When open access to research becomes personal

Why is getting high quality medical information still so hard?

I’m not the first to come up with a personal story about the importance of open access and I’m not going to tell my story right now. I want to tell two other stories from the past couple of weeks that have reinforced for me why I do what I do every day in advocating for full and immediate open access to research.

I have two friends, not massively close, but close enough for them to tell me that each of their children has been diagnosed with a rare cancer in the past year. Neither work in a university so their access to information is pretty limited. Like everyone who hears about this my first resort is Google. For a lot of folk the next step is Wikipedia and it was for me — as despite being medically trained I’m not familiar with these particular cancers. I then headed to PubMed and then to trial registries. These last two sources are places that most non-medically trained people don’t go — but even if they did they would have been massively disappointed with what they could find.

What did I find when I was looking for high-quality, up to date information? First off, that there isn’t much on either of these particular cancers. What there is, is mostly in fairly obscure journals, but some other papers are in much better known journals; overwhelmingly, however, the research required a subscription to read. Cost to read of just the first few articles came to well over AUD $100. And because I do use unpaywall to see if there were OA copies (there weren’t) there are no other easy or legal options for these parents. For those who’d like to say that subscription articles are usually freely available in 6–12 months, I’ll just point out that for one of these cancers the median survival is around 5 months. Oh, and there are trials for these cancers, duly registered but not reported.

I’m not going to go over again here all the intricacies of open access policies and how hard it apparently is to convert society journals from subscription to OA without them losing their ability to function or how we shoudn’t disrupt the apparently fragile ecosystem of a multi-billion dollar profitable business model for the sake of it — because, to be honest, I’m really bored with these arguments. Could we not possibly agree that we don’t have a well functioning system when parents can’t access new research (which they will have to some extent funded through their taxes) at the time they need, so they can get the information to help them decide in a timely fashion what, if any, the up to date treatment options for their children are.

When I have to explain to friends like this who need to access information how the system currently works — or rather, doesn’t work — it makes me deeply ashamed we have not managed to change it yet. We need to get our priorities in order.