To cure is good, to care is ……..

Added-value of social software platforms

Developing therapies for rare disorders, so-called orphan drugs, is becoming increasingly popular within the pharmaceutical sector. However, developing a drug takes a long time: around 10-15 years. Moreover, for some rare diseases developing a curative therapy based on the current state of scientific knowledge may not be realistic. Compared to drug development (= cure), health care innovations, like e-health, and their implementation in clinical practice (= care) may provide a quicker way to improve the quality of life of many rare disease patients.

Recently I came across a highly interesting paper by Moen and Smordal in Work that discuss everyday challenges that patients with a rare disorder (anorectal anomaly) are faced with to “live well”. Managing health in daily live of a (rare disease) patient is associated with a considerable amount of unpaid work that remains largely invisible and under-articulated. The paper describes the design of a social-software platform that will assist patients and family members in their unpaid work. As the authors state their goal is “to reduce patients and their family members trial and error experiences by providing a digital communication platform where their contributions becomes a dynamically, co-evolving encyclopedia of accumulated, systematized strategies, experiences and knowledge”. I can highly recommend reading the paper, because in my opinion it is a superb example of blending a strong theoretical framework and study design with a highly practical approach and implementable outcome. As such it represents an excellent starting point for the design of social-software platforms for other rare disease patients and family faced with similar problems.

In brief, through a series of participatory design workshops with patients, family members and health providers, the authors were able to identify four important aspects of work that in particular parents of a child with an anorectal anomaly are faced with. Apart from having to perform additional routines on a daily basis, parents have to manage and carefully plan their child’s daily live, as well as providing/obtaining comfort to/from each other. As the authors state, what it all boils down to is that all efforts of parents are directed “to reduce child’s vulnerability and seeks to retain as much control as possible to ease the work of self-care and independence of everyday living”.

The overall outcome of the workshops was used as starting point for the design of a social-software platform, called RareICT. RareICT will only allow a continuous collection and exchange of practical strategies and everyday experiences. While designing RareICT the authors were faced with a well-known dilemma associated with health care-related web-based resources: on the one hand the need to share practical experience and exchange of information between peers, but on the other hand having the legal and ethical obligation to maintain privacy, confidentiality as well as ensuring trustworthy knowledge. After careful consideration the authors opted for a semi-open platform.

As the authors conclude designing RareICT is just the start of the next stage: how to retain users’ interest and participation over time and to determine whether it really assists parents in their work of “living well”.

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