The equity paradox: older patients' participation in patient portal development

PURPOSE: This paper reflects on ethical concerns to patient portals design and evaluation approaches and provides a comprehensive overview of methodological considerations to advance patient participation of older patients to patient portal research and development. REFLECTION: Barriers to the use of current patient portals experienced by older patients are concentrated on access issues and difficulties with interpretation of medical content. As patient portals' functionalities are being expanded by means of co-creation and user-testing such barriers often remain unrecognized. A main challenge of these patient participation efforts is namely to include a variety of older patients; foremost autonomous patients seem to participate. By selecting autonomous participants in co-creation or user-testing, design solutions are proposed that specifically benefit the autonomy of that patient, whereas it does not do justice to values and interests of patients who are less independent and are confronted with a wider variety of use barriers. Consequently, there is a risk of widening the gap between those who can use and benefit from patient portals and those who cannot. To prevent this from happening, we propose three main methodological aspects to consider in co-creation and user-testing activities that aim to optimize patient portal functionalities. IMPLICATIONS: We encourage policy makers and patient portal developers to use present-day's momentum to include older patients' abilities, needs and context in the decision-making and investments in further advancing patient portals. We further stimulate future research that aims to improve methods to overcome challenges of older patients' participation regarding design and evaluation of eHealth systems.