Community Informatics for Improving Health
Michael Gurstein
I've been wanting an issue of JoCI on this topic for some
time. My thought is that there is a potentially natural
and powerful fit between Community Informatics and
health.
Maintaining and improving the health of its members is
one of the most important functions that a community must
fulfil. As well, we know that the cost of health care is
in many parts of the world becoming a huge and even
unsupportable burden because of the directions in which
health care has been evolving. Finally, we know that
there is a strong and positive relationship between
health and one's involvement in social relationships,
including those of family, friends and community. Thus
exploring how Information and Communications Technologies
might enable health and health services by, through and
within communities would seem to be a natural focus for
Community Informatics.
Interestingly enough, developing this issue using a
community and ICT lens to look at issues of health and
health services proved to be rather more difficult than I
expected. Many, even most, of the papers we initially
received did focus on ICTs and health service delivery,
even health service delivery to the grassroots, but they
reported almost exclusively on the ICTs and the ICT
components of the service while ignoring any contribution
that was or could be made in those services by or within
the community.
Thus, there would appear to be large numbers of studies
on telemedicine and telehealth in general but
surprisingly, even astonishingly, few that recognize or
incorporate how communities might be a necessary
component in how these services are being or could be
delivered in marginalized communities. Even where it is
evident, an extensive infrastructure of local health
support is not likely to be available; here, less formal
structures of mutual aid and support through networks are
often a means for providing services where such services
are either unavailable or overly costly for individual
residents. Equally, research which examines how ICTs can
be used to support community processes which in turn
support social inclusion and health and well-being, only
appear in a few contributions to this special issue.
Perhaps not surprising, one interesting counter example
of the above is the range of studies from various parts
of the world specifically dealing with remote, rural and
indigenous communities. In these instances, the case from
Papua New Guinea in the current issue and from several
parts of Canada in previous issues demonstrate once again
that necessity is the mother of invention and present a
number of highly innovative strategies incorporating ICTs
(including mobiles) into broad community-based strategies
for health maintenance and improvement.
The papers in this special issue tend to have a hardware
and methodological focus perhaps because the call for
papers going out to an audience unfamiliar with community
informatics identified that the operative term was the
more technological "informatics" rather than the
"community" element. The editorial team did, however, ask
authors to add this element to papers where it was
missing.
While to my mind the articles in this special issue fall
somewhat short of what I would consider a truly
"community informatics" approach to "improving health" my
hope is that we do raise some useful questions in this
area and make some useful alliances among those who
otherwise might not be aware of the opportunities that
linking communities, ICTs and health might present.
One further observation based both on the papers in this
special issue and on some as yet unreleased documents
concerning ICTs and Health from the OECD, is that the
model of health care being presented would appear
overwhelmingly to be focussed on the individual as the
health care "client" and of course, medicine is
overwhelmingly focussed on the individual as patient.
However, as we are coming to increasingly recognize in
all aspects of services in society, it is oftentimes of
equal or greater importance for well-being to recognize
that the well-being of the individual is to a very
considerable extent derived from their position in and
interactions with their families, their peer groups and
their larger communities. Removing individuals from
these, even conceptually, does considerable damage to the
reality of health and wellness.
Thus, including communities as a constituent element in
ICT-based health research, planning and service delivery
would appear to be a necessary addition in these areas
and including in the design and deployment of ICT
supports in these areas. Thus for example, designing
telemedicine programs which ensure that there are trained
resources at the patient end to support the service
delivery, and particularly the follow-up within the
community, would appear to be a necessary component of
any effective telemedicine program. Equally, ensuring
that the delivery of health information, as for example
by means of mobiles, is not exclusively focussed on the
individual recipient but also takes account of the larger
community environment within which the individual will be
interacting would be a major contributor to the success
both of programs providing health information to
individuals and programs looking to receive health
related information from individuals.
As well, as noted in the article on the young cancer
patients in this issue, the role of electronic online
communities as on-going supports for those with various
types of medical conditions and disabilities is by now
coming into wide recognition and is increasingly being
seen as a necessary component of on-going health
maintenance and support in a variety of areas.
I see this issue as the first step in what I anticipate
will be an on-going dialogue between those with an
interest in ICTs and health and those with an interest in
ICTs and communities, both having as their overarching
concern individual and community health and well-being.
My special thanks to the editors of this special issue Lareen
Newman and Ali Alsanousi both of whom put in major efforts
in ensuring that this special issue saw the light of day.