I have just returned from a wonderful week in Basel (home of many cancer pharmaceutical companies), after having been invited by the Swiss Economic Council to share the story of COLONTOWN at their FutureHealth 2019 conference.
Who would have thought that the future of global healthcare could be found in a business conference in Switzerland! In targeting the patient experience, the organizers of this one-day international event acknowledged what we at PALTOWN already know – that patients are the key to revolutionizing healthcare in the 21st century!
I was very excited to share our success with patient-led communities with conference attendees, who came from business and healthcare sectors from all over the world. PALTOWN’s work – providing support in the form of education, development of individual medical literacy, and the creation of Empowered Patient Leaders™ – demonstrates the transformative power of healthcare driven by patients. It was an honor to be have been invited to this important conference.
In my talk, I introduced the PALTOWN concept of the “quirky”, patient-attracting, “town” – exemplified by COLONTOWN – and educated this business audience about the life-saving outcomes we see every day in our community. I focused on the stories of two colorectal cancer patients whose lives have been dramatically changed by their experiences in COLONTOWN. The first is living with no evidence of disease today, after having been told that she had “one year” to live over 4 years ago. Chris – having learned to be her own advocate in COLONTOWN – pushed to get to a doctor who would listen to her, would get her tumor tested (for genetic mutations and tumor burden analysis), and who would assist her in getting into just the right treatment for her personal situation.
Chris’ outcome would not be this successful today had she not pushed for better medical advice than that which she had been originally given. She is today described as NED, or “no evidence of disease.”
Chris learned how to do this in COLONTOWN, known far and wide as The Patient POWERHOUSE™.
The second story introduced an empowered patient from Switzerland: Conradin Dobeli. COLONTOWN gave Conradin the tools to interact with his medical team, and he not only became an active participant in his care, but designed his own treatment! Conradin – a born scientist – determined that, with study, he could figure out how to attack his mutations by understanding the underlying chemistry and biology at the molecular level. His mutation destruction could result in releasing the power of the chemical treatment, yet in a better, more personalised fashion.
Conradin has become known in Europe (and everywhere!) as “the patient who designed his own cancer treatment.” His personal clinical trial could be referred to as an “N=1” type.
Conradin was there as another speaker at the conference – his wife and collaborator at his side – for all to see and greet. Con is currently – like Chris – NED.
What a story we were able to tell: all about the power of a community like COLONTOWN to change, and even save, lives by empowering patients to put themselves truly at the center of their own care. It is easy to use words like “patient-centric” – Conradin, Chris, and the thousands of other COLONTOWNies show how profound and disruptive this can be when brought to life.
Oh, and how was my visit to Switzerland? It was wonderful. I would return in a heartbeat!
— Erika Brown, PALTOWN CEO and COLONTOWN Founding Mayor