Patient portals as a means of information and communication technology support to patient-centric care coordination – the missing evidence and the challenges of evaluation: a joint contribution of IMIA WG EVAL and EFMI WG EVAL

Objectives - To review the potential contribution of Information and Communication Technology (ICT) to enable patient-centric and coordinated care, and in particular to explore the role of patient portals as a developing ICT tool, to assess the available evidence, and to describe the evaluation challenges.

Methods - Reviews of IMIA, EFMI, and other initiatives, together with literature reviews.

Results - We present the progression from care coordination to care integration, and from patient-centric to person-centric approaches. We describe the different roles of ICT as an enabler of the effective presentation of information as and when needed. We focus on the patient‘s role as a co-producer of health as well as the focus and purpose of care. We discuss the need for changing organisational processes as well as the current mixed evidence regarding patient portals as a logical tool, and the reasons for this dichotomy, together with the evaluation principles supported by theoretical frameworks so as to yield robust evidence.

Conclusions - There is expressed commitment to coordinated care and to putting the patient in the centre. However to achieve this, new interactive patient portals will be needed to enable peer communication by all stakeholders including patients and professionals. Few portals capable of this exist to date. The evaluation of these portals as enablers of system change, rather than as simple windows into electronic records, is at an early stage and novel evaluation approaches are needed.