The COPD Resource Network and Respiratory Therapists

The patient advocacy organization in partnership with RTs offers ANSWERS, and empowerment, for people with COPD.

I have been closely associated with the health profession’s education and practice for nearly three decades. As Director of Academic Services for Central Michigan University’s external degree program, I developed generic undergraduate degree completion programs for health professionals. At the American Medical Association, I helped improve communication among the more than 20 allied health professions (later known as health-related professions) for which it provided accreditation services. For 22 years, I coordinated data collection activities for 50 professions and for graduate medical education (residency) programs in more than 100 specialties and subspecialties.

My personal life was primarily devoted to volunteering with peer support groups for people with disabilities, chronic illness, or life-threatening conditions (primarily cancer and AIDS). Because of spiritual relationships with group members, I was frequently present at the moment of death, caused in the majority of cases by lung failure.

My affinity with lung disease professionals was strengthened by working with C. Everett Koop, MD, on issues related to disability advocacy and to home care for ventilator-dependent children. RTs were my deathbed allies in helping families and physicians understand when continued medical interventions were prolonging suffering. I therefore repeatedly invited RTs to assume active roles in end-of-life initiatives, and some of those people are now in leadership positions in those initiatives.

This lengthy introduction is intended to lend weight to my observations that, in every setting and with every disease state, RTs consistently have maintained the highest standards of compassionate care, professionalism, and patient education and advocacy. While other professional associations may have altruistic mission statements, policies on ethics, and strong lobbying efforts to promote their profession, RTs in the education, practice, and corporate trenches demonstrate every day that they place the welfare of patients ahead of promoting themselves or their profession.

They are, therefore, an ideal fit with the COPD Resource Network, the patient-empowering organization on which I serve.

The COPD Resource Network (formerly NECA, or the National Emphysema/ COPD Association) includes RT representation on its board, medical advisory council, and patient/family advisory council. RTs have been involved with every stage of the organization’s development, including formulating and implementing its seven priority “ANSWERS” areas: advocacy, networking, support, wellness, education, research, and service.

The fit between respiratory therapists and the COPD Resource Network has been demonstrated through numerous specific joint or reciprocal activities. Every issue of the COPD Resource Network newsletter (available at our Web site) has contained information about respiratory care resources or issues, including patient education and support materials, specific COPD resources, and consumer Web sites. The May issue included information on the benefits of RT home health visits to patients, home health agencies, physicians, and Medicare. The 2002/2003 COPD Community-Building Meetings held throughout the country had heavier attendance by RTs than by practitioners of any other profession. Another strong link is the COPD Community Needs Assessment, sponsored by the COPD Resource Network and Alpha-1 Foundation and endorsed by the American Association for Respiratory Care (among others). The survey contains segments for RTs and physicians, as well as for patients.

RT Partner Opportunities
The 36-page fall/winter issue of our newsletter contains descriptions of numerous opportunities to partner with the COPD Resource Network or to participate in premier patient programs, including those listed below. Officers of state societies and individual RTs are asked to contact me if they are interested in participating in any way in any of the following, including publicity.

Strategic partnerships, national and regional. At the national level, the COPD Resource Network has initially entered into strategic partnerships with the National Lung Health Education Program, Lovelace Respiratory Research Institute, National Emphysema Foundation, and Alpha-1 Foundation. Additional invitations will be issued in the near future.

COPD Education Days and other collaborative events.The COPD Resource Network is sponsoring a series of COPD events, including education days, town meetings, and lung health events. A schedule of 2004 national and regional meetings, emphasizing isolated areas with inadequate COPD services, was established at the November board meeting. Invitations to participate will be extended to all respiratory care societies in the states in which collaborative events will be conducted (tentatively Alaska, Colorado, Hawaii, Illinois, Indiana, Minnesota, New Mexico, and Washington).

COPD networks. To provide a context for planning and producing COPD Education Days and other collaborative events, the COPD Resource Network is forming COPD networks, beginning in the areas in which events are being scheduled for 2004. These COPD networks will be asked to pilot the COPD Resource Network’s Premiere Patient Programs.

Self-Care/Peer Support Program. The first tangible Self-Care/Peer Support Program will be a yoga-based breathing and stretching video, developed by emphysema patient Vijai Sharma, PhD, with all participants in the video having COPD. This program also will be the central coordinating point for developing COPD Peer Support Groups in areas where current groups do not meet existing needs.

COPD Peer Support Group directory, resource guide, and tool kit. The COPD Resource Network is identifying lists of current groups, such as the Better Breathers Clubs Directory maintained by the American Lung Association, groups sponsored by rehabilitation and lung centers, state self-help group clearinghouses, sleep apnea groups, and various groups related to smoking prevention and cessation. Via COPD Education Days and other events, patient education and support materials are being collected and reviewed for listing in the directory and inclusion in the tool kit.

Tobacco Awareness Campaign/Action Agenda. The Tobacco Action Agenda developed by the Coordinating Committee of the Tobacco Awareness Campaign was among topics considered at the November meeting of the COPD Resource Network Board. This comprehensive, collaborative plan emphasizes grassroots efforts as well as support by national organizations and other public and private sector groups. Numerous items appear in the fall/winter issue of the newsletter, and our Web site will provide future details.

Patient/Family Advisory Council. The Patient/Family Advisory Council is dedicated to making patient-centered care a reality by mobilizing and facilitating patient/family participation in advocacy, networking, support, wellness, education, research, and service—the seven ANSWERS activities. During 2003, we encouraged members and others to join local support or advocacy groups, be identified with COPD causes, attend Congressional and other public hearings, and participate in appropriate clinical trials. In 2004, the council will develop mechanisms to facilitate participation of patients with severe symptoms or cultural barriers (including health literacy and language barriers). Through our Web site, COPD NetNews, seminars, workshops, and presentations at patient and professional meetings, the council encourages people with COPD and their families to become “activist advocates.”

Hannah L. Hedrick, PhD, is coordinator, Patient/Family Advisory Council, COPD Resource Network. More information about the COPD Resource Network is available at