Patient Involvement in the Future of COPD

John Linnell, COPD State Advocacy Captain

Many of us, as individuals with COPD, wonder what the future holds; not for only ourselves, but more so for the future of COPD. Is the cure right around the corner? Is what I hear about stem cell therapy true? Is a new drug being tested? Is Congress doing anything to help us? Can I do something more? Can I get involved?

YES, you most certainly can, and in ways that could be as easy as sitting at your computer just as you are now!! The fact that you have taken the time to read this means you are already involved in learning more about COPD. Now is the perfect time to become involved in DOING.

John Linnell The easiest way to start, and a very important one, is to join the COPD PPRN, the COPD Patient-Powered Research Network. This is already well underway, but needs more patients to enroll. Joining is easy and can be done from your computer. You are not committing to anything. You are just filling out a simple survey with some health information that is kept encrypted and secure. If you qualify for a future study, you can decide at that time if it is something you would be interested in helping with. Learn more here.

Another avenue is to explore existing clinical trials. Even if you are not interested in participating in a trial, you can see what research is actually being done today! While there are not nearly as many clinical trials for COPD as there are for other major diseases, there is much being done. If you are looking for trials in your geographical area, simply use the 'Advanced Search' feature. Some trials will pay you for your time. Learn more here.

Be aware that research is not only drugs and invasive trials such as coils or valves. For example, my pulmonary doctor does research in “Mindful Awareness,” so I sometimes participate in studies involving meditating and relaxation.

An excellent example of a non-invasive clinical study is the PELICAN Study. It is for adults with COPD who have a prescription for oxygen 24hrs/day, 7 days/week. The goal of PELICAN is to improve the health and well-being of people with COPD and their caregivers. It is as easy as completing a questionnaire and participating in a few phone calls. You don't even have to leave your home! Learn more here.

Legislation and lobbying our representatives both at the state and federal level is a very easy way to become involved...again, right from your computer!! The COPD Foundation and other groups frequently send out blast notices about pending legislation. Links are provided that enable you to write to your legislators with just the click of a mouse!! Obviously, if you want to personalize the form letter and include a personal note as to why this legislation would be of benefit, it would further the cause even more. Join the cause here.

Attend conferences and meetings! Advocacy is extremely effective when done in person. Whether it is a COPD Town Hall or helping to staff a table handing out information at an event for Better Breathers or for the COPD Foundation, it is an opportunity to interact and educate others. A wonderful side benefit of this is being able to socialize with others that have COPD. Having the chance to be with other individuals with COPD is therapeutic and can also be FUN!

In summary, patient involvement is mutually beneficial. It helps researchers, doctors, and the community; but equally as important, it helps the individual with COPD. There is much to be said about the positive benefits of being involved and helping to make a difference.

I invite each of you to join together and help change the face, and indeed, the future of COPD.


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