Asthma Consortium Builds on Lessons Learned


Asthma Consortium Builds on Lessons Learned

Page 56

Community Partnerships

Asthma Consortium Builds on Lessons Learned

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Despite the fact that many exemplary asthma programs exist in Chicago and its outskirts, asthma morbidity and mortality have increased for more than 20 years. Clinicians and other members of the community formed a coalition to address why this city has one of the highest asthma mortality rates in the United States.

The first meeting of the Chicago Asthma Consortium (CAC), a kind of asthma summit, was held in April 1996, due largely to the efforts of the late Alan Shaw, RRT, deputy director of the American Lung Association of Metropolitan Chicago (ALAMC), and Sydney Parker, PhD, vice president for Health and Science Policy at the American College of Chest Physicians (ACCP). They shared a vision that establishing a community-wide health network would make a difference. Both knew of many dedicated, well-respected experts.

Fifty-three professionals from the Chicago area participated in the initial meeting. Most didn’t know about each other’s efforts and successes or the available expertise and resources. They applied for support from the same funding sources, often for similar projects.

The CAC provided networking opportunities and structures for their organizations, enabling them to meet, share, learn and ultimately understand better how to devise effective interventions.

Today, more than 300 individuals and 37 organizations/institutions are now formal members of the CAC. Backed by four years of experience, here are some of the lessons we’ve learned in developing a successful coalition.

Round Them Up
For collaboratives to succeed, all, or most, of the key people must be involved in the entire process. This means including people with a stake in the outcome for asthma–not just the health care community.

That’s why we encourage respiratory therapists, physicians, nurses, asthma patients and their families, educators, community groups, health care executives, government agencies, public health experts, asthma medication and equipment companies, and many others to join our work. By having people “at the table” they become committed to changing the way we do things and working together.

Broad and varied membership adds to the richness of a coalition. Multiple experiences and perspectives are represented, and you can identify issues and potential solutions that might not otherwise have surfaced.

One example is engaging our grassroots community members. We need to incorporate the knowledge and perspective of non-health care professionals. We’ve learned that transportation, family and job responsibilities, and reticence in the presence of health care professionals are barriers to full integration of the CAC’s efforts. We modified our communication methods, meeting locations and schedules to become more accessible, and we have seen an increase in participation.

Have a Vision
Organizations need a mission statement to direct actions and goals. The CAC’s mission is to coordinate the activities of individuals and organizations working in asthma care and to advocate improved care in Chicago, thereby reducing asthma morbidity and mortality and enhancing the quality of life of asthma patients. This is expressed in our vision, “Helping the Community to Breathe Easier.”

Goals of the CAC reflect the multidimensional nature of asthma:

  • Raise the level of asthma awareness in patients, health professionals and the public
  • Promote the appropriate diagnosis and management of asthma by health professionals
  • Encourage asthma patients, regardless of income, color, gender, creed, language or disability to enter into continuing care by facilitating access to care
  • Encourage a partnership among patients, health care providers and payers through evidence-based clinical management and education programs, empowering asthma self-management.

    Bottoms-Up Approach
    To meet these goals, we needed a multi-pronged response to simultaneously address asthma’s various aspects. It’s not enough to simply improve clinician knowledge or raise community awareness.

    Organizing committees is a great way to address each facet of asthma. The CAC is a committee-driven network of many, not a leadership-driven organization of a few. The hard-working groups respond to problems systematically. All members are encouraged to participate in at least one committee; many members work with at least two. Membership means involvement, and people get involved by doing committee work. It’s a bottoms-up approach, with members’ suggestions carrying great weight. Committees also collaborate on an ad hoc basis. The CAC’s current committees include:

  • Access to care: focus on the delivery of quality care in emergency, inpatient, ambulatory and managed care settings, as well as public policy related to access to the health care system.
  • Community: provide a link to groups (community centers, voluntary organizations, parent and school groups) who assist in devising culturally appropriate asthma interventions.
  • Data: collect and evaluate data, report information, seek out sources and identify gaps in our current understanding of the effect of asthma in the Chicago area. The data are then disseminated in a “news you can use” format to enable service providers to better target their interventions.
  • Education: facilitate improvements in educating patients and their caregivers, health care practitioners and the public.
  • Marketing: increase public awareness of asthma in Chicago and the CAC, and the ability of a community health network to make a difference.
  • Membership: identify strategies for enhancing communication and collaboration among members, recruiting and retaining membership and enhancing the value of being a member.
  • School: address issues related to asthma in the school setting, including school policies, environment, practices and procedures.

    Members meet quarterly to receive updates on asthma programs and to network with other members and staff. Featured asthma experts, presentations of asthma programs in Chicago and committee reports make up the agenda.

    Giving Credit
    There’s no limit to what you can accomplish if you don’t care who gets the credit. Flexibility is critical when coordinating projects involving a large number of powerful institutions and individuals. Sensitivity can avoid conflict among individual members and between members and the coalition, especially in an era of limited resources.

    We recognize individual and institutional accomplishments whenever possible, so that the value of some decreased autonomy is worth the price. We all understand that there is more than enough work to go around, and we’re amazed at how much our members have given. By collaborating, individual members and organizations get more credit than working alone. Everyone knows that we cannot beat public health issues in isolation or fragmentation.

    Piecing it Together
    In the poem, The Blind Men and the Elephant, every person described his perception of the entire beast. It was only by bringing together all of the individual pieces did the elephant emerge.

    The same is true for our activities. Asthma is a large and complex problem, involving academic research, professional skill in diagnosis and management, patient and caregiver understanding of the disease, and public/private institutional structures and systems.

    Each is of paramount importance to individuals within those spheres. They zealously express solutions for different parts of the problem as the single most important factor for positive change.

