COPD Town Hall Meeting Hosted by NHLBI
The National Heart, Lung, and Blood Institute (NHLBI) hosted the first-ever COPD Town Hall meeting at the National Institutes of Health on February 29-March 1, 2016. This meeting was a critical first step in the development of a National COPD Action Plan to tackle the COPD epidemic in the United States.
The COPD Foundation worked with NHLBI to bring together patients, caregivers, government representatives, medical professionals, and others to address the disparities in government funding of prevention, treatment, and research around COPD. On day one, attendees were assigned to working groups that developed objectives and tactics around one of six goals. The multi-disciplinary teams presented the results of their brainstorming sessions to the broader group on day two. The discussions were broadcasted in real-time to online viewers who contributed to the conversation from their homes.
The following six goals were presented on day two of the COPD Town Hall:
- Empower patients, their families, and communities to recognize and reduce the burden of COPD
- Increase and sustain prevention, detection, diagnosis, treatment, and management of COPD
- Increase collaboration and coordination to sustain surveillance and evaluation to improve collection, analysis, dissemination, and reporting of COPD-related public health data
- Increase and sustain research to better understand prevention, pathogenesis, diagnosis, treatment, and management of COPD
- Increase awareness and sustain COPD education among stakeholders, decision makers, individuals with COPD, their families, caregivers, communities, and populations at risk
- Integrate recommended policy, educational, and program changes into the legislative, research, public health, and care delivery structures of the nation
There were several themes that were found in all six of the presentations, highlighting the greatest challenges that face the COPD community. Common themes included:
- Real progress is going to take an army of individuals and groups working together
- Attitude change and increased engagement amongst the public, providers, patients, caregivers and policy makers is requirement of change
- Growing referrals and access to pulmonary rehabilitation is a short term win that can make a big difference
- Innovative ways of collecting and using data will drive progress
- Increased funding for research must include a greater focus on prevention, public health and translational research as well as growing what we know about how COPD progresses in each individual
The COPD Town Hall discussions and the written National COPD Action Plan are a giant leap forward, but alone these two events will not create the magnitude of change the COPD community needs.
According to Dr. James P. Kiley, Director of the Division of Lung Diseases at the National Heart, Lung, and Blood Institute, in order to launch a new chapter in the journey to cure COPD our community of 30 million strong must raise our collective voice and demand that policies are changed. Without policy change, the new National COPD Action Plan could lay dormant. Without our input, federal agencies who could be the catalyst of wide scale change will continue to sit on the sidelines, and research funding for the vast unanswered questions in COPD will continue to be a mere fragment of what is spent on other health conditions.
The COPD Foundation is committed to making this happen. Together, over the next months and into next year, we will come together to unify messages, mobilize the community and educate policy makers why NOW is the time for action. All of the great input received at the COPD Town Hall event will be compiled with the comments received from those who could not attend and assembled by working groups into the first draft of the National COPD Action Plan. The draft will be posted online in the summer for the public to comment on before it is revised and finalized.
First we must ensure that the National COPD Action Plan represents the scope of the issues that affect those impacted by COPD. If you couldn’t make it to the COPD Town Hall you can still be a part of this process. Here’s how:
The COPD Town Hall was a landmark event for the COPD community but our work is far from done. Join in the conversation and let us know how you will contribute to the National COPD Action Plan today.