ICC collaboration with JTD
ICC COLUMN: The Voice of the Patient
ICC collaboration with JTD
Lawrence Grouse
University of Washington School of Medicine, Gig Harbor, WA, USA
Corresponding to: Lawrence Grouse, MD, PhD. 8316 86th Ave. NW, Gig Harbor, WA 98332, USA. Email: lgrouse@u.washington.edu.
J Thorac Dis 2012;4(4):343-344. DOI: 10.3978/j.issn.2072-1439.2012.08.05
The global respiratory initiatives founded by the US National Heart, Lung, and Blood Institute (NHLBI) and the World Health Organization (WHO) were created in 1992 in collaboration with Drs. Claude Lenfant, Director of NHLBI, Suzanne Hurd, Director of the Division of Lung Diseases, NHLBI, and Nikolai Khaltaev of the Non-communicable Diseases Branch of WHO; Lawrence Grouse, MD, PhD was the Coordinator and Executive Director of these initiatives. Global leaders in respiratory medicine such as Profs. Romain Pauwels, Nanshan Zhong, Tim Clark, and others brought the new clinical practice guidelines to colleagues worldwide.
Following the establishment of the Global Initiative for Asthma (GINA) in 1992, there were several global efforts to improve COPD diagnosis and care by these leaders. In 1996 the Global Initiative for Chronic Obstructive Lung Disease (GOLD) was founded by these leaders and Dr. Grouse founded the International COPD Coalition to help unite the COPD patient organizations of the world and the US COPD Coalition in collaboration with NHLBI with the goal of uniting US lung organizations, COPD patient organizations, and government agencies to prevent COPD and care for COPD patients.
The ICC has partnered with key international organizations who are committed to COPD care, including the European Federation of Asthma and Airways Diseases Patient Organizations (EFA), the Australian Lung Foundation (ALF), the Japanese Respiratory Society (JRS), the Chinese COPD Alliance, WHO’s Global Alliance against Chronic Respiratory Diseases (GARD), the Journal of Thoracic Disease (JTD), and the World Organization of Family Doctors (Wonca).
In 2010, under the leadership of ICC Chairs, Profs. Nanshan Zhong, Rongchang Chen, and Yousser Mohammad, ICC pioneered the COPD Patient’s Bill of Rights that COPD patient groups worldwide could work with their national health ministries to advocate for COPD paitents (1). The ICC has established an evidence-based resource center concerning the global COPD burden of disease, and is working with the Chinese leaders of the early COPD diagnosis initiative and Wonca to support improved respiratory health and the prevention and early diagnosis of COPD globally (2-5).
These collaborations and the leadership of the Journal of Thoracic Disease in providing scientific evidence and perspective to the physicians of the world to benefit COPD patients have led ICC to endorse the Journal and to participate in providing a regular ICC column in the Journal with the global efforts of COPD patient organizations to work with lung physicians and experts to deal with the global COPD epidemic. In the next issue of the Journal, Mr. John Walsh, the Executive Director of the US COPD Foundation and close collaborator of the US COPD Coalition, the NHLBI, and the Alpha-1 Foundation, will present the details of the highly successful activities of the Foundation in the US in a way that should assist and inspire other COPD organizations worldwide.
ICC development
The International COPD Coalition was founded in 2003 as a global umbrella organization for all national COPD patient organizations. Its 75 full member national organizations and 28 participating members have endorsed the ICC’s constitution and by-laws and its goals and objectives. Overall direction of the non-profit organization comes from the Chairs, currently Profs. Zhong Nanshan and Chen Rongchang from Guangzhou, China, as well as the 10 member global Board of Directors. Dr. Lawrence Grouse is the Executive Director.
ICC mission statement
The purpose and mission of the organization is to lead a global coalition of COPD patient organizations to promote health and improved quality of life among COPD patients through:
• planning, managing, and financing projects to improve the health and access to care of COPD patients in collaboration with an international coalition of COPD patient organizations;
• raising COPD awareness worldwide in collaboration with an international coalition of COPD patient organizations and other stakeholders in COPD;
• providing support for preventive, diagnostic, and therapeutic measures for COPD as part of basic healthcare;
• promoting better care and quality of life for patients with COPD.
These purposes shall be achieved especially in cooperation with recognized medical and professional organizations, NGOs, health authorities and ministries, health care providers, and other interested international organizations.
Acknowledgements
Disclosure: The author declares no conflict of interest.
ICC description
We are a non-profit organization comprised of healthcare professionals and patients, and we work with other COPD patient organizations globally to further educational, awareness and other projects to improve the health and access to care of COPD patients.
COPD is the 3rd greatest killer worldwide but most people, including healthcare professionals, do not know about it. It is a disease that deprives its victims of their breath; however, it is a preventable and treatable disease. It is our mission to improve COPD prevention and treatment worldwide.
In 2012, ICC plans to promote and implement the early diagnosis of ICC COPD initiative globally. ICC is collaborating with the Journal of Thoracic Disease in a regular ICC column to share COPD patient issues with the global thoracic medicine community. We intend to further expand the ICC Evidence- Based Resource Center to document COPD care best practices for all of our 75 ICC Member Organizations, and to provide advocacy materials including the ICC COPD Patients’ Bill of Rights. All of our materials will be freely available on our open access ICC website (www.internationalcopd.org). ICC’s Executive Committee and GRADE Committee will review COPD practice guidelines for compliance with WHO, GRADE, and AHRQ/IOM requirements. It will continue its collaboration with the WHO’s Global Alliance against Chronic Respiratory Diseases (GARD), and it will develop patient teaching videos for global use in COPD patient education. These activities will be supported by the grants that ICC receives.
References
  • Grouse L. COPD patients’ rights: Can they be won? J Thorac Dis 2012;4:206-11.
  • Zhong N. Nipping it in the bud: An inspiring mission for prevention and management of COPD. J Thorac Dis 2012;4:102-5.
  • Grouse L. The rise of a non-communicable disease epidemic. J Thorac Dis 2012;4:238-9.
  • Bhome AB. COPD in India: Iceberg or volcano? J Thorac Dis 2012;4:298- 309.
  • Grouse L. New Studies address urgent need for early COPD diagnosis. J Thorac Dis 2012;4:19-21.
Cite this article as: Grouse L. ICC collaboration with JTD. J Thorac Dis 2012;4(4):343-344. doi: 10.3978/j.issn.2072-1439.2012.08.05

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