Improving the Acceptability and Implementation of Information and Communication Technology-Based Health Care Platforms for Older People With Dementia or Parkinson Disease: Qualitative Study Results of Key Stakeholders.

BACKGROUND: The management of neurodegenerative diseases (NDDs) in older populations is usually demanding and involves care provision by various health care services, resulting in a greater burden on health care systems in terms of costs and resources. The convergence of various health services within integrated health care models, which are enabled and adopted jointly with information and communication technologies (ICTs), has been identified as an effective alternative health care solution. However, its widespread implementation faces formidable challenges. Both the development and implementation of integrated ICTs are linked to the collaboration and acceptance of different groups of stakeholders beyond patients and health care professionals, with reported discrepancies in the needs and preferences among these groups. OBJECTIVE: Complementing a previous publication, which reported on the needs and requirements of end users in the development of the European Union-funded project PROCare4Life (Personalized Integrated Care Promoting Quality of Life for Older People), this paper aimed to report on the opinions of other key stakeholders from various fields, including academia, media, market, and decision making, for improving the acceptability and implementation of an integrated ICT-based health care platform supporting the management of NDDs. METHODS: The study included 30 individual semistructured interviews that took place between June and August 2020 in 5 European countries (Germany, Italy, Portugal, Romania, and Spain). Interviews were mostly conducted online, except in cases where participants requested to be interviewed in person. In these cases, COVID-19 PROCare4Life safety procedures were applied. RESULTS: This study identified 2 themes and 5 subthemes. User engagement, providing training and education, and the role played by the media were identified as strategic measures to ensure the acceptability of ICT-based health care platforms. Sustainable funding and cooperation with authorities were foreseen as additional points to be considered in the implementation process. CONCLUSIONS: The importance of the user-centered design approach in ensuring the involvement of users in the development of ICT-based platforms has been highlighted. The most common challenges that hinder the acceptability and implementation of ICT-based health care platforms can be addressed by creating synergies among the efforts of users, academic stakeholders, developers, policy makers, and decision makers. To support future projects in developing ICT-based health care platforms, this study outlined the following recommendations that can be integrated when conducting research on users' needs: (1) properly identify the particular challenges faced by future user groups without neglecting their social and clinical contexts; (2) iteratively assess the digital skills of future users and their acceptance of the proposed platform; (3) align the functionalities of the ICT platform with the real needs of future users; and (4) involve key stakeholders to guide the reflection on how to implement the platform in the future. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/22463.

Personalized Integrated Care Promoting Quality of Life for Older People: Protocol for a Multicenter Randomized Controlled Trial.

BACKGROUND: Alzheimer disease (AD) and Parkinson disease (PD) are the 2 most common neurodegenerative diseases affecting millions of people worldwide. The Personalized Integrated Care Promoting Quality of Life for Older People (PC4L) project proposes an integrated, scalable, and interactive care ecosystem that can be easily adapted to the needs of several neurodegenerative and chronic diseases, care institutions, and end user requirements. OBJECTIVE: The study protocol developed within the framework of the PC4L project aims to iteratively test the integrated platform and its modules, and focuses primarily on assessing the impact of the proposed solution (ie, the PC4L platform) on patients' quality of life, as well as its usability and feasibility on a large-scale sample size in 3 different scenarios (home, neurorehabilitation, and day care centers). METHODS: A prospective multicenter clinical study is conducted in 5 European countries (Germany, Italy, Portugal, Romania, and Spain) at 6 different pilot centers, for 3 months, in patients with PD, Parkinsonism, AD, and other dementias (ODs). Patients were randomized in a ratio of 1:1 to the intervention group (use of the PC4L system) or the control group (no intervention). The PC4L system consists mainly of a wristband for monitoring parameters such as steps and levels of physical activity, and the PC4L app, which includes different engaging functionalities. Both groups are assessed through baseline and end-of-study clinical evaluations, including assessment of quality of life through the EQ-5D-3L scale. RESULTS: The study protocol is part of a project approved and funded by the European Commission Horizon 2020 (grant agreement number 875221). The ethics committees of all involved centers reviewed and approved the study protocol. The study began with the recruitment phase in September 2022, and enrollment ended in February 2023. Recruitment is now closed (April 2023). The results of this study are expected to be published in summer 2023. A total of 558 patients, 279 per study group, were recruited. The results will allow to clarify the impact of PC4L on quality of life, will assess the empowerment of patients and the medical resources use, as well as the usability of the final version of the PC4L system. It will also provide information on the support of the system as a tool to facilitate the decision-making process. CONCLUSIONS: The PC4L project intends to test a technology-based, integrated, scalable, and interactive care platform on patients with neurodegenerative diseases and proposes a good coordinated care model between all involved actors. Future developments of the PC4L solution may involve caregivers and socio-health professionals in the decision-making process in order to facilitate efficient communication between all stakeholders and ensure reliable and protected access to data within Europe. TRIAL REGISTRATION: ClinicalTrials.gov NCT05538455; https://clinicaltrials.gov/study/NCT05538455. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/47916.

PROCare4Life lessons learned.

