A native of Glasgow, Scotland, Graham Steel is a longtime “Guest Researcher Member” of PatientsLikeMe. Following the death of his brother Richard at the age of 33 from a rare condition known as variant Creutzfeldt-Jakob Disease (vCJD), Graham became involved in patient advocacy work, and most recently, in lobbying for open access to published scientific research. Find out how this active blogger and Tweeter developed a passion for data sharing in our interview below.
1. Tell us how you first got involved in patient advocacy work.
As per my PatientsLikeMe profile, this started in 2001. Two years after the loss of my only sibling to vCJD, I was approached by a UK organization called the Human BSE Foundation to act as their Vice-Chair. Quite a daunting task for a 33-year-old!! I was involved in that capacity until 2005. Over the years, my interests in science and information sharing to this day continue to diversify.
I’m a great believer in complete openness and transparency as anyone who knows me in real life or via the Internet knows. One of my key assets seems to be “connecting people,” something that I started doing at the age of four. I enjoy making new connections and this is made so much easier with the advent of the web.
2. You’ve been a member of PatientsLikeMe since 2007. What key changes have you seen the site go through in that time?
I am not 100% sure where I first found out about PatientsLikeMe but it was most probably via the main ALS TDI Forum. I’m not a “regular” PatientsLikeMe forum poster with only 197 posts since February 2007. Some key changes that spring to mind: the addition of a PatientsLikeMe blog was a great development. A couple of years ago, a “Share This” button was added to the blog making it much, much easier to share content via social networking sites, etc.
The PatientsLikeMe platform itself has expanded in many ways since 2007. At that time, if I recall correctly, ALS/MND was the only disease covered. Now, that has increased to >1,200 conditions, so that alone is a major development. New features get rolled out on a regular basis and they are accompanied with good and clear explanations. It’s also much easier to ‘drill down’ to/for specific content, and the site is generally simpler to navigate than back in 2007, IMHO.
3. You have recently campaigned for open access publishing. Why is this important to patients?
Yes, as of late 2006, I stumbled upon my first Open Access (OA) Manuscript, as it happened via Public Library of Science Pathogens. Up until that point, I had assumed that ALL Scientific, Technical & Medical (STM) content was locked up behind paywalls. As such, it was very enlightening to discover an alternative to traditional publishing. As matters stand though, only ~15% of Peer Reviewed STM Manuscripts are OA, and subscription-based publishing is still “the norm.” The reason that I became part of the OA Community was to use my networking skills to make more people aware of and involved in OA. OA itself however is just one cog (but a significant one) in the wheel of Open Science!!
“Why is OA important to patients?” Where does one start?! One of the best recent responses to that question comes from PatientsLikeMe’s very own Dr. Paul Wicks with his guest post over at the Public Library of Science Blogs dated June 14th, 2012, and entitled “Open Access Is Not For Scientists. It’s For Patients.”
Two key sections of that post that stood out for myself most were:
“In the past six years, we’ve found that more and more patients are trying to access research studies written about them, including studies where they were participants. In addition, they are increasingly capable of understanding them. Yet closed access is locking them out of better understanding their conditions and their choices.”
“As a society, we need to recognize that our understanding of disease doesn’t belong to science. It belongs to the patients (who are also usually our funders, by the way), and we should exist only to serve them.”
4. What do you see as being critical for the future of patient advocacy?
The Internet, Open Data and The Semantic Web. In terms of the sharing of data from patients, PatientsLikeMe was the first platform (that I am aware of) that made it easy for patients to share their data online with others. Whilst this data is “open,” it is open to the PatientsLikeMe community (and selected others) but not open at large. As stated in June this year by Sir Paul Nurse, “the President of the Royal Society said there was a need to put safeguards in place to protect confidentiality.” Sir Paul said that in reality no data was “totally secure” and that doctors already relied on personal information for treatment. “If you want a complete guarantee of privacy you would have to diagnose and treat yourself,” he said. (Also, see the recent “Science as an open enterprise” report by The Royal Society).
In terms of the semantic web and link data, entities such as http://linkeddata.org/ and http://www.linkeddatatools.com/ have a lot of potential in terms of what we can do in a linked up world. Also in June, in his talk at TED Global entitled “Unreasonable People Unite,” John Wilbanks made a number of interesting points. From the TED Blog:
“Wilbanks’ proposal is a medical commons, a way for people to gather this medical data and share it freely. People are neurotic about privacy and keeping control of their data. ‘Some of us like to share as control.’ And, he believes we live in an age where people agree with him. He mentions a study run at Vanderbilt University in Tennessee. ‘It’s not the most science-positive state in America,’ he says. ‘Only 5% wanted out. People like to share if given the opportunity and choice.’ And not using this data to understand health issues through mathematical analysis ‘is like having a giant set of power tools but leaving them not plugged in while using hand saws.’”