Det undrer mig, at ingen af gruppens medlemmer har ønsket at
kommentere og diskutere dette forehavende og de udfordringer, det frembyder.
Er der nogen af Jer der orker at kommentere nedenstående:
The first-person point of view in medical humanities: An Invitation
to join user-driven development of a freeware tool for diary-keeping
25, 2012 by Centre
for Medical Humanities
Danish psychologist Kresten Bjerg writes: What characterizes
the frontier of medical humanities is shared attention to the
individual, the conscious subjective experience, mind and self in the
health-field. The first-person point of view comes into the
foreground, whether the issue is memory, madness, depression,
spirituality, creativity, trauma, smoking or empathy.
We find efforts towards user-driven healthcare, and a new focus on
the patient journey, through narrative medicine. But what seems
missing, across the medical humanities, is taking into realistic
account the general characteristics of modern citizen/patient
lifeworlds and everyday experience.
We are situated in a transitory historic phase, where conventional
and habitual everyday life forms are undergoing proliferating and
accelerating transformations. Demanding and complicated technological
and institutional innovations mean that citizens – and not least
patients – all over the globe are finding themselves in new uncharted
contexts, situations and life conditions, for which no adequate
precedence exists. Conventional habits, tools and problem-solutions
are obsolete, and relevant tools are difficult to recognize and
evaluate, pay for, learn and apply, let alone integrate with each other.
It seems highly likely that more and more citizens will be exposed to
new demands – and new options – from technological innovations. The
challenges we all meet now (which include temptations from providers
of proprietary services and expensive drugs, demands to remember
passwords and usernames and pincodes, and the shift away from
face-to-face exchanges) create a new kind of “digital citizenship.”
The individual finds himself/herself in as a lonely explorer, sailing
through unknown information waters, traversing unpredictable
administrative jungles – all while trying to alleviate bodily
afflictions, pains, sufferings, and mental and physical handicaps;
pursue relative compliance to medical prescriptions; and dea with more
or less stressful economic conditions, unemployment, hospitalization,
sick relatives and old age.
New “shareabilities” are sought, sms-ing, blogging, facebooking and
twittering, patientslikeme etc. in attempts to deal with modernity and
self-identity. But the basic “Know thyself” is further away than ever.
The streams of everyday experience leaves little room for constructive
self-reference and reflexivity, not least as pen and paper is replaced
with the mobile touch-screen.
Granted such inevitable exposure it is logical to look for ways to
empower citizens/patients through some type of help-to-selfhelp tool.
As an old researcher in psychology I have been working – the last 14
years – to develop a tool to help the individual citizen to handle a
private and personal homelife, coping with the old life and all the
new conditions afforded with a personal laptop, mobile, SMS, email and
Internet. I have developed a toolset, which can be used by any citizen
with a laptop, to document, to themselves, their personal and private
life-exploration, maintaining an electronic logbook to record and
retrieve, when they care, whatever events, actions, states, thoughts,
dreams, prescriptions, intentions and failures they personally feel
relevant during the days and nights, weeks, months and years of their
most personal and invisible life.
It is a question of integrating a domestic household, a bodily
household and an information household.
I invite the medical humanities to join the beta-testing of the
“personal electronic diary” program.
It is politically and ideologically important, that this is – and
shall remain – freeware.
And it is important that users of many kinds (researchers,
caregivers, and patients with all kinds of afflictions) get involved,
use it for at least a period, and contribute with discussions,
feedback critique, questions and suggestions for its further improvement.
Although the user-interface of the present version is in English –
the interface of coming versions is rather easily translated to any
other language, and could become an available free citizen-tool in all
cultures and all countries within very few years. A further aspect of
the internationalizing is a special feature of the program: the
development of an extensible arsenal of pictogram-type
“glyphs”(stored in fonts, like letters) useable as shorthand to
quickly denote typical habits, actions, states, situations in the
everyday domestic, somatic and informational household. Contributions
to the development of glyphs for affliction-specific phenomena,
events, situations, treatment, measurements etc are important.
So please click here to see
demo of the program, and to download for yourself one or more copies
of the software to your own laptop, and click here to visit a
wiki for users of the program. The extreme adaptability of the tool,
making it fit for users with all degrees of computer literacy, puts
some demands to the beginner. You must count on using some time
getting to know the options and start arranging, accomodating and
personalizing the interface to your own taste and needs.
Also keep in mind that various strategies for such diary-keeping can
be chosen and alternated:a) just once a day, or even more
seldom, perhaps at the same time, typing a short or long spontaneous
text, narrating events, situations and states, without specifying
when;b) input more times, along the day or night, with automatic
timestamping, and possible occasional , use of the glyph shorthand –
e.g.symptoms,medicine, mail and phone in and out;c) once or more
times a day, with use of retospective timestamping and more
differented use of glyphs, optionally also annotating to earlier
entries;d) employing counting and updating functions, e.g.
Cigarettes, alcohol, medicineintake, physiological measurements (Blood
pressure etc) and sleep-length;e) employing built in
quotation-options to user-labeled thematic fields, e.g. own doctor,
own body, relatives, etc.
For more information, see “Dimensions
of the Patient Journey – charting and sharing the patient journey
with long term user-driven support systems” in: Eds. Rakesh
Biswas & Carmel Mary Martin ”User-driven Healthcare and
Narrative Medicine: Utilizing Collaborative Social Networks and
Technologies” (IGI Global, 2011)
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