Here is a slightly different approach to defining 'health information'
which comes from an analysis of learning organizations (where in the
limit the 'organization' can be an individual, or a family).
Rather than identifying it in terms of objective characteristics (an
endless task of taxonomy when pushed to the wall) or in the operational
vague terms of "any information that is (useful)", this approach focuses
on the potential sources of information. In my own work we call it
"4-Way Accountability and the Obligation to Inform".
It starts from where one should start when information is important, and
that is the terms under which it is provided, rather than just the ways
in which it is sought. It also assumes that the posessor of information
will not always know what is useful for what, so that efforts at
purposful 'packaging' can be only part of the solution for the difusion
of appropriate information.
It allows for a variety of forms of information intermediation,
ranginging from individual searches to infoSherpas/infoPortage (agents
moving information from here to there based on their
ascribed/self-selected mission) and through to formal learning
curriculum. It assumes a regime of 'distributed learning' (distributed
across time, space and venues/media)) in which learning is assumed to
be a normal state of affairs.
This had implications for health education in that it is more than just
palliative and preventative. It must be more that "eat chicken soup and
rest" when you have a cold, or being told that "unprotected sex with
multiple partners is risky". It is about more than what to do about what
you have or how to protect against might happen to you.
It is about an attitude (institutional and personal, at work and at
home) with regard to information. It is also addresses the issue of
verified health information by reversing part of the process whereby
information is authenticated.
The prevailing regime is one of bottling up most information and only
releasing that which has been "screened" by peer review or by screening
agencies. The result (especially in an age of HIV/AIDS and an aging
population) has been the dramatic growth of 'other health information'.
By now even the (U.S.) National Cancer Institute routinely reports on
street treatments for AIDS and Cancer, and alternative medicine is a
growing field.
As a complement to this regime there is a growth in strategies which
look for the 'knowledge and wisdom' in the information at hand. This is
not simple and we are not there yet. The challenges are two fold. First,
how to identify the 'wisdom' in the non-peer reviewed knowledge. The
second is how to situate the relevance of peer reviewed knowledge in a
specific social/family/individual setting. Expert knowledge is only
appropriate in the right context. It is not appropriate simply be virtue
of being expert knowledge.
This relates to the provision of the raw materials for health
information (and the intermediary activity of health promotion) in the
following way. In its simplist forms accountability has long been taken
to mean accountability "UP" to those higher up in the organizational
structure, and an accountability with respect to actions in light of the
organizational mission. In more recent times accountability has been
expended to mean accountability "DOWN" to those stateholders who are the
intended beneficiaries of the process.
In both cases this accountability has been with regard to activities and
not necessarily with regard to the information residing with the agent
or agency at that particular level in the process.
There are two extensions of this accountability that are worth
entertaining. One is based on a broader definition of stakeholder. If
one defines stakeholder as anyone (any org.) "OUT THERE" at risk of gain
or loss as a result of the activities in question, then one gets a third
(ill-defined) group to which an intermediary agent or process can be
accountable. We return to the ill-defined nature of this group shortly -
it is linked to information. The fourth group is "IN HERE", and based on
the growing recognition that within organizations the right hand seldom
knows what the left hand is doing and - more the point here- the right
hand seldom knows what the left hand knows.
This introduces a new wrinkle in the notion of accountability. It is the
notion of accountability in four directions (UP, DOWN, OUT, IN). In
terms of activities this points to the rich area of 'community
participation' This may be linked to 'empowerment' but that need not
follow. It may result in increased social control.
[[>NOTE: Henry Veltmeyer from St. Mary's University, Halifax, has a
paper "Decentralisation as the Institutional Basis for Community-Based
Participatory Development: The Latin American Experience", Canadian
Journal of Development Studies, v. 18, no. 2, 1977, in which he argues
that the result has been the demise of organizations which might
challenge the power structure of national institutions and policies for
more effective change. This point is not lost on the Harris Government
in Ontario, in its push for volunterism on all fronts.<]]
In terms of access to knowledge (i.e., health information) this points
to an "obligation to inform" on the part of each participant in the
process. Rather than look at a process which produces a small flow of
validated knowledge, it looks at a process in which each participant is
asked "What information do you control and what subset must remain
private?" For the rest, you are obliged to 'report out' since it may be
of use to others. Of course, 'reporting out' requires an approprate
venue, both for the reporting of information and for access to that
information.
Reporting out could not have been considered a viable option in the
absence of the rapid growth and merger of information and communication
technologies (ICT), since reporting out could be consider too expensive
and too much work. With the growth of ICT the average 'agent' is quickly
being confronted with three electronic venues: (1) the Public INTERNET
for OUT/DOWN; (2) the private INTRANET/LAN for IN/UP, and (3) the
EXTRANET for DOWN/OUT to targeted stakeholders.
The growth area for accountability then becomes the 4-way obligation to
inform and to do so using the electronic venue - since that supports
access (as well as the 'push' delivery of information). Combine this
with a 'print to digital first' information management strategy it
becomes relatively burdenless. The main challenges remain as (a) the
political will and high level support for such an information regime,
and (b) a organized approach (plan) to get from _here_ to _there_ in
terms of becoming a learning organization.
In the process this changes significantly the game of providing health
information, how validation is combined with local knowledge and wisdom,
and the skills required for health promotion. Health information becomes
less a commodity and more part of the renewable fabric of a social
process. Health promotion becomes less the selective movement of bits of
information, or strategic interventions by health promoters, and more a
concern with the way knowledge about health is woven into the social
fabric of society and the individual fabric of one's life.
The electronic venue as an ICT-enabled workspace and social process
venue is both an opportunity and a challenge, and not without risk.
The venue is there The next moves are up to the players, agents and
stakeholders in the health information and health promotion sectors.
Sam Lanfranco <[log in to unmask]> Distributed Knowledge Project
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