There’s an app for COPD? (Part 2)
Last updated: February 2019
Read Part 1 to find out more about Kevin's initial thoughts on this COPD application.
I spoke recently with Kristen Willard, the COPD Foundation’s Vice President of Population Health & Care Delivery, who was instrumental in the development of the latest version of the Foundation’s COPD Pocket Consultant Guide App.
Kristen joined the COPD Foundation's office in Washington, DC in 2015 as the Director of Health Outcomes. “COPD has touched my family more than once, most recently in my father, who passed away in 2008,” Kristen says.
I was able to ask her some questions
Kevin - So Kristen, can you please tell me how this all came about? How you became involved in COPD education?
Kristin - I came to this work (COPD Education) given that my father and my grandmother died from COPD.
Kevin – As did my Mom. And how did they refer to it (COPD) at the time?
Kristin – When my grandmother and father were diagnosed, it was referred to as emphysema. Only later was it termed COPD because they were changing the nomenclature at that time.
I think part of my charge is letting folks know this isn't your “grandmother’s COPD.”
My grandmother smoked and used large oxygen tanks. As did many people with emphysema at the time, she was not likely made aware of the benefits of exercise and movement. In those days, she was likely encouraged to use what medication was available, take it easy, and acknowledge that it was just a chronic, progressive disease that would ultimately take her life. And now we know that's just not how we approach it.
Fighting the stigma
I see part of my role at the Foundation as putting information out to patients and caregivers. We have better medications and know more about oxygen, know you need to exercise and that pulmonary rehabilitation is a real benefit to those who use it, and that you can thrive with COPD. It’s a chronic illness that you can manage. We’re also fighting the stigma associated with this disease and using oxygen to manage it.
Kevin - I recently wrote about exactly that for COPD.net. “Vanity.” I think men are actually much more vain than women. For me, it led to problems I had in not accepting the fact that I had COPD because I was embarrassed to walk around with the metal tank and cannula. I didn't find the small compressor, the portable, really effective in the amount of oxygen I needed, especially when I’m working outdoors.
I try to stay active, you know, I work in the backyard.
I was out shoveling snow in the storm the other day (11/15/18) and when my wife came home, she was ready to kill me.
The idea for this app
Kevin - The App – how did it happen, how did it start, how did you arrive at it?
Kristin – This is something COPD patients can show their healthcare providers. There are recommendations that exist for the diagnosis and the management of COPD, but it isn’t practical for healthcare providers to take volumes of paper to the bedside with them. The idea was: let’s provide them with something that serves as a quick reference. The app helps them to interpret and implement these guidelines and provide evidence-based care.
Kevin – And what was the genesis of the project?
Kristin - It started with tri-fold cards. These were laminated cards that would fit into a lab coat pocket, and they included a synopsis of the recommendations that exist for providers in order to provide direct COPD patient care. The cards come in two versions – one is the generic medications and the other includes the brand names.
COPD Foundation distributed 800,000 of those. We would make these available at every event. We also made them available via our online catalog.
From tri-fold cards to a phone app
Kevin - And the app was part of a natural evolution?
Kristin – Yes. People now have their smartphones with them all the time. Healthcare providers are using them in clinics and in hospitals. The Foundation soon realized that an app would be helpful for healthcare providers and created a basic version that was a reflection of the tri-fold card as it existed. With this latest iteration, the Foundation has added many new features and the app reflects our updated evidence base.
Kevin – Such a valuable tool. Did you (the COPD Foundation) develop it yourself? Do you have like a tech firm that you work with? Contract out to? Folks on staff developing?
Kristin – Our internal team included our CIO, Vinny Malanga, Dr. Thomashow (a founder of the COPD Foundation), and a group of pulmonary experts who together updated the app to reflect the evolving evidence base and comorbidities such as depression and anxiety, an exacerbation index, and more. We worked with programmers to bring it to life.
Kevin - As a COPD patient, sometimes you get overloaded with information and sometimes you don’t get enough. This helps quite a bit.
Kristin – I think the intention is for the healthcare provider to use it with the patient and even the caregiver. We wanted this version to have a robust patient education component. So, a series of inhaler videos can be shown by a provider to a patient on a smartphone. He or she can say to them, “Watch this inhaler instructional video, then let’s go through these steps together.” Then the patient can review the video at home or on the go as needed.
I remember when my Dad was diagnosed with COPD, there were so many inhalers and nebulizers, it was hard to know how to use them all exactly right. I’m not even sure I brush my teeth correctly!
Kevin – Will you measure 6 months from now the effect of having this app in distribution? Is it helping?
Kristin - In the next phase of our app, we will be adding more robust analytics capabilities to really see what parts of the app people are finding most useful, what pages they visit regularly and for what duration, and more.
Kevin - Are they (healthcare providers) giving you feedback? Are they saying this works, this doesn't work? We need this function to be improved.
Kristin – We created an advisory council that let us know initially what content would be most helpful in the app. And then they tested the different versions and let us know what worked and what didn’t. I think we will soon start to hear from the community what they find most helpful and what needs to be improved. We look forward to that feedback!
Kevin - Do you see a modified app for someone like myself where I can record data and bring it to my checkups, etc.
Kristin – Yes. I think we would love to create something intended for patients that meets their needs, just like you said. That is incredibly important to the Foundation. It would be wonderful to both educate patients and have them take the app to their providers – excitedly showing them the My COPD Action Plan or an inhaler video. “Look at this!”
We are always looking for input – about how best to get this information into the hands of providers and what would be most helpful to patients. If this group has any ideas, we would be most appreciative.
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