I'm Aware That I'm Rare: John Hess


John Hess is one of phaware global association’s co-founders. He and his wife Seema are caregivers to their son, Iain, who was diagnosed with pulmonary hypertension at age 5. Iain is a recent recipient of a double lung transplant. With a background in engineering and technology, John details phaware’s Walk.Talk.Track.™ pulmonary hypertension mobile research application being developed to determine the quality of life of patients living with PH.

Transcript:

My name is John Hess. I am the father of pulmonary hypertension patient, Iain Hess. I am also a co-founder of the phaware® organization (www.phaware.global).

My connection with the community is through my son Iain. Iain was diagnosed at the age of five with pulmonary hypertension, effectively lived through much of his childhood and into his kind of formative adolescence years with pulmonary hypertension. He had pulmonary hypertension for approximately 12 years, until the age of 17. At that point because of failing heart, we chose to go the transplant route. He had a transplant back this January of 2017.

My connection to the pulmonary hypertension community started like many people. I didn’t know anything about the disease, like many people I’m sure, first came the internet and all of the terrifying things that the internet has to say about PH. Community support groups, if you will, and then the Pulmonary Hypertension Association were a resource that we drew upon at the time. Over the years, we’ve certainly created a network of friends, of doctors, of just this broader pulmonary hypertension community. A very tight-knit community to which we are now deeply immersed.

My background is one of engineering and technology. I’ve been involved with various internet type companies over the last 15 to 20 years. And one of the things that I really wanted to do within phaware was to bring that capability to bear for the betterment of the pulmonary hypertension community. One of the things that I’m most excited about that we’re doing is leveraging mobile technologies, leveraging this thing that we often times hear of called the internet of things (IoT) to provide a means to better connect the patients when they’re outside of the clinic to researchers and to their physicians.

Recently, we have created an application that’s called Walk.Talk.Track.™ that is intended to connect researchers with their patients outside of the clinical environment. One of the short comings that we’ve certainly seen today is that clinical research is often times very much focused upon the clinic itself. And there is a vast amount of time between clinic visits where no data is really captured, no information is gained. One of the goals of Walk.Talk.Track. is to bridge the time between those clinical visits.

Whenever you’re developing applications, you need a strong development organization to help you make that happen. One of the organization’s that I’ve pulled into the pulmonary hypertension activities for phaware is a company called DreamOrbit out of Bangalore, India. It’s a team that I’ve worked with for many years, very much trusted. And they are kind of the backbone development for us for the Walk.Talk.Track. mobile application as well as the backend cloud based infrastructure that we’re using for Walk.Talk.Track.

It’s really an exciting time for Walk.Talk.Track. right now. We spent well over a year developing the application. We’ve also spent the last six months developing a complete cloud based infrastructure to store the patient information in a HIPAA compliant way. And to make that data available to clinical researchers. We expect to have some major releases of the product in Q4 this year.

Our first partner with Walk.Talk.Track. is Children’s Hospital in Colorado. With them, we have been working to develop a Quality of Life assessment as well as six-minute walk test capabilities in the mobile environment. It’s an exciting time. We’re going to be going into beta tests here very shortly to assess the accuracy and the quality of the system. Make sure that it’s working as we intend so that we can achieve a wider spread deployment among not only pediatrics but also adults in the pulmonary hypertension space.

We’ve got a lot of exciting things planned for Walk.Talk.Track. We are looking at integration of various wearable sensors into the system. We’re looking at expanding beyond what is currently an iOS platform into Android. And just some really other interesting technologies and things that we’re going to be introducing into the platform.

One of the interesting things about technology is that technology is built upon layers of capability that have been established by previous technologists. It is just the perfect time right now for something like Walk.Talk.Track. You see the convergence of mobile technology, you see the convergence of wearable type technologies. You’ve got Bluetooth, wireless connectivity, all these different technologies come together to allow for the creation of a solution like Walk.Talk.Track. One very significant one that I have to obviously identify is the whole cloud based infrastructure. One of the unique things about Walk.Talk.Track., is that we leverage cloud based systems, yet leverage them in a very HIPAA compliant way so as to protect patient privacy.

I really see phaware as having two incredible strengths. The first strength is around messaging, is getting the world out. The social marketing, all of the non-standard channels that phaware leverages and leverages very well to communicate to not only people within the PH community but to communicate with people of the PH community. Now, highly coupled with that is our technology bent. Now, honestly all of these communication mechanisms that we’re looking at and we’re talking about are technology focused. The other pillar of it is more of a technology software development mobile type of capability that we also bring to the market, which is very unique from a not-for-profit perspective.

Awareness for pulmonary hypertension has been important for me since my son Iain was diagnosed. So many times, we had to explain his condition to other parents or teachers just to make sure that he was in a safe environment. Honestly, with the lung transplant the PH concerns have now kind of gone away. We want to make sure that for future patients of pulmonary hypertension, and for current existing patients of pulmonary hypertension, that the word gets out. It gets out beyond the traditional demographics that know about pulmonary hypertension. We really want to see it get beyond to people that have not heard about the disease, certainly have never experienced it themselves.

My hope for phaware is that it can continue to serve this very important mission of awareness, but also to deliver solutions predominantly technology based. Because that’s what we are, we’re a technology based non-profit, that really helps the patients, the research community and the physicians to better diagnose patients, to better track the progress of patients, and hopefully to ultimately deliver to patients a better quality of life.

My name is John Hess and I’m Aware That I’m Rare.

Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us on facebook, twitter, instagram, youtube & linkedin @phaware #phaware 

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