Community Informatics for Improving Health
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.