Tuesday, February 28, 2006

Open Access to Medical Literature

Ray Corrigan on bfxxx blog has posted a very rough draft of a book chapter on open access and the medical literature, and is asking for comments - here are mine.

In brief, there are a number of reasons why open access to the medical literature is important for the public. Although most of us will not wish to read the research literature for every acute or minor illness or emergency, some of us will be motivated to learn more when dealing with chronic and serious illnesses, particularly ones that are difficult to treat. At first, not everyone will understand the medical literature; however, it is our right to try to do so. This is part of our fundamental rights to freedom to read. And, given the option, some people will learn how to understand medical research. Back in our history when only the clergy had access to reading material, few people learned how to read. Readily accessible reading material was necessary for public literacy and education. Even without glancing at a single article, however, the public benefits greatly from open access to the medical literature, because it means more knowledge in the hands of those who serve us: medical professionals, educators of medical professionals, politicians and public servants, and journalists.


One of the reasons for open access to the medical literature is to allow people to actively participate in understanding and assessing the treatment options for treatments they themselves, or their families, suffer from.

One of the issues Ray brings up:
...could justifiably claim that most lay people are insufficiently well trained to understand even the language of medics or the reliability of the sources, especially on the Internet...

Several points here:
1. People are using the Internet anyways. Open access to quality information just means the odds are a great deal better that they will find accurate information.
2. One of our most essential of freedoms is intellectual freedom, and the freedom to choose what we read is an important element of intellectual freedom. This applies not only to what we choose to read; it applies to the level, too. If I choose to read material I do not understand, that is my choice. There are people who have started learning about medical research, and did not understand the articles at first, but found they needed to do some reading in medical textbooks in order to understand. Sharon Terry, an open access advocate who learned about a rare medical condition in order to help her children, went from looking at information she did not understand, to reading medical textbooks, to eventually becoming a co-researcher and helping to write the medical research articles - helping her own children along the way.
3. There was a point in our history when reading itself was considered beyond the ability of the public, something best left to the clergy who would interpret and present the public with the information they thought the public should have. Until people were able to access reading material, they did not learn how to read. Until recently, members of the public did not have ready access to the research literature. When Medline first became public in the 90's, I understand that usage increased 100 fold (that is, one hundred uses where before there would have been one), astounding the NIH which produces Medline, as the usage exceeded the population of physicians, who were presumed to be the only likely readers for this indexing service.

Ray makes the point that we are probably not going to review the medical literature in the event of an emergency. Generally speaking, I would concur, and would add for any acute illness, whether emergency or not. However, there are times when I can see a family or patient dealing with an emergency and less than optimum medical staff availability helping out by reviewing the medical literature.

We are much more likely to read the medical literature if we or a family member has a chronic illness, as Ray points out. To me, this seems particularly likely when the illness is not easy to diagnose or treat, there is ongoing research and hope for a potentially better treatment outcome, and/or the illness is genetic in origin, and thus likely to afflict more than one family member.

Another point I would suggest adding:

The public benefits from open access to the medical literature, even if they do not read it themselves at all!

Open access to the medical literature means more access not only for patients and families, resulting in direct benefits, but it also means more access for other groups as well, which also benefits the public.


The medical professionals - doctors, nurses, and allied health care professionals - who serve us have better tools to help us with open access. With open access, the rural doctor or the urban physician working from a private practice office has the same access as the physician working in the research/teaching hospital. Even in an emergency or in a situation where the patient prefers not to read the research literature, the patient still benefits because those who care for us have the best possible access to knowledge.

Educators have more access to the medical literature. It is easier to set up programs to teach medical professionals, and teach them well. We all rely on these professionals at different points in our lives; having enough skilled professionals makes a huge difference in our ability to receive the care we need.

Politicians and public servants: our policy-makers have more knowledge on which to base sound decisions.

