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Archive: March 2019

Research 101 Webinar

Posted on March 26, 2019   |   
Author: Gretchen   |   
0 Comments   |   
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We hope you were able to join us for our March 2019 Research 101 webinar. We are pleased to offer you the full recording from this event here. The recording is free and can be accessed at any time.

During the 50-minute webinar, Dr. Yawn and Dr. Mularski gave an overview of research, the different types of research, questions to ask before participating in research, as well as a breakdown of clinical terms and “big words” associated with various types of studies. They were joined by Pam DeNardo, a patient partner, who discussed her experience with research along with her participation in the COPD Patient-Powered Research Network.

More about your expert speakers

Dr. Barbara Yawn, MD, MSc Dr. Barbara Yawn, MD, MSc is a long-time clinical researcher studying how to improve respiratory care in rural and primary care settings. She is currently the Chief Science Officer of the COPD Foundation and co-PI of the COPD Patient Powered Research Network.

Dr. Mularski, MD, MSHS, MCR Dr. Mularski, MD, MSHS, MCR, leads health services research in the areas of obstructive lung disease, palliative care, and delivery science at the Kaiser Permanente Center for Health Research in Portland Oregon; he is also a Clinical Professor of Medicine and Senior Scholar of Ethics at Oregon Health & Science University. He practices pulmonary and critical care medicine as a Senior Physician for Northwest Permanente where he also serves as Regional Clinical Quality Lead for COPD and is the Director of Research and Evaluation for the northwest KP region. He is a founding steering committee member of CONCERT and co-PI of the COPD Patient Powered Research Network.

Pam DeNardo Pam DeNardo is a COPD patient of 20 years and an advocate with the COPD Foundation in many positions since its inception. Along with Bill Clark and John Walsh, she started the COPD Foundation's Information Line in 2007. And like many here, she is a firm believer in the importance of research but also its misunderstandings among the patient population.


The COPD Foundation would like to thank Dr. Yawn, Dr. Mularski and Pam DeNardo for their participation in the Research 101 webinar. Stay tuned for information on upcoming events!

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Tags: COPD PPRN COPD Registries Research 101 Research Awareness
Categories: Research

Patient & Caregiver Support

Posted on March 07, 2019   |   
Author: Gretchen   |   
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This blog post was written by Amy Leitman, Director of Policy & Advocacy

As a caregiver for a patient with a chronic illness, your role in helping your loved one manage his or her illness and treatment is a vitally important one. The illness takes a great toll on patients, but it is equally impactful on caregivers and family members in other ways.

Caring for a loved one with a serious illness like NTM lung disease or pseudomonas infection can cause great disruption to your life, as you help your loved one with treatments and the challenges of a changed lifestyle. Chronic illness often makes people feel like they have lost control, or that they are overwhelmed by the enormity of this undertaking. These feelings are normal, and neither caregiver nor patient should push them aside or disregard them. It helps for both of you to know as much as possible about the illness and treatments, so you can make decisions together.

It's important to address the emotional and physical issues you face, because each patient needs a strong support system, as does the caregiver, to be a strong support to the patient.

From specialists to primary care physicians to pharmacists and therapists, health care providers are often a valuable source of information needed to help with the ongoing long-term regimen needed to treat NTM lung disease, pseudomonas, bronchiectasis, and other related diseases. Caregivers, listen to your instincts and to your loved one as well. Listen and observe for anything out of the ordinary in case it needs to be reported to the doctor.

The BRONCHIECTASIS & NTM INITIATIVE NTM INFO & RESEARCH and the COPD FOUNDATION websites have several resources available to help patients, caregivers, and loved ones, and we encourage you to use them. Each of these websites have online forums where community members connect and interact.

 

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Tags: Bronchiectasis Caregivers NTM patient support
Categories: Awareness Support

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