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Community Building Meeting August 19, 2002 Summary Attendees expressed support for the community-building concept as a tool for empowering emphysema/COPD patients and their families. They also agreed to communicate the outcomes of the August 19 meeting and to perform specific activities. Participants were asked to consider joining NECA, attending or sponsoring a community-building meeting, serving on the Patient/Family Advisory Board, or helping with the patient group directory or Self-Care/Peer Support Program. In their personal stories, patients and others shared the challenges and triumphs associated with emphysema/COPD and provided models of empowerment. Attendees also described their organizational or personal activities related to educating, supporting, or empowering people with emphysema/COPD and their families. Attendees thanked Joel Africk, ALAMC CEO, for hosting the first regional NECA Emphysema/COPD Community-Building Meeting. Joel expressed interest in learning what more ALAMC can do, making the best possible use of resources. ALAMC staff have initiated collaborative efforts that produced the October 29 patient/support group morning session and a tentative February 2003 agenda. ALAMC is determining what it can do to promote/support patient groups. An ALAMC draft document, “Support Group Partnerships: Assistance and Cultivation,” contains suggested timelines for communicating with support groups about the following tentative activities: Ø Conducting annual leadership training sessions, perhaps in conjunction with ISHC Ø Updating patient group lists, with particular attention to those serving people with emphysema/COPD Ø Communicating with groups via the website and quarterly correspondence Ø Offering free subscriptions, Call Center pamphlets, etc, so leaders can copy materials for group members Ø Compiling a resource kit for group coordinators/leaders, including Spanish versions Ø Offering specific office support services Ø Encouraging development of patient support groups in underserved communities, and building on lessons learned in other collaborative efforts, such as the asthma and TB coalitions Suggested Priorities for Collaborative ActionThe following issues were identified as priorities for collaborative and appear on the agenda for the October 30 meeting. · Competitive Bidding (http://www.hcfa.gov/research/dmebid.htm; Medicare Modernization and Prescription Drug Act of 2002, HR 4954 Section 511, requiring competitiveness can be found at http://thomas.loc.gov and by typing in Bill Number HR 4954) · Patients Bill of Rights specific to special challenges of people with emphysema/COPD · Portability and other travel issues (Is it possible to contact the FAA about common procedures, even prices?) · Ongoing National COPD Month · Culturally-appropriate care · Importance of prevention/early detection/early treatment (NLHEP) · Getting professionals to understand the contributions of “patients as teachers” Specific OutcomesNancy Brown, Michener Institute, Canada: Nancy indicated Michener’s interest in making similar presentations about the COPD Educators Program and its resources, the Canadian COPD conference in November 2002, and the Canada COPD Alliance at meetings hosted by attendees. Jim Dudley, Apria: Jim expressed interest in determining what role Apria could play in NECA’s community-building efforts and will provide information about home care issues. David Eubanks and Ed Duller, American College of Chest Physicians: ACCP has provided NECA with booth space in the CHEST Exhibit Hall November 4-6 in San Diego, at which materials related to community-building will be available. Dave also indicated he would try to arrange for an article about NECA in the daily conference newspaper. Ed expressed interest in learning how to improve ACCP efforts to involve patients as “teachers.” Dey, LP: Dey LP will make copies of “Living with COPD” available to attendees and will provide some form of financial support for community-building activities. Donna Frownfelter: Donna will continue to provide information about community-building efforts to local and national APTA contacts and will encourage PT participation. Willard “Bill” Fry: Bill requested a summary of the meeting, including a list of attendees, for the ATS newsletter. Ruth Hill, GlaxoSmithKline: As promoters of efforts to establish national COPD calendar observations, GSK support the community-building concept and offered to “partner” with meeting attendees. Hannah Hedrick and Barbara Rogers: As a 22-year Chicago resident who grew up in the state of Washington, Hannah will coordinate the Midwest and West Coast community-building efforts, when they are approved by the NECA Board. Barbara, as NECA President and Board chair and as a provider of educational seminars, will be involved in these and other community-building activities across the nation. Daryl Isenberg: As a charter member of NECA’s Patient/Family Advisory Board, Daryl guides NECA in developing participatory strategies to involve patients/groups in determining priorities and organizing specific activities. She is working with ALAMC to improve the lung group entries in the Insider’s Guide to Self-Help Groups in Illinois. Daryl will assist other “community builders” in (1) involving patients in self-help groups, networks, or other organizations promoting patient empowerment and (2) providing leadership training and other forms of support for patient group leaders and for health and human service providers wishing to work with patient groups. Jim Kiley, Director, Lung Division, National Heart, Lung and Blood Institute: Inclement weather prevented Jim’s attendance at the August meeting, but he continues to encourage NECA community-building efforts and will present an update of NHLBI activities related to emphysema/COPD at the October 30 meeting. Lovelace Respiratory Research Institute: Bob Rubin, LRRI President and CEO, offered to prepare timely summaries of research activities for distribution at the October and future community-building meetings. Mary Pierce, NECA Board member and Alpha 1 Foundation representative: As a person with double lung transplants, Mary is dedicated to developing a COPD disease management program comprising everything patients and their families deal with. She will assist NECA in its community-building efforts and will suggest strategies for involving the 14 lung associations. Respiratory care national and state organizations: AARC provided information on respiratory care practitioners and home care for distribution at the October meeting. Attendees affiliated with the Illinois Society for Respiratory Care suggested contacting its Home Care Committee to assess interest in ongoing ISRC involvement in community-building activities. Mike Rosenzweig: Mike expressed support for community-building efforts from three perspectives: patient, ATS Public Advisory Roundtable member, and Pulmonary Fibrosis Foundation President. Mike recommended that future meetings emphasize the important of early diagnosis, improved treatment, and patient support. Vlady Rozenbaum, COPD-ALERT owner/moderator: Vlady, a strong supporter of the community-building concept, sent COPD-ALERT materials for distribution at the August meeting and provided a copy of his testimony advocating use of Spiriva for COPD patients for distribution at the October meeting. Carol Southard, Northwestern Memorial Hospital, Wellness Institute: Following the meeting, Carol offered to provide leadership in smoking cessation efforts related to NECA’s community-building and other prevention activities. Judy Whitman, Advanced Respiratory: Judy, a member of NECA’s Patient/Family Advisory Board, provided support for a post-meeting planning session and indicated Advanced Respiratory’s ongoing participation. Jill Winkler, Ruane Communications: Following the meeting, Jill offered to help with communications strategies about NECA’s community-building activities and related activities of attendees.Eileen Zacharias, ARDS Foundation of Illinois: Eileen will provide information about community-building activities via www.ardsil@aol.com and other communications.
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