Respiratory Therapists, along with patients and their caregivers, came together for the annual Respiratory Patient Advocacy Summit on Friday, Nov. 8 in New Orleans, LA. Attendees collaborated to advocate for advancing the quality of care for chronic respiratory patients. Keynote speakers included Val Chang JD, executive director of the Hawaii COPD Coalition, and Troy Fields, board member of the ALS Association Florida Chapter. They set the stage for great discussions about how patients and therapists can work together to meet the needs of the respiratory patient community.
Here for patients
“The Patient Advocacy Summit is a full-day event held the day before Congress,” said Amber Galer, RRT at Shriners Hospitals for Children in Salt Lake City, UT. “It’s an opportunity for the AARC to show support and engage our patients that experience chronic pulmonary disease symptoms on a day-to-day basis. The Summit provides access to information, resources and enables the patients to share their views and concerns with a live pulmonary expert roundtable.”
For Galer, the biggest takeaway for RTs from the Summit is to spread awareness of these leading pulmonary diseases. RTs can push for more attention dedicated to these diseases, resulting in more research, funding, education and pharmaceutical companies. This increased awareness and attention can lead to better patient advocacy in the health care community.
A unique experience
The Keynote speakers make the Summit a unique experience for participants.
“Our keynote speakers are patients!” Galer said. She continued to explain that Chang was only 42 when she was diagnosed with idiopathic emphysema. According to Galer, Chang shared her own experience starting the Hawaii COPD Coalition to spread awareness and defend her rights.
“To highlight responsibilities as a patient and to encourage independence and empowerment to other patients,” Galer said, reflecting on Chang’s work.
Fields shared how he wants to be treated fairly and seen in the eyes of others as an equal.
“As he finalizes his professional career, Troy is eager to dedicate his time to help advance awareness and provide support for ALS related causes,” Galer said.
Applying in daily practice
According to Galer, one of the patient participants “mentioned the caregiver role in patient-centered care is highly neglected.”
“As respiratory therapists we need to include the caregiver role as much as possible in care plans, education and allowing them time to care for themselves, so they have the strength and resources to continue to care for their loved one around the clock,” Galer said.
Patient Advocacy Award
For the third year in a row, this year’s summit included the presentation of the National Patient Advocacy Award, a collaborative effort between The FACES Foundation (Family and Caregiver, Education & Support) and the AARC. This year’s recipient is Kayelene Horne, RRT, RRT-NPS, awarded for her work with pediatric asthma patients at the James Connie Maynard Children’s Hospital at Vidant Medical Center in Greenville, NC. The finalists were Jeff Cain, RRT, and Maureen Lintner, RRT. The award recognizes a respiratory therapist each year who has gone above and beyond in terms of patient advocacy. According to Sharman Lamka, The FACES Foundation president/co-founder, the award recognizes “outstanding respiratory patients that care for and see the person, not just the patient.”
“These are respiratory therapists that help develop new procedures within their hospitals and communities to help patients and families, work with the health care team to improve outcomes, and continue their education in their field to stay on top of new research and innovations,” Lamka said.
The nominations recognize respiratory therapists across the continuum in which they treat patients: hospitals, long-term and short-term care, doctors’ offices, home care, and clinics.
“The respiratory therapist is with us from the day we’re born to the day we die and all of our breathing challenges in between. They are champions of patient/family-centered respiratory care,” Lamka said. “The respiratory therapist is an essential part of the health care team. They exemplify best practices and empower us to breathe easier.”
Lamka explained that the award educates and informs the community on the value of respiratory therapists that are dedicated to the principle that each breath matters.
“They work with patients, families and other caregivers to help improve outcomes,” Lamka said. “Breathing is natural and the essence of life. Patients with lung disease cherish every breath they take.”
According to Lamka, the AARC, The FACES Foundation and the sculpture “Unity” honor the outstanding respiratory professional who strives to make that breath as easy as possible.
The Summit wrapped up with roundtable sessions hosted by representatives from the ALS Association, Dorney-Koppel Foundation, Cystic Fibrosis Foundation, PHAware Global Association, and Alpha-1 Foundation.
This year’s sponsors of the Summit include Sunovion (Gold), GSK, Mylan, Vertex, and Genentech (Silver), and The FACES Foundation (Contributing).
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Steve Bowden is AARC’s Internet Coordinator. He has been designing and developing websites for the association since 1996.
