Re: Health Information Needs

[heatherm@eln.bc.ca]

Tony, it sounds like we're completely in agreement on the need for good
consumer health information (ideally open access - this is another area
where the U.S.'s NIH is a role model), as well as the role that librarians
can play in helping people to access the right information at the right
time.

Not every patient will want to read the research literature, for every
illness.  Even those who eventually do make the decision to go this route,
might well wish to begin with reading consumer health information first.  
Reading the research literature is likely to be attractive mainly to those
who have chronic or long-term illnesses, which medical treatments
available to them cannot completely address.

I cannot stress enough, however, that it is a key principle of
intellectual freedom that the choice of what kind of literature to read -
the one-page pamphlet to the consumer health book to the research
literature - belongs to the reader, and only the reader.

Direct reading of the research literature is only one of the reasons why
open access to the medical literature is in the public interest, however.  
Even when patients do not choose to go this route, it is obviously
important that those who do provide their treatment - doctors, nurses, and
other allied health professionals - do have full access, throughout their
training, whether they study at the wealthiest or poorest of schools, as
well as throughout their practice, both to keep up their general
knowledge, and to look up information on specific problems to patients.

Another kind of mediation that is helpful to all of us, which is greatly
facilitated by open access, is that provided by many others, such as
journalists, politicans, civil servants, educators, and the writers of
consumer health literature.  The more and better access all of these
people have to the research literature, the higher the quality of mediated
consumer health information for all of us.

Peter Banks:  if some groups in society do not have equal ability to read
the research literature, it seems likely that lack of equal opportunity to
education and to the literature is a factor.  The solution is more access
to education, and to the literature, not barriers to the literature -
particularly not barriers for particular groups based on ethnic and/or
economic factors.

Hispanic peoples might be more able than many of us to make use of much of
the open access literature, since the Latin American peoples are very much
leaders in this area with the Scielo
http://www.scielo.org/index.php?lang=en project.  African American people
might be very interested in hearing about the African Journals Online
project, at http://www.ajol.info/.  For the most part, only the abstracts
are freely available online so far, although some journals such as the
Sahara Journal of Social Aspects of HIV / AIDS are completely free.  As
for the poor, it is my impression that the poorest of peoples are the
leaders in open access.  It is the profits of the richest countries that
is the biggest barrier to open access, in my opinion.

hope this helps,

Heather Morrison

On Sun, 31 Jul 2005 21:35:19 EDT liblicense-l@lists.yale.edu wrote:
> My main point is that for people outside the research community with a
> sudden and urgent need to acc.  It is the key factor in connecting them
> with relevant, quality information in a form they can assimilate at a time
> when they may be under severe emotional stress.  Mediation by a
> professional librarian, face to face or via patient-oriented web sites, is
> by far their best chance of being connected to the right research whatever
> publishing model is in place.  And I'm not primarily thinking of, say, the
> physics prof who gets unwelcome news at an annual health check, but of
> regular people who've never needed to understand the distinction between
> textbooks and bound research journals.  It's why libraries and librarians
> are important.
> 
> Tony McSean
> Director of Library Relations
> Elsevier