The magnetic resonance image on the right is my heart. It was taken a little while back when I took part in a clinical trial investigating the genetics of heart abnormalities. I was just one of many healthy(ish) volunteers recruited to provide data to be compared against patients whose heart function had gone awry.
I don’t know at what stage the trial is at currently and I don’t know when or where the investigators will choose to publish their results, but I hope that they choose to publish them openly.
Healthy volunteers take part in clinical trials for many reasons. Out of curiosity, sometimes out of benevolence, often because of financial incentives. Regardless of their motivations, it seems likely that at least some of each would be sufficiently curious to see the full results and know that their contribution was of use. You could argue that the researchers are free to do with my data what they wish and you’d be right – they are. But wouldn’t it be great if everyone that took part could also read it?
The same could be said of all research involving human participants. Someone, somewhere has advanced science infinitesimally by volunteering their time– and whatever bodily function they agreed to use– to investigate a problem. A problem which at some point will ultimately go on to improve the life of someone else, however tangentially.
So here are two arms of a study: healthy volunteers, who can say “I was involved in this, I helped to move forward the science”; and patients, who can say “I was involved in this, this science is moving forward to help me”. I’m sure both parties would wish for the world to share in this.
You may already be aware, but this week is Open Access week. Throughout the week we’ve been asking you to send in your examples of how open access has had a real and positive effect, and we’ve been highlighting articles demonstrating this. We urge you to continue sending us your examples on Twitter, or any other means.
We believe that better access to research makes for better science, and it’s really important that everyone gets to see just how much of a difference this can make, downstream of the primary literature.
On Monday, BMC Medicine hosted a Twitter chat around the theme of global health, which touched on a slightly different dimension to the benefits of open access – providing access to research in resource-limited settings. If you weren’t able to make it on the day, take a browse through our summary of the discussion over on the BioMed Central Blog, and read the Forum article around which it was based.
If there’s a good example of how open science can benefit us all, it’s Jack Andraka. Jack recently won the prestigious Gordon E Moore award for developing a simple and inexpensive way for detecting proteins related to the onset of some cancers, and we were really pleased that he could join us briefly at the Tweetchat. Still only a teenager, he has demonstrated a precocious talent for science, and a fervent belief in doing it openly.
We highly recommend exploring his story further. Motivated to search for a better cancer-detection test following the death of a family friend, he found his search for information hindered at each stage by a lack of access to the primary literature. His is an extraordinary story of tenacity and will, and a lesson in what can be achieved when these traits are coupled with the resources to fulfill their potential.
You are citizens, you are scientists
Jack is the next generation of informed citizens working in a digital age where the open flow of information is transforming the way people communicate, participate in, and do science. As well as voluntary participants in clinical research, you and I are now able to play an active role in research, through crowdsourcing, through gathering data on a scale unimaginable just a few years ago.
Citizen science projects now abound to suit the tastes of any aspiring lay-scientist, with projects ranging from bird-watching to sequence alignment. You can check out a few of the projects BioMed Central staff have been getting to grips with recently, over on our blog. Spare a thought too for one of our in-house Editors, Tom Rowles, who bravely played some videogames in the name of science.
We’re hopeful that in time, science by the people will be translated into science for the people, to be shared by its participants and recipients alike.
It also means that the beneficiaries of science become more empowered. Patient groups can now look to the primary literature, gather evidence from the coal face, and become an army of fact-checkers and informed advocates. Yes, scientific discourse can be complicated, there can be an awful lot of it, and it can sometimes be difficult to comprehend. But these do not seem compelling reasons to restrict access to this information from groups whose future health will be influenced by it.
The recent AllTrials campaign is a lesson in openness, and one from which we can learn a lot. Much of the scientific literature still suffers from a bias in positive results, in the same way that unregistered trial data does. Biases are not good for science, and they’re not good for citizens. We’re fully supportive of measures to mitigate this information shortfall.
While it’s important to raise awareness of the wider benefits of open access, we’ll not be restricting our efforts to just one week a year. Do continue to keep an eye out for developments from us in the future, do keep sending in your examples of open access impact, and do keep being an engaged and open participant in science. We’ll continue to keep things open.
As for my heart, it’s also open. The image is available without restrictions.