NBN Based Telehealth Program for People Living with Cancer and Those Requiring Palliative Care

Telehealth has been a major component of Australian Government ICT promotions for (at least) the past 14 years - I well recollect as a rural/remote Telecentre Manager participating in the year 2000 national Federal Govt Telecenter Telehealth programme and telecons with our (then) Prime minister John Howard on this very issue - unfortunately then as now the "devil is in the detail" - in this latest promotion the quoted 7,000 services provided by over 1,200 clinicians...." - actually equates to less than 6 consultations per registered clinician; the vast majority of which are simply requests for information and are not further followed through.


However, I have a major problem with this type of application and
 the related ones for the elderly and others (and please note that over the
 course of this year the Journal of Community
 Informatics will be coming out with major special issues on Community
 Informatics and Older Persons (edited by Gene Loeb) and a second on Community
 Informatics and Health (edited by Lareen Newman and Ali
 Sanousi).

 My problem is that this application (and regrettably
 most of the applications described in the articles in the two special issues)
 are evidently based on the assumption that folks with cancer or other
 diseases/conditions, older persons and so on are somehow living/functioning as
 totally autonomous self-sufficient individuals and that whatever ICT supports
 are provided need to have that as an inbuilt design
 assumption.

 In fact of course, they don't live as autonomous
 individuals--in most cases they live as part of families, even in a lot
 circumstances extended families and for the lucky ones they also live in the
 context of supportive communities and community
 connections.

 It is terribly disappointing and I would argue
 profoundly wrong-headed and damaging to be making such an individual
 focussed design assumption.

 There are as I see it at least three problems with
 this:
     1. people don't live this way and
 whatever design that is provided should be based on how people live not on how
 the (system/application) designers choose to see them as
 living
     2. because of these assumptions it
 appears that little or no resources are being directed toward the
 design of ICT supports for families/communities in their providing
 enabling/enriching contexts for cancer patients/older persons or for helping
 patients/elders to make the supportive connections with their
 families/communities etc.etc.
     3. there is increasing evidence
 that supportive families and communities have a measureable impact on
 well-being including medical indicators of patients/elders etc.  By
 ignoring these connections the application designers/implementers are in fact
 harming their target audiences by designing systems which by emphasizing
 individual behaviours foreclose on the collaborative community behaviours that
 reseach is now identifying as so beneficial to health, healing and well
 being.


My doctor in India works from a call-centre and was introduced through a pharmaceutical company with which I have an interest. Fortunately nowadays there are means available for people to access foreign health systems via telehealth (given our rural domestic system is in such a terrible state – if I do seem a little negative in this area it might help by explaining that our local hospital was closed by our previous State Government, not to be reopened, rather replaced by a small clinic without emergency facilities – and given the excessive long waiting lists to see a local GP more and more people are looking overseas for medical assistance).