Design Strategy for Integrated Personal Health Records: Improving the User Experience of Digital Healthcare and Wellbeing

This dissertation addresses the timely problem of designing Integrated Personal Health Records (PHR). The goal is to provide citizens with digital user experiences, sustainable and flexible enough, for gaining control over their personal health information in a seamless way. Most importantly, so that people are able to reflect and act upon their selfknowledge, towards the accomplishment of their good health and wellbeing. Towards this end, the Integrated PHR as an emerging model in the field of Health IT, was the framework that set this research forward on exploring how communication and collaboration between patients and providers can be improved, which naturally impacts the field of HCI. Acknowledging that today patients are the ones who own all that is recorded about their health data, this new model was object of a design strategy that shaped the results presented in this dissertation. These have showed how patients can have more control of their health over time, through a patient-centered, organic system, which has the ability of combining multiple sources of data both from patient and provider side. As this new type of PHR fosters the creation of integrated networks, this milestone was achieved in this research by interacting with cross-channel user experiences that took part of nationwide healthcare ecosystems. The work presented herein, has demonstrated through the analysis and development of two use cases in cooperation with organizations connected to the Portuguese Ministry of Health, how an Integrated PHR can be a powerful personal tool, to be used by the citizen with undeniable value to the demands of an aging society. The use cases structured the thesis into two parts. The first part in collaboration with the Portuguese National Patient Portal, combines an Integrated PHR and incorporates the Portuguese Data Sharing Platform (PDS), which can be used by any Portuguese citizen. This use case study led to a proposal of the portal by also creating a foundational model for designing Integrated PHRs. The second part in collaboration with the Portuguese National Senior Telehealth Program (Saúde 24 Sénior), led to another proposal for an Integrated PHR, applying the outcomes from Part 1 and the requirements that derived from the findings explored in this second use case study. The proposed solution, has the potential to be used by the Portuguese senior community in the scope of home assistive care. Both proposals applied a user experience design methodology and included the development of two prototypes. The engagement of the stakeholders during the two case studies was accomplished with participatory design methods and followed a multidisciplinary approach to create solutions that would meet the human, politics and behavior interdependencies that were inherent to the process of working with large healthcare organizations. The provided contributions from this thesis intent to be part of a transition process that is changing the behavior of the healthcare sector, which is increasingly moving towards the improvement of the patient-provider relationship, patient engagement, collaborative care and positive computing, where digital technologies play a key role

Effective implementation and monitoring of telehealth and telecare in Ireland: learning from international best practice.

This document synthesises the information provided in a number of papers relating to Telecare/Telehealth commissioned by and developed for the National Disability Authority between 2014 and 2017. The papers in question were developed by researchers in Work Research Centre (WRC), the National Disability Authority and the University of Ulster, and this report has taken key learning and information from each of them to create this composite briefing paper