By Casey Quinlan, CureClick Ambassador/CureClick Advisory Board

CureClick Ambassador Casey  Quinlan

CureClick Ambassador Casey Quinlan

I’ve been a science geek since I was a child. My mother was a complete chemistry nerd, so our time in the kitchen together was as much about cool experiments with food as it was about dinner. I blame what I call The Frog Pithing Incident in my high school biology class for diverting my planned marine science career, but given that I ended up reporting on science in the news business, I still wound up in the front row of scientific exploration as a witness.

Science has, since the dawn of time, been seen by most people as a magical exploration pursued only by rarified beings called “scientists.” Same with medicine, seen as something practiced only by magical beings called “doctor.” Gutenberg’s printing press started a shift in human access to knowledge in 1450, setting in motion the forces that led to today’s Information Age, where the democratization of knowledge, and of science, is becoming a global reality. Thank you, Tim Berners-Lee.

However, as the oft-referenced William Gibson quote goes, “the future is already here, it’s just unevenly distributed.” In the case of scientific research, democratization of knowledge is yet to be evenly distributed because most of the published work that makes up the current state of scientific discovery is entombed behind paywalls at journals like Nature and JAMA. But the rise of open-science journals like PLoS-ONE is pulling down those walls.

I dedicate a good portion of my time to helping build science and medical literacy in the global community. Science is not magic. It does require rigor, and accurate record keeping, and a willingness to be proven wrong, but it’s something that anyone can participate in, and learn from. Which is why I’ve long been pushing the idea that what I call Citizen Scientists have as much to offer as the PhDs and MDs in the ivory towers of academe and pharma.

At a meeting at Lilly, the pharma giant, in November of 2013, I had a light bulb moment, and voiced it as “what if Github and Match.com mashed up, and had a clinical research baby?” That out-loud brainstorm was captured in a tweet by Gilles Frydman, one of the founders of SmartPatients.com.

 

 

What I was getting at was this: why not create a framework for people – everyday people – to share their ideas for, and results from, bio-medical experiments of their own to help advance scientific discovery? It’s not like that’s not already happening. I know several people who have worked on hacking their own illnesses and conditions, including the folks behind the Nightscout project, which is helping diabetics and their families remotely monitor their Dexcom CGM (Continuous Glucose Monitoring) devices using the web, smartphones, tablets, and Pebble smartwatches. And then there’s Brett Alder, who cooked up his own injectable treatment for his rare and chronic condition after a variety of specialist MDs couldn’t successfully treat him.

Humans are innately curious critters. We’re always trying to figure out our world, and possible hacks that can make our lives, and our communities, better.

Which is why, when the opportunity to become an advisory board member for CureClick, it was literally a no-brainer to say “YES!” It fits my mission to enable and empower Citizen Science, and I’m hard at work behind the scenes here to see if CureClick just might be the right place to start building a version of my Github/Match.com mash-up.

Stay tuned for updates!

 

About Casey Quinlan

Casey is a cancer warrior who is a passionate advocate for the e-patient movement, and a journalist covering hospital medicine as the producer of The Hospitalist Magazine podcast series.

She spent two decades in the news business, covering stories for morning shows, documentary series, presidential campaigns, wars, presidential campaigns that turned into wars, the NFL, the NBA, and Stanley Cup Hockey, while also building a following as a standup comic. She once talked her way out of police custody in Saudi Arabia, which helps explain her popularity as a conference speaker, and her nickname, “the Mighty Mouth.”

After getting a breast cancer diagnosis five days before Christmas in 2007, Casey used her research and communication skills — and her sense of humor — to successfully navigate treatment, and then wrote Cancer for Christmas: Making the Most of a Daunting Gift about managing medical care, and the importance of being your own patient advocate.

In 2013, Casey was named an ePatient Scholar at Stanford’s MedX conference. In 2014, she was a panel presenter on Patient & Family Engagement at Stanford MedX, and named a patient engagement expert by the WHO.

How to reach Casey:
www.mightycasey.com
www.cancerforchristmas.com
www.patientsforclinicalresearch.com