants with the help of churches
- To improve knowledge and practices of healthy food preparation
- To link promotores and patient navigators with the participants to sustain participation
Each group will complete an assessment of their understanding and practice of healthy diet, exercise, and cancer awareness and screening before and after the initiative.
Initiative 2: Hispanic/Latino Health Bingo
This educational initiative will provide the Hispanic/Latino community of central PA with a fun, culturally relevant, and educational initiative on breast cancer prevention, screening, and health care access. These events would be held at local churches that have event space and led by promotores. Breast cancer awareness and screening educational bingo cards have already been developed by Latinas Contra Cancer.3 We could use these cards as a template, with the possibility of creating our own cards to include education for HPV prevention and colorectal cancer screening. Promotores would interact with the community and build trust and a positive relationship.
The aims include:
- To determine whether the health education bingo raises cancer awareness and improves knowledge of cancer screening and screening guidelines
- To link promotores with community members and to sustain individual participation in the program.
Assessments of cancer knowledge, attitudes and practices of cancer screening will be completed before and after the initiative.
Meeting Evaluation
Evaluation forms were provided to each member of the meeting; 20 were returned (Table 3.1). The responses will help to shape future meetings. Respondents reported participating because they were a cancer survivor; touched by family/friends with cancer; personally interested in cancer issues in the community; and interested in helping with cancer prevention/education in the community. Most learned about the meeting through a member of the Penn State staff, with a few learning about the meeting via flyer, mailing, a friend, and word of mouth. The choice of facility and quality of food were met with very high ratings, while the meeting as a whole received an excellent rating. When asked if they were likely to attend a meeting like this in the future, all responded that they were very likely or complete likely to attend. Evaluators reported that the objectives for the meeting were clear to very clear and that all objectives had been mostly to completely met.
Virtually all evaluations commented positively and reported that the break-out groups and collaboration were a favorite part of the meeting. Others respondents highlighted the diversity of perspectives, the information and data, comradery, and group enthusiasm. Several suggested more time for the meeting as a whole, particularly the breakout sessions. One individual recommended to invite ‘real people’ from the Hispanic/Latino community. Suggested topics for future meetings included nutrition, clinical trials/research, ways to prevent specific types of cancer, healthcare, genetic testing, increasing knowledge of the community, community collaboration, and vaping and tobacco cessation. More than half reported a willingness to partner in future cancer-related initiatives and research.
For more information, contact Sol Rodriguez-Colon, Research Project Manager at srodriguezcolon@pennstatehealth.psu.edu.
Table 3.1: Evaluation Feedback
Question | Responses |
Reason for Participation (Check all that apply) |
· Cancer Survivor – 10% (breast cancer)
· Touched by family members with cancer – 55% · Touched by friends with cancer- 25% · Personally interested in cancer issues in the community – 80% · Interested in helping with cancer prevention/education in the community – 85% |
How did you learn about this meeting?
(check all that apply) |
· Flyer – 0%
· Penn State Staff – 80% · Mailing – 5% · Friend – 5% · Word of Mouth – 10% · Other – 5% |
How would you rate the facility where the meeting was held? | · Very Poor – 0%
· Poor – 0% · Fair – 0% · Good – 10% · Excellent – 90% |
How would you rate the quality of food and the food selections at the meeting? | · Very Poor – 0%
· Poor – 0% · Fair – 0% · Good – 5% · Excellent – 95% |
What is your overall rating of this meeting? | · Very Poor – 0%
· Poor – 0% · Fair – 5% · Good – 0% · Excellent – 95% |
How likely are you to attend a meeting like this again? | · Not likely at all – 0%
· Slightly likely – 0% · Moderately likely – 5% · Very likely – 25% · Completely likely – 70% |
The objectives of the meeting were: | · Very clear – 80%
· Clear – 20% · Unclear – 0% · Very unclear – 0% |
To what degree were the meeting objectives met? | · Completely met – 80%
· Mostly met – 20% · Mostly unmet – 0% · Not met – 0% |
What did you like most about the meeting? | · the interactive brainstorming
