On April 15, 2010, the Federal Research Public Access Act (HR 5037), known by its acronym (FRPAA), was introduced into the U.S. House of Representatives by Michael Dole (D-PA) and five co-sponsors.  It’s the same bill (S 1373) that was introduced last summer into the U.S. Senate by Senators Lieberman and Cornyn.

In its essence, FRPAA would extend the NIH Public Access Policy to all federal agencies that spend more than US$100 million in extramural research.  Like the NIH policy, FRPAA would require deposit of the author’s final manuscript.  Interestingly, it does ask for the final published version if “the publisher consents to the replacement.”

The rationale for this bill is based upon the connection between the free dissemination of scientific results and the advancement of science and the public good:

the Federal Government funds basic and applied research with the expectation that new ideas and discoveries that result from the research, if shared and effectively disseminated, will advance science and improve the lives and welfare of people of the United States and around the world

While much is known about how researchers make use of the scientific literature, much less is known about the consumption of scientific literature by the general public.  Other than anecdotal descriptions — say, of patients bringing medical literature they found online into the doctor’s office — little is known about how the lay public uses the primary literature (e.g., scholarly journal articles) compared to public-focused websites, blogs, and discussion lists.

What is known is that Americans are going online seeking health information.

Periodic telephone surveys of American adults conducted by the Pew Research Center for their Internet & American Life Project reveal that the percentage of adults who look for health information online has increased between 2002 and 2008.  In their 2006 survey, 80% of American Internet users have searched for information on at least one health topic. For those living with a disability or chronic disease, the percentage was even higher (about 86%).  This group was more likely to report that online searching affected their treatment decisions and interactions with doctors.  Respondents who had experienced a health crisis in the past year were also more likely to get a second opinion or ask their doctor new questions based on their research.  Not surprisingly, individuals with home broadband access were more than twice as likely to conduct online health research than dial-up users.

According to these Pew telephone surveys, most Internet users begin their research with a general search engine such as Google when seeking information on a health topic: few report beginning their inquiry at a health-related website.  These results are confirmed by naturalistic observational studies of how laypersons search for online health information in an experimental setting. [1][2][3]

The Pew telephone surveys list many sources of medical information including websites, blogs, commentary, and podcasts, but does not indicate whether the sources were scholarly or professional in nature and makes no specific mention of journals or scientific articles as a source of medical information.

Likewise, the Health Information National Trends Survey (HINTS), supported and maintained by the National Cancer Institute, asks several questions about the source of health information, but confuses sources, media format, and location.

For example, one question [HC02] asks “The most recent time you looked for information about heath or medical topics, where did you go first?” and reports, among others: Internet (61.0%); Doctor or health care provider (13.9%); Books (8.4%); Brochures, pamphlets, etc. (3.8%); and Magazines (3.4%).  Based on how this question is phrased, it’s difficult to discern what the researcher is implying – or indeed what the survey respondent is thinking – when asked about Internet use. Magazines, books, brochures, and health care providers can be accessed via the Internet.

Most medical and health-related web pages suffer from significant problems dealing with accuracy, bias, and completeness. While laypersons claim that they use a number of criteria in evaluating the credibility of a medical website, in practice, few of them check the credentials of the source and are unable to later recall the sources of their information.  Indeed,  just 15% of telephone survey respondents claimed that they “always” check the source and date of the information, and 10% claimed they did “most of the time”.

If consumer web sites are the source of most health information, there is little that FRPAA will do to improve the transmission of research to the public.  If anything, these websites will start including links to author manuscripts.  But since few of these health sites currently cite the published literature (much of it already free), don’t count on it.