Patient Voices Heard at Respiratory Patient Advocacy Summit

Respiratory therapists came together with chronic lung disease patients at the AARC’s Respiratory Patient Advocacy Summit in Indianapolis last fall, opening up lines of communication and building partnerships that will ultimately help advance the quality of care for patients.

Amber Galer, BS, RRT, who served as the 2017 Summit coordinator, outlined the benefits for patients and their caregivers.

“This event brings them together to speak with specialists and network with each other,” said the AARC member. “They can basically have time with their respiratory therapists, sitting at a table, just enjoying themselves, and being able to talk to them without being in a clinical setting.”

COPD and CF take center stage

The session kicked off with a talk from Grace Anne Dorney Koppel that highlighted her personal journey with COPD and why she has devoted her life to making things better for other people who suffer from the condition.

Her number one goal: bring COPD out of the shadows and into the spotlight.

Twenty-year-old Claire Wineland followed with an impassioned talk about what it’s like living with cystic fibrosis.

Despite having undergone 30 surgeries and spending a third of her life in the hospital, this young woman regularly speaks before groups like the one that gathered at the AARC Summit to explain how a chronic lung disease should not define what someone can do or how other people view them.

“How do we help other people realize that there’s not a difference between someone who’s sick and someone who’s healthy?” she asked her audience.

Recognizing RT advocates

Summit attendees also took time out to recognize outstanding respiratory therapists in the area of patient advocacy with the inaugural National Respiratory Patient Advocacy Award, sponsored jointly by the AARC and The FACES Foundation.

Christine Hartling, MHS, RRT, RRT-NPS, took home the top honor, with Jeff Cain, RRT, and Jamie Causey, BSRT, RRT, AE-C, as finalist awardees.

Hartling summed up what it means to advocate for patients and how simple it is to do it.

“Every single respiratory therapist is an advocate,” said the AARC member. “They’re an advocate for their profession, they’re an advocate for their patients, they’re an advocate for themselves. It’s action. That’s all that advocacy is — action.”

Sharing insights and information

Action was in full evidence during a roundtable session that brought patients and caregivers together with clinicians to share insights and information about chronic lung disease, and everyone left with a better understanding of these conditions and feeling their voices had been heard.

Said COPD patient advocate Orlan Holmes, “I know my body better than you do, so if I tell you that something’s wrong or I think that you need to modify something, you need to listen to me.”

He believes his clinicians have done just that and he wants them to know he appreciates it. “I know I wouldn’t be here without pulmonary therapy,” said Holmes.

Resources for patients

Looking for ways to engage with your patients? Explore AARC’s patient informational tools to help you guide your patients toward healthier living.

Aerosol Guide for Patients

Supplemental Oxygen Information Brochure

Health Tip Sheets for Patients

COPD Toolkit

The Summit was sponsored by the Pulmonary Hypertension Association, Pulmonary Fibrosis Foundation, and American Lung Association. Platinum Level Sponsors were Boehringer Ingelheim and Sunovion. Gilead, Vertex, Mylan, and GlaxoSmithKline served as Silver Level Sponsors. Contributing Sponsors were Genentech, Novartis, The FACES Foundation, and Praxair Healthcare Services.

The 4th annual Respiratory Patient Advocacy Summit will take place in conjunction with AARC Congress 2018 in December. Stay tuned for information on how you and your patients can be a part of this outstanding program to bring RTs together with the people who depend on them for care.