WIN 2016
SURVIVEiT supporting patient engagement and care
Matt Ellefson - Founder/CEO, SURVIVEiT, USA
I am providing the patients’ perspective at the WIN symposium. The innovative work that the researchers in the cancer centres and that membership of WIN is doing is just phenomenal and incredible and what I am providing is the viewpoint from a patient perspective. I myself have stage 4 lung cancer and have been living with that disease for almost seven years now. I’m very, very familiar with the challenges that we face as patients every day. So working together with industry to help raise the bar in the delivery of cancer care is what our goal is between SURVIVEiT and WIN.
What role and impact do you think patient advocates have within the clinical setting
There have been some great advances in the innovation, in the research, in treating cancer. In fact, it is moving at the fastest pace it ever has in the history of treating cancer. However, the delivery of that cancer care is still lagging and people still don’t have access to the very best in cancer care. It shouldn’t depend on a person’s age, it shouldn’t depend on their economic status, their sex, their location, where they live. None of that should matter, everybody should have access to the very best in cancer care. At SURVIVEiT that’s what our goal is because it doesn’t exist today. When people are diagnosed with cancer they don’t know what to do. Nobody ever expects to receive a cancer diagnosis in their lifetime, that’s something that we all think happens to other people. But unfortunately one out of every three people worldwide will experience a cancer diagnosis at some point in their life and those odds are very real. People don’t know what to do, unfortunately, and so what SURVIVEiT does is we provide a tool within that first 72 hours of being diagnosed that helps patients get to the very best in cancer care, helps them learn about their disease so that they know what questions to ask their oncologist, they know what’s important during that timeline. Because the decisions that you make in those first few days after being diagnosed are critical in your outcome.
How has your app been received?
It has been received very, very well. We’re a very new organisation, we haven’t even launched our first awareness campaign yet and we’re still doing some testing and we have some test markets trying to make sure that everything that we’re doing is very user friendly in that people can access it in an easy way. We’ve received great feedback from not only patients that have used our mobile platform but also from the medical community. One thing SURVIVEiT does have is we’re an organisation of survivors helping patients but we have the oversight of three advisory boards. We have the oversight of a medical advisory board, a survivor advisory board and a faith leadership board. Through their oversight they’re helping us, helping guide us, with things like ’21 questions to ask your oncologist when you’re diagnosed’. Those came from a survey that SURVIVEiT presented to both our survivor advisory board members and our medical advisory board members. So we’re bringing that medical community together with the patients and the survivors and we’re working together to help solve some of the difficult issues on both sides that occur in not only what a patient is faced with but also that occur in the delivery of cancer care.
How significantly has the role of technology affected the patient experience?
Incredibly. It’s something that is going to change the way people face cancer. If you’re going to reach people that nobody else is reaching you need to do things that nobody else is doing. Rather than expecting the patients and the survivors to come to your facility and be educated and learn about their disease, let’s go to them, go to where they are, go to the places they are on social media. We have over thirty Facebook groups on social media by every tumour type and we communicate on all different social media channels. So it’s a different day and age; many, many people have smartphones today and many, many people have access to apps, they use those apps throughout the day in their life for many different reasons. There’s no reason why they can’t use an app to find the very best in cancer care and that’s what we’re providing at SURVIVEiT, a mobile platform that’s accessible from any mobile device anywhere in the world.
Our vision is a world free from the fear of cancer and I believe that we’re close to that. I believe that in my lifetime we will be able to develop through the medical community and be able to develop medicines that allow people to live in a very, very long term remission and be able to treat their disease as a chronic disease and live a long and happy and productive life.
