The first-person point of view in medical humanities: An Invitation to join user-driven development of a freeware tool for diary-keeping

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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NOTE: The Centre for Medical Humanities is not involved in the testing or development of this software; all questions should be directed to Kresten Bjerg.

About Centre for Medical Humanities

Centre for Medical Humanities
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