The Journey with Illness

The Center for Digital Health Humanities introduces a humanities perspective into a field dominated by the language of technology and start-ups.

The Center activities tackles 5 key areas focusing on digital and technological health innovation from the perspective of its impact on individuals, groups, identities, and different cultures. Our core matrix is what we dub  “the journey with illness”. Its stages establish our  starting point for an evaluation of the impact, the effectiveness, and the opportunities created by the digital health revolution.

The journey with illness is simultaneously the focus, the driving metaphor and the structural map organizing all of our activities, events, research projects.

 

Before the illness

Online information, apps, the quantified self, and diagnostics have greatly expanded the social discussion on health and the definitions of normal vs pathological. This is impacting significantly on the construction of social health alarms, body perceptions and experiences, and strategies for prevention.

 

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Meeting illness

The first encounter with an illness may occur online. Perceptions and experiences are increasingly mediated firstly through an implicit online self-diagnosis, built on google search and wikipedia. The systematic monitoring of online conversations about pathologies is becoming more and more important for a better understanding of individual and collective representations of illness.

 

The treatment

Apps to monitor symptoms and share information with doctors, online patient conversations, big data on pathologies and reactions to drugs; the acceleration of digital and technological innovation must go hand-in-hand with a reflection on changes in the patient-doctor relationship, doctors’ training, the impact of the efficacy of and adherence to treatments. New opportunities are opening up to enhance narrative medicine on a large scale and to differentiate cultural attitudes to treatment.

 

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When the illness is forever

The support of online communities, devices, and apps becomes fundamental in the case of chronic illness. Living with an illness forever can be something radically different from what it was in the past. The processes of social marginalization, needs of caring, and impact on identity can be reduced and treatments increasingly personalized.

 

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When the illness is over

An illness isn’t over when the symptoms disappear. Above all in the case of invasive illnesses, new technologies, the online community and apps can become important references for the facilitation of reintegration in social, professional, and family life, helping individuals regain the fundamental emotional and relationship dimensions of their lives.

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