End-Users and Other Stakeholders’ Needs in the Development of a Personalized Integrated Care Platform (PROCare4Life) for Older People with Dementia or Parkinson Disease: Mixed-Methods Study (Preprint)

Abstract

BACKGROUND With what has been known as the ‘triple-win effect’, introducing information and communication technologies (ICTs) in the healthcare of neurodegenerative diseases is beneficial in, “(1) delaying the need for institutional care, and reduction of the associated healthcare costs, (2) reducing the caregiving burden and (3) improving individuals’ quality of life (QoL)”. Nevertheless, the mismatch between the users’ expectations and their actual needs remains one of the main challenges that can reduce the usability of technology solutions. Therefore, the European project PROCare4Life (Personalized Integrated Care Promoting Quality of Life for Older People) that aims to develop an ICT-based platform for all parties involved in the healthcare of neurodegenerative diseases, adopts a user-centered design approach, where all users are involved from the inception and throughout the platform development and implementation in order integrate their needs and requirements in the proposed platform. OBJECTIVE This paper presents the results of the study which aimed to identify the needs and requirements of the potential end-users (older people with neurodegenerative diseases, caregivers, and healthcare professionals), and other key stakeholders. in the development of the PROCare4Life platform. METHODS A mixed qualitative and quantitative study design is utilized, including 2 online surveys, 40 interviews, and 4 workshops, conducted in five European countries: Germany; Italy; Portugal; Romania; and Spain. Both data types were analyzed separately, then merged and interpreted. This study placed a greater priority on the qualitative research, with quantitative research playing a supportive role. RESULTS The study took place between April and September 2020. A total of 217 participants were recruited, 157 completed the 2 online surveys (85 patients and 72 caregivers). 60 participants took part in the qualitative research (20 healthcare professionals, 5 patients, 5 caregivers, and 30 key stakeholders). We identified three main themes (T): (T1) experiences associated with illness; (T2) thoughts about the platform technology; (T3) desired properties. Alerts for adverse events, communication tools, reminders, monitoring are constantly needed functionalities. While, ease of use, personalization, and user-friendliness are foreseen as necessary features. CONCLUSIONS The paper identified the key personal, social, and health factors that influence the daily lives of the potential end-users, as well as reflecting on their needs and expectations regarding the design of the proposed PROCare4Life platform. The collected data were useful for the development of the PROCare4Life platform. While combination and collections of features for diverse user groups are typical for integrated care platforms, results in exponential complexity for designers, developers and users. Contradicting opinions and several concerns in the present study demonstrate that an ICT integrated care platform should not promise too much for too many. Instead, selection and focus, and sometimes restriction to essentials is necessary. Users and other stakeholders should be involved in these decisions. International Registered Report Identifier (IRRID): DERR1-10.2196/22463 INTERNATIONAL REGISTERED REPORT RR2-10.2196/22463