    They are all correct: The work is in helping the pieces fit together.

    Ask For Help
    The CAC’s formation and development were made possible through the combined support of the ALAMC and the ACCP, with significant funding from a local foundation, the Otho S. A. Sprague Memorial Institute.

    When building your coalition, look to sources such as vendors, hospitals, universities and individuals to fund programs and special projects. Also ask for help developing, printing and translating brochures and manuals.

    Many of our members (especially physicians and hospital staff) had already established relationships with pharmaceutical company representatives and others in the business world, and they performed the introductions. These companies understand that improving compliance with the national asthma guidelines will mean increased business for them. Thus, enlightened self-interest eases the “asking” for funding. And the story of asthma in our community is so compelling that it was fairly easy to convince people that we deserved support.

    Other members had access to in-house printing capacity or other support needs, such as meeting and office space. Still others applied for grants and included CAC activities in their applications where it made sense. For example, a data collection and dissemination subcontract with a grant from the Centers for Disease Control and Prevention to one of our board members enabled us to rebuild our Web site, as well as support our annual Data Workshop and printed report. We discussed the need for funding openly at board and membership meetings, as a reminder to all that the coalition needs everybody’s help and support.

    Media Exposure
    “I don’t care what you say about me, just as long as you spell my name right.” Distinguishing ourselves to the public and media as the experts for asthma information is a never-ending process. It’s necessary to ensure that publicly disseminated information is accurate and to encourage new members to join.

    We’ve had some success in placing a few stories about our creation and specific projects in two major daily newspapers and TV outlets by holding news conferences and special events, assisted by professional marketing/public relations staff of our members.

    We frequently send letters to the editor and write Op Ed pieces, some of which have been published. Local community media, including high school and college radio stations, weekly community newspapers and “house organs” like employee newsletters have been very open to our calls and news releases—and reach an audience we would never access through the major media. Chicago also has a vibrant and popular community access cable network, and we have participated in regular programs sponsored by Chicago Public Schools and grassroots community organizations.

    All of this has increased the likelihood that when a reporter has a question about asthma, he or she will call us. But, it’s an unending struggle requiring diligence and frequent contact. Professional advice really helps.

    Think Globally, Act Locally
    Understanding principles is a necessary step, but only the first step in devising effective interventions, which will need to be tailored for the community concerned. Strategies depend on resources and personnel available, as well as on the culture and values of the communities being served.

    When engaged and involved, people from all sectors of society provide input from their perspective with workable solutions for needs that they’re motivated to bring to reality. An interdependent team approach can accomplish much more with existing resources, making a vision a desired future that can really happen.

    Resources

    1. The Chest Foundation, American College of Chest Physicians and National Asthma Education and Prevention Program. 2000. A descriptive study of asthma collations: Spring 2000.

    2. The Chest Foundation, American College of Chest Physicians and National Asthma Education and Prevention Program. 2000. A development manual for asthma coalitions: Spring 2000.

    3. National Asthma Education and Prevention Program, National Institutes of Health, National Heart, Lung, and Blood Institute. Expert panel report 2; Guidelines for the diagnosis and management of asthma. 1997.

    4. Addington WW, Weiss K. Targeting asthma in Chicago: community stories.Chest. 1999 Oct;116(4 Suppl 1):198S.

    Coover is owner of Pediatric Case Management Services and adjunct faculty at the University of Illinois at Chicago, School of Public Health, Epidemiology and Biostatistics. Jackson is president of CLJ Associates and project manager, Community Partners Against Asthma. Both are members of the CAC. Scharf is executive director of the CAC. Dr. Goldberg is director, Pediatric Home Health at Loyola University Health System, Maywood, Ill., professor of pediatrics at Loyola University in Chicago, past-president of the ACCP, chair-elect and member of the CAC board of directors.

    Some of the Chicago Asthma Consortium’s accomplishments include:

  • Emergency department, hospital in-patient and managed care collaboratives, which provided these institutions with the tools to develop and maintain systems and procedures for asthma care in line with National Asthma Education and Prevention Program guidelines.
  • Creation of the CAC Web site, providing anyone access to CAC printed material, announcements, activities and links to other informational sites.
  • Developed a Chicago Asthma resource directory, providing contact information to the community about members and programs. It serves as a convenient way for members to network.
  • Distributed necessary tools and equipment (peak flow meters, spacers) to programs serving individuals and families with nonexistent or inadequate health care coverage.
  • Established a Spanish-language asthma information request line, with members providing responses to voice mail inquiries.
  • Created a patient education materials evaluation tool to assess adequacy and appropriateness of print and electronic materials.
  • Collaborated with the Chicago Public Schools to modify its medication policy to allow students to carry asthma medications on their person, created a parent and community brochure to publicize this change and developed a detailed asthma manual for school personnel. Principals and other administrators attended an in-service on asthma, and every school nurse has been trained with the manual at mandatory in-service meetings.
  • Created patient and professional educational tools to fill perceived gaps and provide on-going educational programs to professionals through the use of problem-based learning techniques, tailored workshops for and with medical specialty societies, as well as groups such as the Parent Teacher Association.
  • Created the Blueprint for Asthma, a compilation of what the various committees have learned about problems, possible solutions and best practices in the field of asthma care; this document now serves as the guiding vision and management template for work plans for the CAC.
  • Provided training and education to state, local and even federal agencies on asthma.
  • Provided technical assistance and support to communities in Illinois and elsewhere in the United States wishing to establish asthma collaboratives.
  • Offered CEUs for physicians, nurses and respiratory therapists.

    Lenore Coover, RN, MSN, Carolyn L. Jackson, RRT, Jura S. Scharf, MA, and Allen I. Goldberg, MD, MBA, FAAP, FACPE, FCCP

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