· the information and the network · collaboration and community · the last session, designing an idea · the interactive part · interactions · diverse perspectives · the information and data collection · this is an educational effort to target the Hispanic/Latino community · good collaboration across different members of the community, researchers and others · the people · all of it · interaction, George Fernandez, Stats · enthusiasm and investment. Very full with good information · “comradery” –everyone seemed to know each other · interaction groups · groups · the breakout session in the afternoon · the diversity and information · presentations |
Where could we make improvements? | · not applicable
· lets make this along and get ahead · keep it up · time · longer hours · time management · how to increase the Latino male participation in male screenings · none · none · make research exiting · more time · don’t know-it was great · additional time to discuss in breakout session · include Hispanic from the community (real people) · not applicable |
What topic do you recommend for a future meeting? | · nutrition
· all · clinical trials and research · talk about the specific types of cancer each time and ways to prevent it · healthcare · more details of which cancers are preventable · genetic testing and clinical trial education · increasing the knowledge of the community · genetic info · collaboration in community · adding vaping to the smoking conversation · community education · best practices |
Would you like to partner with us for cancer related initiatives and research programs in the future? | · No – 5%
· Yes – 60% |
General comments on today’s meeting: | · this is just the beginning
· please count with me to continue participating · excellent · very informative and useful information · thank you · Thanks! |
Appendix
Hispanic/Latino Community Leaders Meeting – June 26th 2019; Hershey Lodge | |||
# | Last Name | First Name | Organization |
1 | Ahuja | Nirmal | Penn State Cancer Institute |
2 | Barba | Guadalupe | Juntos of Lebanon/La placita Restaurant |
3 | Bermudez | Madeline | Penn State College |
4 | Cabezas | Alejandra | Lebanon Welsh Mountain |
5 | Calo | William | Penn State Cancer Institute |
6 | Cenci | Curt | Penn State Cancer Institute |
7 | Colón | Luz | GACLA |
8 | Craig | Marisol | Harrisburg School District |
9 | Delgado | Christiane | Latino Connections |
10 | Dominic | Oralia | Highmark |
11 | Feliciano-Weiser | Madeline | Penn State Health |
12 | Fernández | George | Latino Connections |
13 | Fonseca | Nancy | St. Joseph Hospital |
14 | Gonzalez | Louis | Lebanon Welsh Mountain |
15 | Hohl | Raymond | Penn State Cancer Institute |
16 | Jiménez | Maria | St. Joseph Hospital |
17 | Juris | Aubrey | Penn State Cancer Institute |
18 | LeMelle | Lorna | Penn State Cancer Institute |
19 | Lengerich | Eugene | Penn State Cancer Institute |
20 | Liriano | Cesar | Juntos of Lebanon |
21 | Luquis | Raffy | Penn State Harrisburg |
22 | Marulanda | Katherine | Latino Connections (Christiane Delgado) |
23 | Monterrosa | Isabel | Breast Cancer Support Services |
24 | Murray | Andrea | Penn State College |
25 | Myers | Marcela | Wellspan |
26 | Negrin | Laida | Wellspan |
27 | Nevares | Luis | La Voz latina/ Complete Home Care |
28 | Perez | Damaris | American Cancer Society |
29 | Peters | Jeffrey | Penn State Cancer Institute |
30 | Proctor | Ann | Wellspan |
31 | Quentin | Kiser | Complete Home Care (Luis Nevares) |
32 | Rivera | Elis | GACLA (Luz Colon) |
33 | Rodriguez Colon | Sol | Penn State Cancer Institute |
34 | Rodriguez Fontana | Madeline | Latino Connections |
35 | Rodriguez Rocha | Adelino | Latino Connections |
36 | Sanchez | Luis | Primera Iglesia Asamblea de Dios |
37 | Sanchez | Jamary | Primera Iglesia Asamblea de Dios |
38 | Santiago | Jose | New American Welcoming Center at YMCA |
39 | Seller Miska | Jennifer | Penn State Cancer Institute |
40 | Senft | Joanne | Penn State Cancer Institute |
41 | Sharp | Emma | Penn State Cancer Institute |
42 | Smith | Lisa | Penn State Cancer Institute |
43 | Soto | Noel | Community Leader |
44 | Sotomayor | Enmanuel | Translator services |
45 | Valdez | Sandra | Spanish American Civic Association |
46 | Wilson | Cornell | Lebanon Councilman |
References
- Baltic RD, Weier RC, Katz ML, et al. Study design, intervention, and baseline characteristics of a group randomized trial involving a faith-based healthy eating and physical activity intervention (Walk by Faith) to reduce weight and cancer risk among overweight and obese Appalachian adults. Contemp Clin Trials. 2015;44:1–10. doi:10.1016/j.cct.2015.06.017
- Health Bingo. (n.d.). Retrieved from http://latinascontracancer.org/programs/prevention/health-bingo/
- Platillos Latinos Sabrosos y Saludables … – nhlbi.nih.gov. (2008, April). Retrieved from https://www.nhlbi.nih.gov/files/docs/public/heart/sp_recip.pdf