Among the common chronic diseases, dementias—including Alzheimer disease (AD)—and Parkinson disease (PD) are the most disabling, profoundly impacting the quality of life of older population members and their families [1]. As a result, European health care systems are being challenged by the increasing demand and need for long-term care and services as well as increased health costs [2,3]; therefore, finding and implementing alternative health care solutions to face these challenges are needed [4].

Integrated care is defined as “services that are managed and delivered so that people receive a continuum of health promotion, disease prevention, diagnosis, treatment, disease management, rehabilitation and palliative care services, coordinated across the different levels and sites of care within and beyond the health sector, and according to their needs throughout the life course” [5]. Integrated care is able to help improve care coordination and decrease the costs of care for populations with complex needs [2]. This shift in the type of care for older people does not intend to neglect good disease management but rather to optimize older people’s physical and mental capacities [6]. On the other hand, assistive technologies can help older people with chronic conditions to live independently for a longer period [7], reduce caregiver burden, and improve the work satisfaction of professional carers [7-11]. Recent studies reveal that patients identify technology as something useful that can be used for leisure and to increase their freedom and independence. Caregivers find that technology incorporated into their lives, and into the lives of the people they care for, provides them with increased peace of mind and can ease the interactions with other stakeholders [12]. Furthermore, health professionals consider that technologies reduce their workload and allow them to devote more attention to patients who require it [13].

Personalized Integrated Care Promoting Quality of Life for Older People (PROCare4Life) is a European Commission Horizon 2020 project (grant agreement No. 875221) that recognizes that, today, an integrated care process should be adopted for harmonizing, from a holistic perspective, health models with social services. Therefore, the project intends to develop and test a technology-based, integrated, scalable, and interactive care platform addressed to patients suffering from neurodegenerative diseases, such as PD or dementias; their caregivers; and socio-health professionals. The aims of this 36-month project are as follows: (1) to improve the quality of life of patients, (2) to enable active living and better disease management, (3) to support professionals in the decision-making process, (4) to facilitate efficient communication between all stakeholders, and (5) to ensure reliable and protected access to data within Europe. These aims will be achieved through large-scale assessments across Europe (ie, more than 1500 end users from five countries), with a final scope to validate the reliability of the overall system in a real-life context.

The technology of the PROCare4Life platform works through different components as follows:

UCD is an iterative design process that advocates for actively engaging the users and incorporating their feedback to ensure that tools are developed with a full understanding of their needs and requirements [15,16]. The three key principles that underlie the UCD approach are as follows: (1) the design has to be based on the specific understanding of the users’ needs and requirements [17], (2) the design is refined and reshaped based on the user feedback throughout the whole development, and (3) the design process includes a multidisciplinary team, skills, and perceptions [18]. A number of studies have reported benefits from using UCD in the development of technology-assisted health measures. Bilodeau et al [19] reported that the UCD process facilitated optimization of comprehensiveness and relevance of content among a relatively small sample of dementia patients and their caregivers in shared decision making. Implementing a UCD process iteratively contributed to the development of an app for cancer screening, reflecting the needs and concerns of patients [20]. Also, the UCD process was recently implemented with success to develop a prototype for a digital cognitive aid in the anesthesiology emergency field, demonstrating high usability and user satisfaction [21].

Regardless of these promising results, health technology developers have been criticized for neglecting to incorporate UCD in the development process or for their failure in reporting the integration of a UCD approach throughout the development of their interventions. Possible reasons for this could be the limited resources and time to support the research and usability testing [22].

Integration of care services for older adults was proposed by the World Health Organization [23]. The Integrated Care for Older People (ICOPE) approach emphasizes the need for integrated health care models to be organized, coordinated, and delivered around older adults’ needs, preferences, and goals in the context of their daily lives as a family or community member [6,24]. In fact, in developing a useful and successful technological intervention that meets the needs and requirements of the end users, it is crucial to involve them at an early stage of the design process [25,26].

A review by Vermeer et al [27] indicated that research on the needs of older people living with dementia and their caregivers remained mainly qualitative, with more focus on the needs of caregivers than patients and a clear difference in perspectives. For instance, results from focus groups revealed that dementia patients had some concerns over the use of trackers, while their caregivers had a great interest in their use [28].

A previous information and communication technology (ICT)–based European project named ICT services for Life Improvement for the Elderly (ICT4Life) was funded by Horizon 2020 (grant agreement No. 690090). This project aimed to provide an integrated ICT platform that was able to facilitate integration of health care services and provide better communication between AD and PD patients, their caregivers, and socio-health professionals. ICT4Life had an end-user approach, where the needs and the expectations of the target population were considered throughout the development of the platform, starting with research on users’ requirements. While the use of the ICT4Life platform was accompanied with better and more personalized care for elderly patients with cognitive impairments [29], the research on users’ requirements involved limited study sites and a very low number of participants [30].

Adopting a UCD approach, PROCare4Life intends to build upon what has already been learned and to benefit from the knowledge gained from previous projects. Therefore, the project devoted its first phase to study user requirements and to investigate the key personal, social, health, and psychological factors that influence the daily lives of potential end users. The aim of this project phase is to define users’ needs and expectations regarding the use of technology within the integrated health care system. Collected data shall be used in the setup of the iterative cycles in the pilot phases, allowing a user-centered cocreation of a platform that supports patients, caregivers, and socio-health professionals in their functions.

Research on users’ requirements aims to involve approximately 200 subjects and is planned to take place in five different European countries: Germany, Italy, Portugal, Romania, and Spain. Surveys and interviews shall yield different perspectives. Preliminary results shall flow into workshops utilizing the interaction of potential users with the platform to evaluate and structure its aspects. The overall objectives are as follows:

The study applied a mixed qualitative and quantitative research design and included different modalities of interaction, such as interviews, workshops, and online surveys. The study started by conducting online surveys and interviews; their relevant results were then discussed and analyzed by a multidisciplinary team in order to be used in reshaping the workshops (see Figure 2), which corresponds to the key principles of the UCD approach.

While quantitative research methods are used to provide general facts about a certain topic, qualitative research methods are more important for in-depth knowledge about the experiences and ideas of end users regarding health care issues [31]; qualitative methods have also been used as a way to engage patients and stakeholders in health research [32]. Using a mixed methods design allows the study to yield rich and comprehensive data that can better reflect the participants’ points of view [33] and thereby ensures the end users’ involvement in the project, which is a key principle of the UCD approach.

The study started in April 2020 and ran until September 2020. It took place in five European countries: Germany, Italy, Portugal, Romania, and Spain. Patients were included if they were 65 years of age or older, clinically diagnosed with PD or dementia, and willing to participate in the study. Online survey participants should have a smartphone and/or computer with web access. Patients with significant cognitive impairment, intellectual disability, or other serious psychiatric conditions that affect their ability to use mobile phones or computers were excluded.

Caregivers were considered eligible if they were 18 years of age or older, caring for patients diagnosed with PD or dementia, formal (ie, paid) or informal (ie, not paid) caregivers, aware of the patients’ daily needs, and willing to participate. Online survey participants should have access to a mobile phone and/or a computer with web access.

Socio-health professionals were included if they were qualified and worked in medical or social care for PD or dementia patients (eg, physiotherapists, social workers, and occupational therapists), had a mobile phone or computer with web access, and were willing to participate.

Other stakeholders were included if they were in a responsible position within one of the following four categories: