Genia is a collaboration plattform for children suffering from long term illness Genia addresses difficulties in sharing personal experience and the childs wish to be heard and understood both within the family and by healthcare professionals. The applications support both collection of data, and sharing of experiences related to personal wellbeing. It is difficult to see patterns appearing over time and to connect experienced symptoms with action (advised treatment) and result (experienced health). Genia aims to increase learning and understanding by enabling for analysis and reflection based on observations in daily living. Genia is ready to link families with their clinical microsystems via national Swedish eHealth infrastructure and with their research and quality improvement platforms via so-called national quality registries. Inspired by learning from scholars at the Dartmouth Institute, Andreas Hager who has a daughter with CF, or cystic fibrosis, saw the importance of facilitating for everyone involved in the clinical microsystem to work together, where child patients and families could contribute and take a more qualified role in lessening the illness burden, increase trust and sense of customization. The pioneer user group is therefore quite naturally the CF-community. Daily life with CF. Patients and families living with CF are super users of healthcare and welfare services. They are part of the 10% of the population responsible for around 70% of public spending in the area. Even though families and individuals develop their entirely own personal strategies for self-management, there is an opportunity for smart phone applications to be a support in disease management in different ways. Skillful living with the difficult will enable a life like yours and mine, create time and make professional support systems more efficient.

What is CF? See Olis view on life with cystic fibrosis http://youtu.be/WuI72eMrIQI. How does Genia work? See short presentation film http://vimeo.com/84253336. What are some of the theories and service design work behind the app? See Kajsa Sundesons master thesis

in service design https://www.dropbox.com/s/uoovq3zjg6iaffm/Kajsas%20Thesis%20FINAL.pdf. What does the child say about the wish to get better understood? See Sonias movie

http://youtu.be/vy34SEBx4_s. Want to learn more? andreas.hager@genia.se and www.genia.se.

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3.3.2. DESIGN DRIVERS

The findings are summarized into three sections that forms the design drivers. Even though possibilities are seen for Genia to be used by seve-ral age groups, the foremost age group to consider in design is seen to be children between 10 and 15 years. This is the age span when starting to take more personal responsibility in self-management of disease, simultaneously this is the age where children often start to use own smartphones. Hence, the design drivers focus primarily on a target group of children between 10 and 15 years and their families.

Support collaboration between the private and the professional sphereMY RESEARCH CONFIRMS the need of a support in understanding CF on an individual level, and in making the monthly visits at the clinic more informed, which is the core idea of Genia. Being more informed is seen to improve care. This need is clearly reasserted by the clinicians, as

C A S E G E N I A

Support in sharing experiences from daily life

Understand disease in individual level

Symptom - Action - Effect

SUPPORT COLLABORATION WITH CARE TEAM

IN LAYING THE CF-PUZZLE

EASE MANAGEMENT

OF CARE IN EVERY DAY LIFE

Need for structure & sense of control

Ease information sharing in the private sphere

MOTIVATEADHERENCE TO

TREATMENT

Take own responsibility and becoming independent

Enable connection to others in the same situation

80-90% of CF-treatment builds on the patients story

If I dont note things down I forget what it was I should

remember

I know I should do my exercise, but sometimes I just

cant make myself do it

FIGURE 3.21 Findings from research that forms three design drivers.