Journalists have more access with open access. This makes it possible for them to interpret the research for those who prefer not to read it directly. Journalists can help us with health matters by alerting us to possibilities for prevention, early diagnosis allowing for early treatment, and new research which brings up the potential for a new treatment.

For more of my work (with Andrew Waller) on this topic, see: Open Access: Basics and Benefits, or Open Access: An Introduction.

Thanks to Peter Suber on Open Access News for the alert to Ray's book chapter.

This post reflects my personal opinion only and does not represent the opinions or policy of the BC Electronic Library Network or the Simon Fraser University Library.

Tuesday, February 21, 2006

Peer Review, Research Funders, and - When?

Here is one research funder's perspective I have heard on peer review: yes, of course the funders want the results of the research they fund to be peer reviewed. It is an important means of ensuring, not only quality, but also accountability for the monies spent.

However, the work that goes into the peer review of the final article may be nothing compared to the careful scrutiny by many eyes that goes into the grant proposal!

When we study peer review - of the final article - are we studying the wrong end of the process?

With or without funding, does it not make sense to carefully examine the research question, the background reading, the research method - even before starting the research?

Wouldn't this be a more effective, and cost-effective, means of approaching research, rather than waiting for the mistakes to be made, and then critiquing?

This post reflects my personal opinion only and does not represent the opinions or policy of the BC Electronic Library Network or the Simon Fraser University Library.

Peer Review: Not for the Peers?

Here is an interesting idea: is peer review not so much for the peers?

The scholars who are capable of peer reviewing a given article may not need this service; they can judge for themselves.

It is the rest of us - the general public, professionals, students, the researchers when searching outside their research specialties, who need the peer review to be assured of the quality of an article.

Peer review may be a good service to the peers, too - then they can focus more on reading, and less on critical evaluation.

With thanks to the inspiration of a (so far) anonymous friend.

This post reflects my personal opinion only and does not represent the opinions or policy of the BC Electronic Library Network or the Simon Fraser University Library.

Saturday, February 18, 2006

Peer Review & Replication: A Tale of Two Experiments

The focus of the open access movement is the peer-reviewed scholarly paper. Peer review is an important tradition in science, a way of assuring quality in a published paper through careful review and critique by the researchers peers. However, it is not the only means of ensuring quality in science, nor necessarily even the most important one!

Another way scientists assure that we are on the right track is through challenging our assumptions. This should include the assumption that peer review is truly necessary and desirable, right? It's only scientific!

Consider these two hypothetical experiments:

Experiment A: passes peer review, but cannot be replicated
The research is completed and the results written up for publication. The paper passes peer review with flying colours, and is published. However, a number of researchers attempt to replicate the results - without success!

Experiment B: replications with no peer review
The researcher posts methods and results on the world wide web. The experiment captures the imaginations of researchers around the world, and the experiment is replicated and the same results retrieved, over and over again. The researcher does not feel a need to publish in a peer-reviewed journal for career reasons; being more interested in research per se, the researcher just goes on with more experiments (posted on the web again) and never bothers with peer review at all.

The point I think I have made here is that in science, replicability of a study is a far better means of assessing the accuracy of research results than peer review. In an open source science environment, many experiments could be replicated in less than the average time it takes to publish a peer-reviewed paper. Indeed, if the experiment involves fairly simple equipment and techniques, why not have students involved in doing the replications?

In the electronic environment, it should be possible to develop means of tracking replications of a given experiment.

This does not necessarily mean that peer review would not be necessary and desirable; but perhaps it is not necessary for every piece of research.

Thanks to Drexel University's Jean-Claude Bradley and his Blogger Lab Notebook for the inspiration!

This post reflects my personal opinion only and does not represent the opinions or policy of the BC Electronic Library Network or the Simon Fraser University Library.

Friday, February 10, 2006

Toward a vision for scholarship...and communications

The combination of the electronic medium and the world wide opens up a world of possibilities - open access to the scholarly literature being only one.

