7 Questions: John Walsh on supporting people with COPD
As part of its remit to assist people with COPD and raise awareness, the COPD Foundation is partnering with technology innovators to advance unification of medical devices and research into the condition.
What motivated you to start the COPD Foundation?
In 1989 I was diagnosed with an inherited form of emphysema, Alpha-1 Antitrypsin Deficiency. As a patient with chronic obstructive pulmonary disease (COPD), I saw the need to build an infrastructure to support the millions of people living with COPD and so in 2004 I founded the COPD Foundation. I sought to unify COPD patients, caregivers and healthcare professionals into a single voice for COPD.
Up until this time, much of the attention surrounding respiratory disease was focused on tobacco control and clean air. COPD was the fourth leading cause of death in the United States, yet no one was talking about it! After launching the COPD Foundation, we quickly produced educational materials and developed resources for COPD patients at no charge. Over our tenure, advocacy, research and educational programmes continue to be added to our offerings in order to maximise our service to the COPD community.
Today, nearly 300 million people worldwide live with COPD and it is the third leading cause of death globally, yet few people have ever heard of the disease. Why is it not very well known and what is the Foundation doing about it?
In the past, COPD was recognised only in the context of the specific lung disease being presented (for example emphysema and bronchitis). Complicating diagnosis, even today, is that COPD was considered a disease of the elderly, so people presenting symptoms at a younger age were often either under-diagnosed or misdiagnosed. The possible genetic causes of COPD are just now being explored as much younger populations are becoming diagnosed. The acronym COPD became an ‘umbrella term’ and encompassed all the various lung diseases. While recognising commonality and acknowledging that multiple components could be inter-connected, it left the public with a less clear understanding of exactly what COPD really is. A third complication was that a COPD diagnosis was perceived by the public to be a ‘shame and blame’ disease or, worse, a death sentence. People didn’t seek diagnosis because they felt their lifestyle choice caused their illness, or believed that because it would result in imminent death, there was no point in seeking treatment.
The COPD Foundation was formed with the goal of increasing awareness among the public and the medical community, but also to address misconceptions about the disease. Our efforts focus on promoting early detection and diagnosis to provide better treatment options for patients while we work relentlessly to find a cure for the disease. The Foundation undertakes initiatives in research, technology, education and advocacy that result in expanded services for those with COPD.
What are the biggest challenges COPD patients face? And what types of support, beyond treatment, do they benefit from the most?
The biggest challenge many COPD patients face, in addition to the physical symptoms they battle daily (wheezing, shortness of breath, lack of energy), is the feeling of being isolated and alone. Knowing that there are other people out there just like them, and having a place to meet others online, is critical in helping COPD patients not just exist but thrive.
Last November on World COPD Day, the COPD Foundation launched COPD360social, a branded online community that unites patients, family members, caregivers and medical professionals in a novel online social community. This provides members with a comfortable and secure venue to share thoughts and ideas, ask questions, start discussions, comment on blogs and communicate with peers, thought leaders and community managers. At the same time, members can access the Foundation’s educational materials, support group information, research opportunities and related resources.
How can technology help people living with chronic diseases?
In addition to connecting individuals who may be states, or even countries, apart, technology allows people to learn about advancements in COPD research much more quickly than through traditional channels such as print publications or advertising.
The COPD Foundation is using technology to recruit for a network, the COPD Patient-Powered Research Network (COPD PPRN) which will eventually comprise more than 75,000 patients who have agreed to share their health information and the impact the disease has on their lives.
In June the Foundation co-sponsored a Crowdshaped event with Novartis to explore solutions for COPD patients ‘beyond the pill’. What has happened since then?
One of the themes explored by the group at Crowdshaped was the concept of morning wellness. Many patients said that mornings were a struggle and the lack of integration among the various devices they had to use to get their days started only compounded their feelings of being overwhelmed and exhausted. What if all the different solutions could be integrated under a common platform and, if so, might it be possible to minimise and improve the ‘early morning wellness effort’?
From this challenge the idea of hosting three global hackathons was born. On 19-21 September, in Boston, London and Tel Aviv, the COPD Foundation, in collaboration with Novartis, hosted the Breathe Respiratory Hackathons. These involved innovators from around the world meeting to ‘hack’ into medical equipment for respiratory use, such as continuous positive airway pressure (CPAP) devices, nebulisers, oxygen concentrators and sleep monitors, in the hope of integrating these different solutions and ultimately offering better health outcomes and improved quality of life for patients.
The winning ideas from these hackathons will be presented at the European Respiratory Society (ERS), taking place on 26-30 September. All ideas generated from the hackathons are considered public domain and can therefore be used by any manufacturer to use in the development of new and improved technology.
What should COPD patients be excited about at this year’s European Respiratory Society International Congress?
We are especially excited to demonstrate COPD360coach, a new application we are developing with ViiMed, which will help people manage their COPD better. The app will consist of educational modules, comprised of online videos and courses, taught by health professionals and real COPD patients.
Users will be supported by dedicated peer health coaches who can answer questions and track patient progress using a seamless and coordinated system.
What’s next for the COPD Foundation?
Later this year we will be launching StopCOPD, an Apple ResearchKit which will enable patients to enrol in our COPD PPRN. The Apple ResearchKit is an open source framework introduced by Apple that enables the iOS app to become a powerful tool for medical research. The StopCOPD ResearchKit will seamlessly integrate with a desktop portal, meaning that users can log in to either the ResearchKit or their desktop and start entering data in one place and complete the entry from another.
As we look towards 2016, we will continue to find innovative ways as an organisation to advance knowledge about COPD for our community through the use of technological solutions.
About the interviewee:
John W Walsh is the Co-founder and President of the COPD Foundation, a not-for-profit organisation dedicated to undertaking initiatives in research, technology, education and advocacy that result in expanded services for those with chronic obstructive pulmonary disease (COPD). He was diagnosed with Alpha-1 Antitrypsin Deficiency (AATD) related COPD in 1989.
He is also the Co-founder of the Alpha-1 Foundation, a research organisation that has invested more than $46 million to support Alpha-1 research and research-related projects, and Co-Founder and President of AlphaNet which provides healthcare services to 3,000 individuals with AAT in all 50 US states, Puerto Rico and the Virgin Islands.
Mr Walsh serves on various voluntary health agency committees and governmental advisory committees to represent the voice of COPD patients. In 2002, his contribution to pioneering collaboration in orphan drug development was recognised by the FDA with the Commissioner’s special citation.
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