A participatory information management framework for patient centred care of autism spectrum disorder

Patient-centred care (PCC) is grounded on the relationships formed between healthcare professionals, patients and patients’ family members. This network of stakeholders is frequently found to be disconnected due to the absence of an enabling framework. Active online participation and continuous engagement improves patients’ healthcare experience and healthcare professionals’ understanding of the medical condition. The community setting of PCC further generates crowd intelligence which in turn complements the knowledge of clinical experts. This body of evolving knowledge is a valuable resource with long term impact for both current and new patients as well as healthcare professionals. It is highly relevant for spectrum disorders that usually span across the lifetime of a patient, such as Autism Spectrum Disorder (ASD). A framework provides structure to such a body of knowledge and defines functionality that delivers and sustains its use. This paper presents a participatory information management (PIM) framework for the delivery of PCC for ASD in a health, education and community service setting. The framework is founded on the updated IS participation theory. Driven by patient participation, it expands thereon to intersect community and clinician participation. As discussed in the paper, the potential outcomes are broad, ranging from improved healthcare quality to enabling translational research. An ongoing pilot project applying the framework to ASD is also reported in the paper.

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