Well the doing things differently bit happened when I became a patient. Getting diagnosed with a chronic condition turns your life and those around you upside down. I had so many questions that just couldn’t be answered in a single appointment (sorry Dr Turner for the inquisitions!). So I went head first into the online world and consumed as much as I could. Shift.MS, The MS Society and MS Trust were fantastic resources to try and seek answers. Participating in a clinical trial quite soon after diagnosis was another brilliant way for me to be inquisitive and methodical in understanding what was happening with this disease. But one of the most impactful experiences was meeting another MS’er who was volunteering at the hospital. Her selflessness and want to help others left a lasting impression on us. She epitomised the energy that a lot of patients have, that they have to play their part in some way and do something to give back.
The MS Society, Cancer Research, Diabetes UK and all of the big charities in healthcare are raising funds to pay for future research into new treatments. Their intent is bold, they want to cure these diseases and will continue to raise money for research until that happens. As much as we would like to think that we could run a marathon and raise lots of money, we knew that in reality you’d never get these two couch potatoes at the starting line. So we started thinking… there’s gotta be another way? We knew the research world had thousands of studies where they paid for your perspective, so why couldn’t patients raise money through donating these incentives back to the charities and support groups that are tackling these diseases head on? Taking a survey on your phone from the comfort of your sofa, suddenly made you a fundraiser. We thought that was a pretty cool concept. And so Liberating Research was born!
But we wanted Liberating Research to be more than just taking surveys. It’s a site where patients can share their opinions directly with the industry and get their voice heard through research. We’ve collated and curated information on our Condition Q&A pages that take in some of the new developments, useful materials and hopefully some fun and inspiring stuff that’s on the internet. It is all crowdsourced, so patients will tell us what their most useful blogs, Apps, supplements, activities are so you can see real perspectives, from real patients. We hope you will share with us and fundraise with us, so we can all liberate research.
Carly (CEO) and Dave (CTO)