Someone posed a question on the IRB Discussion forum wondering if there was a source of free materials "that we can email or distribute as hardcopy to our study coordinators and other research staff to help them keep up to date on issues relevant to human subjects research."
There' a lot of good stuff on the web, I wrote back, but you have to live with uneven quality, partisan viewpoints, and there is no one to collate and synthesize the results. But then I thought that maybe I could do this. So as I have time, I'll highlight some of the interesting developments and controversies in research and provide links to free sources of information on the web. Here are some examples of sources that I will draw on.
- STATS (www.stats.org). This page is published by the Statistical Assessment Service. I'm worried that they will come after me because I use the same acronym STATS that they do, but as far as I know you cannot copyright an acronym. If they complain, I'll change my web page to "A fair and balanced look at Statistics." The STATS web site "monitors the media to expose the abuse of science and statistics before people are misled and public policy is distorted" and they do a pretty good job. Sometimes they come across as partisan to me, but that may reflect my biases rather than theirs. As an example of an interesting recent article, see their December 15, 2003 discussion about hormone replacement therapy and the perils of observational research. My favorite take on this controversy, by the way, was an editorial by David Sackett titled "The arrogance of preventive medicine." I hope to write a web page about this controversy myself when I have time.
- Junkscience (www.junkscience.com). This page, published by Steve Milloy, is definitely partisan. He scoffs at the purported risks from global warming, environmental tobacco smoke, mad cow disease, and so forth. But he knows his statistics and is good at uncovering methodological weaknesses in various medical and environmental research. I believe he lapses into statistical nihilism, where any flaw in the methodology is enough to toss out the results. Steve Milloy also writes a regular column for the Fox News web site, and you might find a January 30, 2004 article about the controversy over carbohydrates in diet to be interesting.
- AHRP (www.ahrp.org). The Alliance for Human Research Protection sends out regular press releases about research abuses and provides testimony to government agencies in favor of greater research protections. Since AHRP is an advocacy group, you won't find too many articles that are complimentary of research methodology and I disagree sharply with their criticisms about research with children. Perhaps I am conflicted, though, because my salary is paid for by a hospital that does research with children. A December 7, 2003 press release on conflict of interest highlights problems at the National Institute of Health. Conflict of interest is such an important area for those of us who perform research, but also for those who have to interpret research where the journal authors have a conflict.
- BioMed Central (www.biomedcentral.com). BioMed Central publishes a large number of open access journals with the full text available on the web. My favorite journal is BMC Medical Research Methodology. Some of these articles are a bit technical, but there are also some real gems, such as a December 22, 2003 article on pragmatic trials.
- BMJ (bmj.bmjjournals.com). One of the pioneering journals in open access has been the British Medical Journal. They will limit access to articles starting January 2005, though, but they would still have a wonderful archive going back to the mid 1990's and they would still re-open access to published articles six months after the publication date. BMJ has always done a nice job of highlighting research methodology and their collected resources page is a nice place to explore, with sections on Epidemiology, Ethics, Statistics. A good example of research methodology is a January 31, 2004 article on improving self report measures.
- Bandolier (www.jr2.ox.ac.uk/bandolier/). There are many resources for Evidence Based Medicine (EBM), but Bandolier is my favorite. The writing is crisp and clean and they have wonderful real world examples. The November 12, 2003 issue has an article about the value of searching skills in EBM. While you might think that training people how to find the evidence would lead to better outcomes, the evidence is actually mixed.
There are many more resources, of course. Send me an email if you have a favorite.
An additional educational resource
Someone else on the IRB Forum listed a nice educational resource from Illuminata. This web site lists recent news stories about research controversies, such as a February 1, 2004 report about a lawsuit from the families of five patients who died in a controversial medical experiment. The web site describes Illuminata as "a Seattle-based education and information services company, providing services and resources in the areas of human subjects research, ethics, and genetics. We support IRB professionals, research teams and others through identifying their information and education requirements and developing tailored products and services to meet their needs."
You can find an earlier version of this page on my original website.