Scholars around the world and across disciplines can work together on their research using electronic means. It is now possible to publish, not only an article summarizing the results of a research project, but a very great deal more.

A research project may arise from electronic discussions on listservs, blogs, wikis, or other collaborative communications tools. Robots could be employed in the research process. Drafts of a research proposal can be posted to the web, as well as proposals submitted to funding agencies.

A research team could maintain a web site or wiki to keep people up to speed on what is happening with their research; this might be the most effective way for team members to communicate with each other, too. This web site could include links to key background information, cvs or pictures of the research team.

Data can be posted to a repository as soon as it becomes available. Other researchers, perhaps students too, might be able to make use of the data for a totally different research project.

Depending on the nature of the research, it might make sense to supplement data with pictures or movies.

A means for people to comment on research in progress could be supplied, if desired. This could be open to anyone, or on invitation only.

It is not unusual anymore for preprints to be posted to repositories. Experiments with open peer review (comments posted publicly) are underway; this will make it possible to conduct research on the peer review process per se.

Students around the world can have ready access to the research literature, making it easier to teach research methodology. Students at many levels could be doing original research - and publishing it!

It is important to distinguish the works of professional researchers from that of students, of course. It is also important to distinguish work that is peer-reviewed from that which is not. These are not the same, however!

Peer review need not be limited to the professional academic. One of the more interesting projects, to me, emerging from John Willinsky's Public Knowledge Project at UBC is a group of grade 8/9 girls who are publishing their own open access, peer reviewed journal, with the assistance of Sarah Twomey, a PhD student working with John Willinsky. What a fine idea! What could be better than high school grads with the skills and maturity to seek and accept help expressing their ideas?

An open access item can be a peer-reviewed postprint - a static item developed for the print world. Or, it could be a periodically updated article, like the articles in the Stanford Encyclopedia of Philosophy.

Open access to the scholarly literature is not the same as open accessibility of textbooks, news sources, digital collections, or government information. But, there are parallels, and plenty of overlap.

As many an open access advocate has - correctly - pointed out, it is important not to confuse the wide variety of challenges and issues that come from the shift from paper to electronic, from postal distribution to the world wide web, with the issues and challenges that arise from open access to the scholarly literature per se.

However, in my opinion, it is also very important not to be so focused on open access to the peer-reviewed postprint so as to miss out on the tremendous potential of these media.

It is through open sharing of information and working collaboratively rather than competitively that the human genome was mapped in an amazingly short time.

We could take this approach to other important research questions - like how to find economical, renewable, environmentally friendly sources of energy; or, a renewed focus on the humanities and social sciences research that could lead to the answers to the question of how we can live together in peace in this global village of a modern world.

Until we grasp this full potential, open access to the peer-reviewed postprint might look to some like a little piece of a puzzle. The moment you shift to this bigger picture, the puzzle piece falls into place. The beauty and necessity of open access - and the sheer folly of pursuing any other model - is immediately obvious.

This post reflects my personal opinion only and does not represent the opinions or policy of the BC Electronic Library Network or the Simon Fraser University Library.

Thursday, February 09, 2006

Blogger Lab Notebook

From Jean Claude Bradley - addition to Towards a Vision for Scholarship...and Communication:

I really liked the ideas you were bringing up about using the internet to do collaborative open source science and I thought you might be interested in our recent use of Blogger as a lab notebook to share not only the results of experiments that work but also the majority that don't.
More here:
Blogger Lab Notebook

This post reflects my personal opinion only and does not represent the opinions or policy of the BC Electronic Library Network or the Simon Fraser University Library.

Saturday, February 04, 2006

Best blog title so far!

According to the Swedish blog Mudtimod.dk - Mens vi venter - The Imaginary Journal of Poetic Economics is the Bedste blog-titel so far (best blog title so far).

Many thanks to Peter Suber for the link!

This post reflects my personal opinion only and does not represent the opinions or policy of the BC Electronic Library Network or the Simon Fraser University Library.