Self-care, telemonitoring and multidimensionality in person-to-person interfacing
A new angle on self-management in chronic disease
Strand: COST294-MAUSE
Keywords:
Self-management, Shared care, Shared journal, Diary, Compliance, Chronic Disease, Health care, Health costs, Open source, Freeware, Multimedia Interfacing, Tele-monitoring
Research Question:
How can we improve telemedical person-to-person communication and educate patients in their IT handling of their handicaps by ways of IT-self-monitoring?
Theoretical framework:
Efforts like www.newhealthpartnerships.org, www.improvingcroniccare.org, www.patienteducation.stanford.edu and www.expertpatients.nhs.uk
are introducing concepts of ”self-monitoring”, ”shared electronic journals” and ”patient education”.
Target groups include Diabetes-2, Asthma, Heart diseases, Hypertension, Anticoagulants treatment, Depression and Alcoholism;
but also - more generally- “shared care” and “self-management” approaches for people with chronic conditions.
It is time to consider the shared interests between all such approaches, be they as different as they are, across the specialised medical fields.
For each of these target groups, projects are developed, with demands and offers to patient-interfaces, including for each their specific tests and monitoring tools.
They all aim to relate to the individual citizens via their personal computers, establishing exclusive, health-focussed interfaces for shared electronic journaling.
But in doing this, they may be overlooking the obvious: the basic new conditions for self-presentation and close communication afforded by the computer and access to the Internet:
A. The entire possible set of options for electronic interfacing self around the clock, available to the laptop user.
B. The wide range of options for electronic interfacing others, extending from telephone, SMS and e-mail to long, cheap, hands-free face-to-face, but also (through head mounted camera) room-to-room and (jet unusual and expensive) desktop sharing.
They may fail to see “the electronic journal” as just one dimension of “a person’s mobile laptop diary”.
And they may fail to see “the electronic client-helper interfaces” as narrowed-down versions of “electronic close interfacing with trusted others”
Research methods:
My own research has focussed on means permitting us to follow our own endeavours, habits and thoughts in an electronic journal (across the cerebral hemispheres: analogue -in pictograms- and digital -in words) understood as illustrated diary. (1)
Here one’s body constitutes a necessary frame of reference, even for the healthy person
So, before focussing on any specific target group, we might cooperate to find general formats for personal body referencing over time, in a diary. 2-D and 3-D maps of ones body, permitting one to bookmark and comment spots and areas anywhere in ones body.
General formats can also be created for visualizing in the diary relevant physiologic parameters over time. Beginning with the most obvious: curves of sleep length, number of pills, and for some: numbers of colas or drinks or cigarettes, --or injections, - maybe as basis for occasional reflections. If daily blood pressure monitoring, daily bloodsugar-selftest, daily bodyweight etc. were enabled, this would just enrich the picture
Many such data could a priori be accepted for sharing with one or more helpers.
As regards the text of a private personal diary, sharing should of course be limited to dated quotes from it, concerning symptoms, advices and prescriptions received and relative compliance.
In all of this we can see the medical interfacing as an extension of the persons interfacing her- or himself.
Seeing client-helper as a special case of future close multimedia interfacing with trusted others, points to important improvements in the long distance person-to person communicative space.
To the extent our now-and-here, within-sight and within-reach info-environments (including desktop) now electronically can be made shareable, participants can point in real time to spots and areas both in own and others’ body, paraphernalia, instruments, surroundings, practical situations, sequences of typical events.
Interfacing the chronic patient might well empower the patient to display and refer not only to his body but also to his room, even showing, in a conversation, by pointing and looking at things.
Citizens will increasingly depend upon, and anchor themselves through information in and out from their computers. Their acquired orientation, personal inputs and outputs, trails and landmarks across Internet sites and neighbourhoods will increasingly reflect and condition their thinking and problem solving.
To the extent the option of showing/sharing what can be seen on ones laptop is an evidently relevant feature in future close communication between laptop users, it enables to share evolving personal patterns of subjective relevance on the Internet in detail and over time.
Citizens´ dealing privately with all this – not to speak of private dealing with IT-tool use – will, also more generally, profit from being shareable in distance-conversations with close friends and trusted helpers.
“Patient literacy” and “patient education” explicitly refer to the knowledge’s distributed and distributable on websites and wikis. If patient education is an aspect of the shared health-management it should support telecoaching within the frames of the patients further orientation on the Internet.
Such added features in interfacing the lonely handicapped and chronic patients would at least compensate somewhat for the missing corporeal visit of the helper.
Expected Outcomes:
The expectable competitive market-games among developers of new patented electronic journal software tools for this and that target group of patients implies increasing and unnecessary expenses from public and private healthcare budgets and may slow down more widespread adoption of the health cost reducing self-management turn.
So we must discuss the alternative: networked cross-disciplinary cooperation in development of open-source and cross-platform electronic diary freeware tools (translatable across languages and adjustable to the different demands of cultures and of target-groups)
In a time of recession and inescapable reductions in healthcare-budgets the rationality of such an approach should be convincing.
(1) Kresten Bjerg: Empowering Citizen Self-Documentation: Re-inventing the diary
Observatorio (OBS*), Vol 2, No 2 (2008) www.obs.obercom.pt/index.php/obs/article/view/198
(2) Kresten Bjerg: Personal Electronic Journaling (abstract to this conference) www.slideshare.net/kresten.bjerg
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Paper fits best the “MAUS” strand of the Copenhagen conference.
It will be supplemented with a second paper: “Personal Electronic Journaling”
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