Orphanet Journal of Rare Diseases · 2 authors, 2 centres
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This mixed-method study evaluated the design and uptake of the RARE-e-CONNECT network technology in Cyprus, finding that both patients and professionals intend to use it for information sharing and support, but its integration is challenged by prevailing social norms and a lack of supportive policies for telemedicine.
The study describes the design and evaluation of the RARE-e-CONNECT network, a telehealth platform for rare diseases in Cyprus. A participatory mixed-method approach was used, including a needs assessment survey with 27 patients/families and 26 healthcare professionals, interviews with 40 patients/families and 37 clinicians, and analysis of platform activity from 210 professionals and 251 patients/families. However, user behavior was significantly affected by social norms favoring individual practice and missing policies for telemedicine and shared care. The study concludes that such collective intelligence tools need formal consideration within national and European policy frameworks to promote proactive rare disease diagnosis and facilitate patient pathways.
