Alianza Contra el Asma Pediátrica en Puerto Rico (Allies Against Asthma in Puerto Rico)

1. Alianza Contra el Asma Pediátrica en Puerto Rico(Allies Against Asthma in Puerto Rico) Marielena Lara, Principal Investigator Edna Pacheco, Executive Director Rita Rivera, Community Director

2. Outline • Alianza overview • Strengths, Challenges, & Strategies in Two Areas: • Community Involvement / Community-Centered Approach • Data & Evaluation / Research Approach • Experience Integrating Community & Research Approaches

3. Who is the Alianza? A community-centered asthma coalition in Puerto Rico, founded in January 2000, and composed of: • Local community leaders and organizations • Americorps Vista, Lideres Independientes de Luis Lloréns Torres, Luis Lloréns Torres’ Resident Councils, Head Starts and Schools, Martinal Properties, Inc., Police Department • Island-wide organizations with expertise and commitment to asthma, high-risk communities, and/or coalition work • APNI, ASPIRA, Banco Popular of Puerto Rico, Quality for Business Success, Inc. , Puerto Rico American Lung Association • Health care providers and systems • Luis Lloréns Torres Diagnostic and Treatment Center, Medical Card Systems, San Jorge Children’s Hospital • University and research institutions • UCLA/RAND Program for Latino Children with Asthma, University of Puerto Rico (UPR) Medical Sciences Campus

4. What is unique about the Alianza? • Our mission is to serve the child population with the highest asthma prevalence in the United States • Our target population is the largest housing project in the Caribbean • We are an organization that integrates multiple approaches, disciplines, and experiences, including: • strong community leadership & participation from the beginning • health care system change capacity related to local care financing & organization structure • special research & evaluation expertise with the target population

5. Alianza’s Vision & Mission Vision: Establish a model health services program in Puerto Rico to improve the quality of life of children with asthma and their families, through community intervention strategies and interagency collaboration agreements. Mission: • Develop a pilot model in the Luis Lloréns Housing Project within three years • Prepare this community for sustaining services by itself after these three years • Develop strategies for disseminating the model in Puerto Rico and for working with other communities

6. Alianza’s Action Plan Strategic Areas • Empower children with asthma and their families/caregivers • Increase community awareness and knowledge about asthma • Improve access, quality, and financing of asthma health care services • Improve collaboration between the health care system, schools, child care centers, and other private and public community agencies

7. Community-Centered Coalitions: Strengths The continuous presence and voice of the community’s leadership in decision-making and implementation, have been key for: • engaging/motivating broader community participation and awareness • designing interventions that “really” work in the community • recognizing complex risk factors and developing solutions in a high-risk environment with immediate pressing social concerns • building community-based capacity for interventions that are sustainable after the grant period

8. Community-Centered Coalitions: Strengths (Continued) • Some key Alianza successes can be attributed to strong community leadership, advocacy, and political visibility • These include: • Participation in community-friendly health fairs and educational activities that provide entertainment and other incentives for community-wide attendance • Interagency agreement to pilot enhanced asthma services and health care coverage to the intervention community • In-kind and cash contributions for Alianza activities • Other coalition partners’ actions galvanized by the community’s sense of urgency, created by constant reminders of immediate needs

9. Community-Centered Coalitions:Challenges • Communication gaps and clashes related to differences in social norms, personal attitudes, training, and previous experiences • Power and role conflicts among the community leadership, and other coalition staff and leadership • Other challenges illustrated by Steering Committee members’ comments: • different expectations and priorities about coalition’s activities “Another [challenge] is to balance the community’s perceptions of need for services and immediate action with the expectations and requirements of the funding agency and the procedures of the academic grantee institutions.” • developing trust between community and university partners “One of our challenges is to articulate and promote adequate communication between the community and the university environments.”

10. Successful Strategies for a Community-Centered Coalition • Acceptance: these kind of challenges are normal and part of coalition work • Promote Communication: use a neutral facilitator who is sensitive to the community perspective • Clarify Expectations & Agreements: • Delineate clear roles and responsibilities • Establish mutual expectations and make partners accountable • Principle-Guided Conflict Resolution: • Use basic principles to guide actions: 1) respect all perspectives, since all are necessary to achieve the goal 2) maintain a community focus: whatever is done has to work in the community setting • Perseverance: try over and over to communicate in language that everyone understands

11. Strategies to Build Trust Between Community & University Partners • Develop a common sense of mission: partners need to feel they gain from effort and are not being taken advantage of • Promote collaboration and a sense of team effort: community partners need to feel that their input is essential • Carry-out activities that have an immediate benefit while the “master plan” is still in the works • Employ members of the community • Work with community partners to ensure safety of research staff in high-crime areas • Recruit staff who have the skills and willingness to work directly with the community

12. Data & Evaluation: Strengths • Data for both case-finding and program evaluation are available from more than one source: • Population-based survey in the target community • Claims data • Managed care company asthma registry • Population-based survey integrates both research and community approaches, including: • Incorporating previously tested survey questions to permit comparison to national data • Reviewing and pilot-testing of survey questions and protocol by a joint community-research team • Adapting and evaluating language and cultural appropriateness for target population

13. Data & Evaluation:Challenges & Strategies Challenge: Research processes can be at odds with “grassroots” approaches • Random sample study design versus providing service to all children • Validated survey instruments versus quicker community methods Strategies: • Articulate combined purpose: survey can be used to identify and assess needs of children and families; evaluate what intervention components work; justify need for more funding • Mutual education: researchers learn about community strategies; community leaders learn about survey methods • Team approach: develop creative solutions that meet both community and research needs

14. Experience Integrating Community & Research Approaches • The research team adapted the National Asthma Survey to develop a Puerto Rico Childhood Asthma Survey in Spanish • A joint community-research team conducted several “mutual education” & “pre-piloting” sessions to: • Evaluate whether the questions would be understood by the target population • Outline modifications of the survey protocol to make it more community user-friendly without compromising research needs • In the near future, plan to use similar process to: • Complete pilot-testing of the survey and protocol in the target community • Carry out data-collection and quality-monitoring activities for baseline evaluation

15. Summary • The Alianza has effectively used coalition strengths and strategies to overcome the challenges faced by a community-centered coalition • The voices of the Alianza’s Steering Committee summarize it well: • “The Alianza has gained the trust of those who work directly with the community, and that day after day work hard to improve the health of the community” • “We have been successful in establishing a sense of mission—that the members of the Alianza understand the importance of fighting pediatric asthma through joint efforts and a collaborative will—by overcoming differences in opinion and approach”