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Could Opening Up the Doors to the World’s Medical Research Save Healthcare?

What if you had access to all of the medical research in the world? Or better yet, what if the physician treating your particularly complex or rare condition had access to the latest research? Or what if a public health organization in your community could access that research to inform policymakers of measures to advance public health?

“Wait,” you may think, “can’t they already access that research? Doesn’t the Internet make that possible?” While unfortunately the answer to the first question is “No,” fortunately the Internet can make such access possible. As it is today, most physicians and public health professionals have very limited access to health research, almost all of which is published online. Only about a quarter of the research published today ends up being available to those working outside of universities, where libraries subscribe to a good proportion of the research journals.

So, what are these health professionals missing? What difference to their work would access to research make? Cheryl Holzmeyer, Lauren Maggio, Laura Moorhead and I seek to answer these questions with a new National Science Foundation study for which we are currently recruiting physicians and staff of public health NGOs.

We seek to demonstrate the difference it makes to the daily work of these health professionals to have easy electronic access to all the biomedical and public health research – or at least that large proportion held by Stanford University Library – for a period of eleven months (with one month of limited access as a control). To assess the impact of this access, we provide participants with a special portal to the research literature and track when and what research is viewed, while following up with interviews on the use and value of this access.

Our two pilot studies leading up to this one indicated that a significant proportion of physicians are interested in consulting more of the research literature than they are currently able to do. We also found that, once given access in a trial run, physicians certainly didn’t check the research every day, but would do so on occasion, in bursts of interest and attention.

We are deeply curious about how these patterns of consulting peer-reviewed research operate over a longer period and among a larger sample of both physicians and public health professionals. Will they examine bodies of work on topics of interest? Will they be encouraged by what they find to return and look for more? Or, will they be put off by the sheer quantity and technical detail of the work? Will they even find time to look?

We believe that people generally have a right to this knowledge, especially as it is produced with public funding in many ways. Yet we also think it important to establish with greater rigor and detail the contribution that such access can make to the work of health professionals. Such evidence would be valuable, indeed, for guiding current and future policy initiatives to provide public access to federally funded research.

In 2008, the U.S. National Institutes of Health (NIH) adopted a Public Access Policy that requires by law that all research that receives NIH funding be made freely available through PubMed Central within one year of initial peer-reviewed publication. That policy is currently being extended to other federal agencies that grant research funding, including agencies devoted to education, energy, the environment and other issues. Such research access initiatives have also faced resistance from private publishing interests, who see this as a potential threat to existing business models. In the case of the NIH policy, publisher resistance led to the one year delay between initial research publication and online public access. Clearly more evidence on the public value of such access would be helpful, including evidence on what is lost due to delayed access.

This study seeks to understand if and how access to health research can improve the clinical care provided by physicians and advance the efforts of those who work in public health organizations. If you are a physician or work for an NGO doing public health work, and are interested in exploring these questions with us, feel free to contact me at: john.willinsky@stanford.edu.

John Willinsky is the Khosla Family Professor of education at Stanford University, and long-time educator and advocate of open access education. He retains a partial appointment at the University of British Columbia in his native Canada, where he continues to direct the Public Knowledge Project.

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JenniferShirie Leng, MDPatrick Monk.RN.Diane Burnside MurdockAndrew Oram Recent comment authors
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Jennifer
Guest

Definitely medical research derives the importance of health care system among us. Therefore we are able to get better and beneficial health care results through the help of medical research so finally we are estimating a better and quality health care through medical research.

Shirie Leng, MD
Guest

I have often been frustrated by the holes in on-line journal access. I find things on medline or other sites all the time that have links to “free full text” but when click on it you are transferred to a site that requires registration or other institute of higher learning access. I would caution, though, against giving everybody free access to all research all the time. The vast majority of people, including many physicians, don’t have the statistical skills to interpret what they are reading in a way that makes practical sense.

Patrick Monk.RN.
Guest
Patrick Monk.RN.

One no-brainer might be to look at all the studies that have already been done in other countries into the potential medicinal benefits of marijuana, and at least consider funding some objective research of our own, preferably not funded by the Pharmaceutical Industry and NIDA. Just my 2c.
Patrick Monk.RN. Hospice Case Manager. SF. Ca. USA.

Andrew Oram
Guest

Thanks for a passionate and informed view of the open access movement
in medical research. Open publication creates a flood of relatively
unstructured information, which we have not learned to funnel down to
useful insights for doctors (IBM’s Watson is one famous attempt that
may work). As I point out in an article on this site
( https://thehealthcareblog.com/blog/2013/04/26/open-research-for-open-cures-a-report-from-sage-congress/
), releasing the raw data from research would also stimulate a lot of
progress, although provenance nad organization of data are major
challenges.

Diane Burnside Murdock
Guest

Andrew, great article and your comments are right on. I think it’s important to ask physicians to access research but what’s just as important is what’s happening with online social networking. Many of my friends dealing with serious illness are avid online readers pouring through research literature and searching and finding others out there who like themselves are dealing with the same complex conditions. They are listening to their doctors but are also listening to others. It’s amazing because they are empowering themselves to make decisions they feel are good for them especially if the chances of recovery are poor.… Read more »