From "wading through treacle" to "making haste, slowly" in patient data sharing: A comprehensive yet parsimonious model of drivers and challenges to data sharing based on an EPaCCS evaluation and four pre-existing literature reviews

Aims: This study aimed to identify comprehensively the challenges and drivers encountered by Electronic Palliative Care Coordination System (EPaCCS) projects in the context of challenges and drivers in other projects on data sharing for individual care (also referred to as Health Information Exchange, HIE). It aimed to organise them in a parsimonious framework that underpins specific and non-trivial recommendations for steps forward.Data and methods: Primary data comprised 40 in-depth interviews with healthcare professionals from general practice, out-of-hours, specialist palliative care and hospital services; patients and carers; project team members and decision makers in Cambridgeshire, UK. Transcripts amounted to approximately 300,000 words. Secondary data were extracted from four pre-existing literature reviews on Health Information Exchange and Health Information Technology implementation covering 135 studies. A seven-stage analysis process was employed.Results: We reduced an initial set of >1,800 parameters into >500 challenges and >300 drivers to implementing EPaCCS and other data sharing projects. Less than a quarter of the 800+ parameters were associated primarily with the IT solution. These challenges and drivers were further condensed into an action-guiding, strategy-informing framework of nine types of “pure challenges”, drawing parallels between patient data sharing and other broad and complex domains of sociotechnical or social practice; four types of “pure drivers”, defined in terms of whether they were internal or external to the IT solution and project team; and nine types of “oppositional or ambivalent forces”, representing factors perceived simultaneously as a challenge and a driver. Conclusions: Teams working on data sharing projects may need to focus less on refining their IT tools and more on shaping the social interactions and structural and contextual parameters in the midst of which they are configured. The high number of “ambivalent forces” speaks of the vital importance for data sharing projects of skills in eliciting stakeholders’ assumptions; managing conflict; and navigating multiple needs, interests and “worldviews”, amongst others.