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The COPD National Action Plan: Goal 1

Posted on March 15, 2016   |   
12 Comments   |   
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COPD public policy

At the recent National Heart, Blood and Lung Institute's (NHLBI's) first-ever COPD Town Hall meeting, working groups of patients, family members, advocates, healthcare professionals and policy makers gathered to begin work on the COPD National Action Plan, an effort that will help to shape our national approach to all things COPD.

One of their most crucial tasks? To address six challenging goals aimed at optimizing outcomes for individuals with COPD and their families. These were:

  • Empowering patients, their families, and communities to recognize and reduce the burden of COPD
  • Increasing and sustaining prevention, detection, diagnosis, treatment, and management of COPD
  • Increasing collaboration and coordination to sustain surveillance and evaluation to improve collection, analysis, dissemination, and reporting of COPD-related public health data
  • Increasing and sustaining research to better understand prevention, pathogenesis, diagnosis, treatment, and management of COPD
  • Increasing awareness and sustaining COPD education among stakeholders, decision makers, individuals with COPD, their families, caregivers, communities, and populations at risk
  • Integrating recommended policy, educational, and program changes into the legislative, research, public health, and care delivery structures of the nation

microphoneIn a series of PRAXIS Nexus blog posts, we'll discuss each of these goals and gather your thoughts on our next best steps to achieving them.

In this PRAXIS Nexus post, we'll focus on Goal 1: Empowering patients, their families, and communities to recognize and reduce the burden of COPD.

What are they asking? Here are a few ways of looking at this goal -- please share your own, as well.

  • How can we best motivate and support patients, families and the greater communities in which these families live to understand and address the impact of COPD?
  • What tools and resources might be most helpful to achieve this end? 
  • What might our community already be doing right in this area -- and what do we need to do differently ... and when?

Whether a patient or provider, please share your thoughts in the comments below. We look forward to your insight!

Interested in watching the six group report sessions from Day 2 of the COPD Town Hall? You can view them here.

12 Comments



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  • Continue campaign to reduce shame and blame so that more people live openly with COPD and discuss their experiences; provide multiple opportunities to patients and caregivers to ask questions and multiple avenues for them to do so; widespread educational resources for not only patients and families but also for the healthcare community.
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  • Continue to educate and promote awareness of this awful and preventable disease. Continue to stress how important it is to stop smoking. If you are young, stress how important it is not to start.
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  • Develop a state/county speakers bureau to provide a short educational meeting; there are many organizations, schools, religious organizations, libraries (teach them how to do online searches for information and help with cost of medications,) and businesses that might be receptive....start with small groups like a breakfast meet for 5-10 people. Ask what they currently know and then do a Q&A. It is a sensitive topic and a 'lecture' might put them off... Reach out to community/county physicians that treat COPD patients to learn their particular needs. Contact personnel departments with specific goals, i.e. reduce sick days, long range goal, make an annual information meeting a requirement (just like other topics - fire safety, harassment.) Look for corporate buildings that provide other health and live style amenities to see if a rehab section might fit in. Ask local fire department/EMTs what they frequently find when called for someone in respiratory distress. Same with ER nurses. Their attitude toward COPD patients can make/break how a person feels about their disease. While pul rehab is a great learning tool, many patients are still working, are stressed to learn they have COPD, but cannot get time off from employers to attend daytime rehab and/or cannot stop working for financial reasons. Many are too tired at the end of the day to go to late day rehab so the spiral continues. Are any of them offered on weekends? Keep an up-to-date list available to address the cost of medications. Develop a simple COPD brochure that does NOT promote the stigma of smoking for physician waiting rooms, hospitals, libraries, senior citizen group locations and include local ways of getting more information.............hope one of these thoughts will be helpful.
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    • I really like your breakfast idea. Have you tried to put one on and has anyone come to it?
      Reply
  • 1. Take the blame out of the game. COPD is caused by many environmental situations - not only smoking. Patients & their families & doctors need to recognize the signs & symptoms of COPD - then immediately begin treatment. Motivation is low, in many situations, because the implication "it's your fault - you smoked." Bring out the numbers of cases per year - bring out the various heartbreak & pain & social isolation. When it is out in the open & the patients aren't stigmatized, there is more of a likelihood that they will seek care & participate in their care.
    2. Tools - have a huge (HUGE) Personal Service Announcement campaign - numbers, real people, the realities of this illness - and how much more than SMOKING is at fault.

