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

Expectations to data : Perspectives of service providers and users of future health and wellness services

The healthcare and wellness sector currently attempts to provide more proactive service models with data-driven solutions. This study examines the expectations and values related to personal data i.e. data valences from the perspective of service providers and individual users. The study is based on the analysis of extensive empirical material collected through interviews and a collaborative workshop. The data was collected in one cultural context, Finland. The results suggest that the potential service providers and users have similar expectations regarding self-evidence of data while the main differences concern the expectations of transparency. The results of the study propose some basic requirements for the development of personalised data-driven services in future. The study suggests that basic requirements for the development of future data driven services concern expectations to usable data visualisations, data as a motivator, data accuracy and data transparency. Even though there are varying expectations to personal health data and even some concerns, it can be seen that here different ecosystem actors primarily perceived the wider use of personal health and wellness data as a positive trend. It can be concluded that collaborative personal data-driven service ecosystems are an integral part of development towards proactive service models in healthcare.Peer reviewe

Can caregivers trust information technology in the care of their patients? A systematic review

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) requires that healthcare providers allow patients to engage in their healthcare by allowing access to their health records. Often patients need informal caregivers including family members or others to help them with their care. This paper explores whether trust is a key factor for informal caregivers’ decision to use health information technologies (HIT) including electronic health records (EHR), patient portals, mobile apps, or other devices to care for their patient. Six reviewers conducted a comprehensive search of four literature databases using terms that pertained to a caregiver and trust to investigate the role trust plays when caregivers use HIT. While trust is a key factor for the use of HIT, it the researchers only identified ten articles that met the research question thresholds. Four main topics of trust surfaced including perceived confidentiality, perceived security, technological malfunction, and trustworthiness of the information. Trust is a critical factor for informal caregivers when using HIT to assist in the care of their patient (child, loved one, parent, or acquaintance). Based on the findings, it is clear that more research on the use of HIT by caregivers is needed