Guest blogger Paul Wicks from PatientsLikeMe explores why Open Access is not just for scientists.
By now, every social media channel you pay even the slightest bit of attention to has probably been saturated with requests for you to sign the #openaccess petition, with additional bonus doses delivered every #OAMonday (Open Access Monday). Happily, it worked – the petition has exceeded 25,000 signatures, which means that the White House will issue a response.
In the meanwhile, I’ve started to see the issue from a new angle. A number of arguments have been made as to why generating political attention for this issue is important for science, but it wasn’t until I read Tom Webb’s blog post on Nature Networks entitled “Confessions of an Open Access Agnostic” that I realized we might be missing an important point that we at PatientsLikeMe have been observing recently: open access is most critical for patients.
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.
PatientsLikeMe was founded by a family affected by amyotrophic lateral sclerosis (ALS), a rapidly progressive neurodegenerative disease commonly referred to as Lou Gehrig’s disease. Life expectancy for ALS averages two to five years from the time of diagnosis. In the case of Stephen Heywood, the brother of PatientsLikeMe founders Ben and Jamie Heywood, it was seven years. Stephen passed away in 2006 at the age of 37, having inspired two organizations designed to help patients like him (ALS Therapy Development Institute and PatientsLikeMe).
As one might expect, ALS patients think about their condition a lot, they have the time to learn all that they can, and they are highly motivated to accelerate the pace of research. A recent post in PatientsLikeMe’s ALS forum, written by Rob Tison, a lay patient with no medical training, exemplifies this:
“I wish clinical evaluations were more quantitative and less subjective… Our disease is not well understood, and it seems that every regular clinic visit offers a great opportunity to learn much more about how the disease progresses, including average and variations of measurable changes in strength measurements related to arms, legs, neck and even tongue. I suspect this data could then be used to add more precision to evaluations between treatment and placebo (control) groups during clinical studies, rather than rely on much less precise and much less stratified data from the use of (functional rating) scores and survival.”
This comment generated an enthusiastic discussion with patients and caregivers, and a number of study abstracts were posted. But, as we know, abstracts only reveal so much. Opening up access to the full methodologies of these papers would help to educate patients even further and help them become critical evaluators of research – not just test subjects, but true participants in research.
Most concerning is the case where patients might be participants in a clinical trial for a new drug and still only get limited access the research results. These patients have sacrificed their time and, in some cases, their comfort, resources and even their safety to help other patients who will come after them. Like other empowered patients, they want to dissect the clinical trial protocols, understand the pre-clinical studies, and gain a balanced view of the pros and cons of a treatment that they hope is successful in clinical trials.
In a disease like ALS, patients may even be gambling with their lives when they volunteer for a study. Unfortunately, some clinical trial drugs for ALS have led to patients dying faster than the placebo group, and in many cases, having participated in one clinical trial rules an ALS patient out from participation in a subsequent trial. In situations like this, I think it is difficult to say that because these patients don’t work at a university or have a PhD they shouldn’t get to read the studies they helped make possible.
Even if an ALS patient doesn’t understand all the scientific details or language, thanks to the Internet, he or she can find someone who does. Coincidence is a strange enough beast that I know PhD-level scientists who used to study the very disease that they would later develop. We should be clamoring to remove the barriers so that gifted and empowered patients can better understand their disease, and perhaps even teach us, the research community, something we’ve been missing.
You might be thinking I’m building too much of a case around one uniquely life-altering disease. But we’ve seen similar patterns in oncology, rare conditions, developmental disorders (where parents become the disease expert), and many other diseases. I would bet that’s only going to continue due to three key reasons. One: our population is living longer. Two: baby boomers, arguably the most resourced generation in history, have started to develop a number of chronic health conditions. Three: increasing percentages of the population have further education.
We are watching a shift in care paradigms, from “doctor knows best” to “shared decision making.” Whereas it was once “doctor’s orders,” it’s now “no decision about me without me.” Business models, different types of open access, latency to openness – yes, there are many details that need to be worked out. But right now it’s time for science to catch up. 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.
Paul Wicks, Ph.D., is director of research and development (R&D) at PatientsLikeMe an online data-sharing platform for patients with life-changing illnesses to find other patients like them, share their disease journey, participate in research studies, and improve their outcomes.
PW is an employee of PatientsLikeMe and owns stock options in the company. The PatientsLikeMe R&D Team has received research funding from Abbott, Acorda, Avanir, Biogen, Genzyme, Merck, Novartis, Sanofi, and UCB.