    3. One thing that is "right" - (American Association of Cardiovascular & Pulmonary Rehabilitation) AACVPR pulmonary rehabilitation programs. But, so few are in existence & many of those are losing money. Need to increase by large numbers, the pulmonary rehabilitation programs. No, it won't "cure" COPD, but talk about the positive effects of it (I can go on for 10 pages about this, both as a PhD and a patient!).
    Reply
  • The stigma/shame of COPD is a huge barrier to every aspect of attempting to reduce this disease. If we could get celebrities who have the disease to admit it, talk about it, advocate for it, etc, that could go a long way to changing the negative image and flat out shame. Unfortunately, you usually find out a famous person had COPD after they are dead. This idea might seem silly, but I remember how celebrity advocacy COMPLETELY changed the tide concerning HIV/AIDS, and to this day their funding still far outpaces that of COPD despite the fact that many more people have and die from COPD. Patty Duke recently died; I remember her very well, not for her movies and TV shows, but for being the first celebrity to openly admit that she suffered from mental illness. Almost overnight, it started a public conversation about depression and mental illness in this country. For those of you too young to remember, in the 1980s before she spoke out mental illness was not talked about, and you never read a magazine article about it or heard it discussed openly. The COPD stigma/shame is exactly what keeps many people from seeking treatment, education, and support, and keeps them in the closet. It also reduces public awareness, and thus, funding for research. Worst of all, it makes some in the medical community less-than-committed to serving this patient population to the best of their ability.
    Reply
  • Like so many have already said- take the shame and blame out of the disease. Smoking is not the only cause and patients should not be made to feel that they or their actions are the cause of their disease and that they deserve what they get. Much more education is needed for health care professionals in understanding and managing this chronic disease. Free educational classes for patients and caregivers. Transition of care clinics to help feel the gap between hospital and home where they can come get additional disease management skills and support. HELP with the high cost of inhalers! The price on some them is ridiculous.
    Reply
  • I believe that one of the best ways to get the word out is to get COPD listed as a disability with the federal government and state government's as well. When receiving disability and filling out job applications it asks if you have any of the following disabilities so they may accommodate your illness and provide assistance. COPD is not listed as a disability. The government offers multiple programs to allow people with disabilities to return to work following an illness. COPD is not listed.
    Reply
  • I am proud to wear my oxygen out because it tells people how smoking can affect you. I believe that every doctor's office should have a spirometer so they can check their patients' breathing and hopefully diagnosis COPD early enough.
    Reply
  • When I diagnosed with COPD I resented the fact on the medical report that it was because I abused tobacco. I questioned it, commented that it was more that I was abused, rather than the abuser and I was told that it was an insurance thing.....something to do with pack years....I didn't fully understand it but it seems like all they want to do is claim the reason for COPD is cigarettes, when in my case I think years of chemical furniture stripping had more to do with it.
    Reply
  • I believe a simple breathing test should be included in our annual health check up.
    The time involved is small, and if at that time a problem is suspected further testing could be ordered

    And it would also open awareness and dialog

    Using this procedure may help to find a lung problem in its early stages, or just finding it to address the problem, followed by the appropriate treatment
    At this time, educational seminars, round table discussions with professionals and others who have Copd could help the patient and family understand and adjust. Not everyone is fortunate to be eligible for Pulmonary Rehab, but if they are, this certainly would be an added bonus.

    I had never heard of Copd and was being treated for allergies by my doctor of many years
    I developed a very bad cough and after a few days I woke having trouble breathing and could hardly walk without assistance. At that time I was immediately sent for a chest x-ray and an appointment to see a pulmonologist. I was totally shocked to hear the extent of my disease


    Reply
    • I agree with you so much! Shortness of breath is so difficult to measure that it gets passed off as getting older and out of shape that it gets missed. I wish they would start doing a base line at 40 especially if there are environmental concerns.
      Reply

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