Patient and Clinician Engagement in Treating Pulmonary Fibrosis–A CHEST Foundation Webinar
By: Chloe Daniels
February 14, 2018
The Problem
Understanding where the patient is within their progression of pulmonary fibrosis, as well as any emotional barriers and stigmas, allows clinicians to treat the person rather than just the disease. Meeting patients where they are empowers them to speak directly about the concerns and issues they currently face. At the same time, chest medicine clinicians who have a more objective picture of their patients’ progression can tailor treatments and better create an atmosphere where patients are willing to engage and feel motivated to take charge of the management of pulmonary fibrosis.
The Solution
With this clear understanding of discussing the best ways to bring together patients and clinicians for better engagement, CHEST Foundation, in partnership with Boehringer Ingelheim, presents this webinar on Patient and Clinician Engagement in Treating Pulmonary Fibrosis as a part of a three-part series. Other webinars in this series will address patient and clinician engagement related to COPD and asthma. This webinar will feature patient advocacy partners, clinicians, caregivers, and patients, and each will focus on how to create a planned discussion specific to each disease. Learn more about our panelists for the webinar below.
Panelists
Carolyn Adams-Duda is a pulmonary fibrosis warrior, wife, and mother of three. Carolyn was diagnosed with pulmonary fibrosis in February 2015 at the age of 51. Her courage and passion to not only share her story but to change the lives of patients and families living with pulmonary fibrosis is inspiring. Being a patient with pulmonary fibrosis does not define Carolyn; the time she spends with family and friends, working full-time, running in races, and staying active constitute who she is. Carolyn Adams-Duda makes every breath count.
Gregory P. Cosgrove, MD, FCCP, is Associate Professor in the Division of Pulmonary, Critical Care and Sleep Medicine at National Jewish Health, Denver, CO, where he holds an endowed chair in interstitial lung disease. He also serves as the Chief Medical Officer of the Pulmonary Fibrosis Foundation where he is collaborating with various partners to stimulate the development and evaluation of therapies for pulmonary fibrosis, utilizing the resources of the PFF Care Center Network and Patient Registry. In collaboration with the other members of the Interstitial Lung Disease Program at National Jewish Health, he is investigating novel therapies for interstitial lung disease. His basic science research focuses on altered wound repair within the lung and dysfunctional fibroblast phenotypes. Dr. Cosgrove is the recipient of a Parker B. Francis Fellowship in Pulmonary Research and an Outstanding Junior Faculty award. He is a reviewer for the the journal CHEST®, American Journal of Respiratory and Critical Care Medicine, the American Journal of Respiratory Cell and Molecular Biology, Arthritis and Rheumatism, the European Respiratory Journal, and PLOSOne.
David Lederer, MD, MS, FCCP, is a pulmonologist and Associate Professor of Medicine and Epidemiology at Columbia University Medical Center in New York, where he cares for adults with interstitial lung disease. Dr. Lederer is the Co-director of the New York Presbyterian Hospital’s Pulmonary Fibrosis Foundation Care Center at Columbia. He leads the NHLBI-funded Pulmonary & Intensive Care Translational Outcomes Research (PICTOR) Group at Columbia, where he studies quantitative CT-based methods of detecting early lung inflammation and extracellular matrix remodeling years before the onset of pulmonary fibrosis.
He studies the roles of obesity, sarcopenia, and frailty as clinically relevant body composition phenotypes in adults with advanced lung disease. His work has uncovered disparities in accessing subspecialty care and lung transplantation services in the United States, focusing on delays in referral, race, ethnicity, and short stature. Dr. Lederer is the Editor-in-Chief of the Annals of the American Thoracic Society and serves as a Senior Medical Advisor for the Pulmonary Fibrosis Foundation. He is a standing member of both the IRAP Study Section at the NIH Center for Scientific Review and the NHLBI K23 Study Section. He is a member of the American Lung Associations’ Scientific Advisory Board and the FDA Pulmonary-Allergy Drug Advisory Committee. Dr. Lederer blogs at PFDoc.org for patients with pulmonary fibrosis.
Michele Peters is Current Support Group Leader for patients and caregivers facing pulmonary fibrosis. She is a former Pulmonary Fibrosis Foundation ambassador, Executive Director of Team Jeffery for Pulmonary Fibrosis, a 501(c)3 corporation dedicated to raising awareness of pulmonary fibrosis, providing education, empowering patients and families, and including supporting research. Michele was also a caregiver to her husband Jeffery, who was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2010 and passed away in 2015.
In time, Michele learned that life does go on, even with a diagnosis of IPF. With the support of other caregivers and patients, as well as the information available to them, Michele and Jeffery found the help they needed. They learned about clinical trials and decided to participate to help further research about IPF. Michele also learned a valuable lesson from another caregiver: Making time for herself didn’t mean she was being selfish.
Today Michele takes things one day at a time, cherishing the happy moments and memories. Even though she lost her husband to this awful disease, her resolve to keep promoting awareness and fighting for the pulmonary fibrosis community is ever stronger. She feels it is the best way to honor Jeffery, who fought so hard.
Patti Tuomey, EdD, joined Josephinum Academy of the Sacred Heart in April 2017 and currently serves as President. She previously served as President and CEO of the Pulmonary Fibrosis Foundation for several years, where she led the growth of the organization including the establishment of patient and caregiver programs, research initiatives, as well as awareness and volunteer programs. She held positions at the School of the Art Institute of Chicago, the Peggy Notebaert Nature Museum, and The Field Museum. She has taught management and marketing courses at both The School of the Art Institute of Chicago and Northwestern University. Dr. Tuomey graduated from Marquette University with a BA in Education and Political Science and received an MA in arts administration from the School of the Art Institute of Chicago and a Doctorate of Education from Benedictine University.
Register for the webinar Patient and Clinician Engagement in Treating Pulmonary Fibrosis on February 28, 2018, 12:00 pm CST.
After registering, you will receive a confirmation email containing information about joining the webinar.