Title: Alianza Contra el Asma Pedi
1Alianza 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
2Outline
- Alianza overview
- Strengths, Challenges, Strategies in Two Areas
- Community Involvement / Community-Centered
Approach - Data Evaluation / Research Approach
- Experience Integrating Community Research
Approaches
3Who 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
Childrens Hospital - University and research institutions
- UCLA/RAND Program for Latino Children with
Asthma, University of Puerto Rico (UPR) Medical
Sciences Campus
4What 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
5Alianzas 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
6Alianzas 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
7Community-Centered Coalitions Strengths
- The continuous presence and voice of the
communitys 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
8Community-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 communitys sense of urgency, created by
constant reminders of immediate needs
9Community-Centered CoalitionsChallenges
- 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
coalitions activities - Another challenge is to balance the
communitys 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.
10Successful 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
11Strategies 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
12Data 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 of language and cultural
appropriateness for target population
13Data EvaluationChallenges 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
14Experience 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
15Summary
- The Alianza has effectively used coalition
strengths and strategies to overcome the
challenges faced by a community-centered
coalition - The voices of the Alianzas 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 missionthat the members of the Alianza
understand the importance of fighting pediatric
asthma through joint efforts and a collaborative
willby overcoming differences in opinion and
approach