Selfcare for Chronic Patients

Self-care, telemonitoring and multi-dimensionality in P-2-P interfacing

I raise the question how a tool 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)

-can be fitted to medical needs

I explained the general qualities of a prototype electronic diary in my lecture yesterday.

The first 8 slides here summarize most relevant aspects of that, before approaching the topic of medical needs

PHENOMENALOGPresentation of a program for private diary keeping

It is developed for users to arrange, furnish, adapt and use according to their own habits and needs, personal relevancies and themes.

And it includes options for supplementing diary text with pictograms as a kind of shorthand for typicality's in their everyday life.

Welcome

Main Window

The glyphs menu

Body

Body-window

Phenomenalog-structure

RELEVANT LINKS

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?

Efforts like

www.newhealthpartnerships.org,

www.improvingcroniccare.org

,www.patienteducation.stanford.edu

www.expertpatients.nhs.uk

are introducing concepts of ”self-monitoring”, ”shared electronic journals” and ”patientt

education”.

The prototype freeware electronic diary PHENOMENALOG can be downloadet from

www.phenomenalog.dk.The windows version now comes with an installer, extremely easy to start

up.Mac and Linux versions still demand that user install fonts in fontfolders

t

Virtual patient1

Virtual patient2

Virtual patient3

Virtual patient4

Virtual patient5

Virtual patient6

Virtual patient7

Virtual patient 8

Virtual patient 10

Statistics

This is an accumulating scrolling field, the data of which can be transferred to other applications.In its present format it is of very limited use

It is a pressing task to construct a process to transform it to curves, with options for zooming in and out, so user is empowered to discover possible causal relationships.

Daily glyph - distributionAnother type of distancing perspective is available through the automatic extraction of the glyphs used, to illustrate their distribution over each 24 hour period.The layout is hampered by the limited space available. But the awkward solution at least suceeds in leaving room for capturing 4-5 glyphs in any of the 144 10-minute periods around the clock.This offers a possibility for the user to page back and forth in the diary, looking for recurrent and/or exceptionalbehavioural patterns.

PerspectivesThe prototype presented can justly be criticized for lack of a well-defined target-group.It constitutes an attempt to create a starting point for networked cooperation about further cross disciplinaryand cross-cultural developments in very different directions, -as hinted in this preliminary map:( and for all such target-groups at least in the direction of adding new required glyphs to the stock,e.g. symptoms)

Example #1It is up to the single user to improvise the glyph-button placings – and maybe after a while to introduce some kind of system. Here is an example from one user:

Example #2 And here the author’s own unclear mess:

Supplementary windows

It early became clear, that as the stock of glyphs was growing, it would be expedient to enable placements of some of them just a single click further away.For this and other purposes the day cards have a number of parallel windows, each with its own (redesignable) topologyUser can choose to use one or more of these, or just keep them hidden.•Oikos-window, which abstractly represent the domestic sphere in its societal embedding*Home-window, where user – if placing an appropriate graphic- can refer to locations in own home*Body-window, for reference to locations in/on own body*Garden-window, for references to garden activities*Environs-window, for reference to narrow or wider neighborhood*Family-window – for reference to individual family members

*Workplace-window- for reference to topology and activities in own office, workshop or working place

The other glyphs available

Here follows, to complete the picture, the remaining tables of glyphs available in the presentPhenomenalog prototype.

The 450 glyphs are only a beginning. Many of them have to be improved, and many more willhave to be added.

2000 to 3000 is the primary goal,

- which ones will be decided on the basis o advice from prospective users

Children

Social

Householding

Food

Cultivate

Smoking

Info

Outside

Sport

State

Reflection

Oikos-window

CreditsThe concept of Phenomenalog and the first prototype-versions were developed in 1994-1995 in collaboration between Bjørn Nake, Birgit Leick Lampe and students at the department of psychology, University of Copenhagen, and in the teaching of qualitative research methods, around the Experimental Home project there (1980-1999)

The continued testing and development of the HyperCard prototype versions was since 1996 conducted in a collaboration between Steen K. Andersen and Kresten Bjerg, and intensified 2004- 2008 in the thorough redesign in its conversion to the new "REVOLUTION" integrated development environment, with the advantage of creating standalone versions for Windows, Macintosh and Linux operating systems.

Credit is due to the Institute of Psychology for hosting Kresten Bjerg also after his pensioning in 1998, and to Steen K. Andersen for his thousands of hours of voluntary work on the project. Students from Copenhagen Technical School have also contributed with some of the glyphs.

Credits are also due to Scandinavian Tobacco Company for sponsoring the start of the project with 8 of the first Macintosh PowerBooks in 1994.

Credits are due to resources from the communities of "HyperCard" and "Revolution" developers, among these foremost Mark Schonewille (Economy-X-talk.com) Sarah Reichelt and her DateTime.rev collection, Richmond Mathewson for his Paint widgets, Eric Chatonet, Klaus Major, Mark Talluto and others.Poul Grønhøj has patiently tested out version after version after version of the program.

Concerning the program adress kresten.bjerg@psy.ku.dkConcerning he broader bacgrounds of the endeavour see www.bjerg.psy.ku.dkConcerning the actual program, see www.phenomenalog.dkConcerning IT-political aspects see www.frihedsraad.wetpaint.com (presently only in danish)

Latest publication: http://obs.obercom.pt/index.php/obs/article/view/198