On the benefits of Open Access to medical research about rare diseases

May 6th, 2009 • General
Tags: Fente Sternale, Medical Research, Open Access, Sternal Cleft

Yesterday, Peter Suber wrote  in the Open Access blog: ‘OA to medical research helps patient families, not just professionals. It’s impossible to argue that OA to peer-reviewed research doesn’t help lay readers’.

I’ve never taken part in the debate about Open Access to scientific knowledge. But I believe that OA is a right for all citizens worldwide. Naturally, the benefits of OA for scientists, scholars, teachers and students are irrefutable. However, there is an ongoing polemic about the benefits of OA for the ‘curious minds’, the general public, just the lay readers. See OA news on OA for lay readers.

In my opinion, access to scientific knowledge is not only a matter of access to peer-reviewed articles in a online research journal. As an educator, I see, among many issues, some related the vulgarisation of scientific knowledge by the researchers themselves. I just think about blogging about research findings or even introducing a section, sort of summary, that completes the abstract of all research articles and that targets the general public so it can be easily and widespread reproduced. Also, from the lay readers’ side, the required literacy for OA: use of centralised OA research engines, selection and classification of sources, use of references… Naturally, the ability to understand  abtracts, (discussions) and conclusions will vary among individuals and depends on each individual’s education.

Many has been said about the reasons for lay readers to access scientific knowledge. I want here to give my personal reasons. Open Access to medical research about rare diseases is a fundamental right for all citizens worldwide. It is outrageous that still in 2009, patients and patients’ families, and specially those who suffer from a rare disease cannot access all medical research online and for free.

In my case, I will not understand it all. I will not become suddenly, by reading a research article, an expert of the area and solve my daughter’s problem, transforms myself in a doctor or a surgeon, but by accessing OA medical research I certainly can:

• Identify national and international experts, including research units, laboratories and health care centres that I can contact,
• Have a rough idea of the state of the art, including:
  • the range of materials, methods of interventions and treatments, including recommended operative techniques,
  • the innovations in the field,
  • better understanding of the results and complications, including mortality rate and psychological effects,
• Increased awareness of reputation and expertise of doctors I may contact, but also a better assessment of the treatments suggested by the doctors I’m in contact with.

While writing this, three provocative thoughts come to my mind:

• Can lay readers assess quality?
• Do doctors want patients to be informed?
• By giving to lay readers, in these case patients and theirs families, OA to medical research are we changing traditional power structures related ownership of knowledge and shifting locus of control from doctors to patients?

I feel in the mood to go further and say that even commercial academic publishers should guarantee OA to medical research for patient and families with a disease, rare or not. It is vital for us and it is also a public good.

I finish by quoting the first paragraph of the Budapest Open Access Initiative

An old tradition and a new technology have converged to make possible an unprecedented public good. The old tradition is the willingness of scientists and scholars to publish the fruits of their research in scholarly journals without payment, for the sake of inquiry and knowledge. The new technology is the internet. The public good they make possible is the world-wide electronic distribution of the peer-reviewed journal literature and completely free and unrestricted access to it by all scientists, scholars, teachers, students, and other curious minds. Removing access barriers to this literature will accelerate research, enrich education, share the learning of the rich with the poor and the poor with the rich, make this literature as useful as it can be, and lay the foundation for uniting humanity in a common intellectual conversation and quest for knowledge.