PeRsOnalised Integrated CARE Solution for Elderly (PROCare4Life) was an EU-funded project that ran from January 2020 until June 2023, whose focus was to further develop and integrate previous ICT solutions developed by several previous EU-funded projects into a unique modular system able to support the autonomy and empowerment and to increase the Quality of Life (QoL) of elderly people living with Parkinson's, Alzheimer's, or similar dementia, having also tested the system for elderly people living with comorbidities. This article focuses on the methodology and results used to identify the internal lessons learned. PROCare4Life was developed using a codesign approach involving more than 2,000 participants whose input has been listened to and transformed into valuable changes of the system and also into lessons learned included in this case study report. Since the beginning of the implementation of PROCare4Life, there has been a commitment to make invisible knowledge visible through open discussion and including our lessons learned in each of our deliverables. In the last six months of implementation, qualitative research has been implemented by the PROCare4Life consortium to identify and select our most relevant challenges and recommendations for future projects and initiatives. PROCare4Life was highly impacted by the COVID-19 pandemic, and it is acknowledged in the lessons learned. However, the consortium has focused on the recommendations that could be more valuable for ordinary implementation of future projects and initiatives developing eHealth tools for elderly citizens living with conditions that might affect their cognitive or mobility capacities.

PeRsOnalised Integrated CARE Solution for Elderly (PROCare4Life) was an EU-funded project that ran from January 2020 until June 2023, aiming at improving the quality of life of older people living with Parkinson's, Alzheimer's or other dementia using ICT technologies. The term implementation refers to the process of putting a plan or idea into action. It is a complex process that involves multiple stages, including planning, execution, and evaluation. Implementation research is a growing field of health research that aims to study the factors that affect the implementation of health policies, programs, and practices. It can help identify the best strategies for introducing potential solutions into a health system or promoting their large-scale use and sustainability. For PROCare4Life, when using the term implementation it covers all the stages, including ideation and design phases, although focusing on the pilot 3 iterative codesign and testing of the system. Using daily life devices such as smartphones and smart watches, more than 2,000 people have contributed to co-creating PROCare4Life. The three profiles focused on were older people living with Parkinson's, Alzheimer's or other dementia, their main carers and their healthcare professionals, with an ICT system providing direct communication and allowing them to share their health status. Along the journey to develop PROCare4Life, our European consortium has learned many things that we have internally investigated and reported in this article. We have identified 20 challenges and 41 recommendations. We hope that our lessons learned might be inspiring and valuable for others, particularly future projects and initiatives developing eHealth tools for elderly EU citizens living with different conditions that might affect their cognitive or mobility capabilities.

End Users' and Other Stakeholders' Needs and Requirements in the Development of a Personalized Integrated Care Platform (PROCare4Life) for Older People With Dementia or Parkinson Disease: Mixed Methods Study.

BACKGROUND: With what has been known as the "triple-win effect", introducing information and communication technologies (ICTs) in the health care of neurodegenerative diseases is beneficial in delaying the need for institutional care, reducing the associated health care costs, reducing the caregiving burden, and improving individuals' quality of life. 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 Personalized Integrated Care Promoting Quality of Life for Older People (PROCare4Life), which aimed to develop an ICT-based platform for all parties involved in the health care of neurodegenerative diseases, adopted a user-centered design approach, where all users are involved from the inception and throughout the platform development and implementation to integrate their needs and requirements in the proposed platform. OBJECTIVE: This paper presents the results of a study on the needs and requirements of the potential end users (older people with neurodegenerative diseases, caregivers, and health care professionals) and other key stakeholders in the development of the PROCare4Life platform. METHODS: A mixed qualitative and quantitative study design was used, including 2 web-based surveys, 40 interviews, and 4 workshops. The study was conducted between April and September 2020 in 5 European countries: Germany, Italy, Portugal, Romania, and Spain. Both data types were analyzed separately and then merged and interpreted, with greater priority placed on qualitative research. RESULTS: A total of 217 participants were recruited; 157 (72.4%) of them completed the web-based surveys (n=85, 54.1% patients and n=72, 45.9% caregivers), and 60 (27.6%) individuals participated in the qualitative research (20/60, 33% health care professionals; 5/60, 8% patients; 5/60, 8% caregivers; and 30/60, 50% key stakeholders). We identified 3 main themes (T): (T1) experiences associated with illness, (T2) thoughts about the platform technology, and (T3) desired properties. Alerts for adverse events, communication tools, reminders, and monitoring are constantly needed functionalities, whereas ease of use, personalization, and user-friendliness are foreseen as necessary features. CONCLUSIONS: This paper identified the key personal, social, and health factors that influence the daily lives of the potential end users and reflected 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. Although the combination and collection of features for diverse user groups are typical for integrated care platforms, it results in exponential complexity for designers, developers, and users. Contradicting opinions and several concerns in this study demonstrate that an ICT-integrated care platform should not promise too much for too many. Instead, selection, focus, and, sometimes, restriction to essentials are necessary. Users and other stakeholders should be involved in these decisions. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/22463.

Investigating Users' and Other Stakeholders' Needs in the Development of a Personalized Integrated Care Platform (PROCare4Life) for Older People with Dementia or Parkinson Disease: Protocol for a Mixed Methods Study.

BACKGROUND: Dementias-including Alzheimer disease-and Parkinson disease profoundly impact the quality of life of older population members and their families. PROCare4Life (Personalized Integrated Care Promoting Quality of Life for Older Adults) is a European project that recognizes the benefit of technology-based integrated care models in improving the care coordination and the quality of life of these target groups. This project proposes an integrated, scalable, and interactive care platform targeting older people suffering from neurodegenerative diseases, their caregivers, and socio-health professionals. PROCare4Life adopts a user-centered design approach from the early stage and throughout platform development and implementation, during which the platform is designed and adapted to the needs and requirements of all the involved users. OBJECTIVE: This paper presents the study protocol for investigating users' needs and requirements regarding the design of the proposed PROCare4Life platform. METHODS: A mixed qualitative and quantitative study design is utilized, including online surveys, interviews, and workshops. The study aimed to recruit approximately 200 participants, including patients diagnosed with dementia or Parkinson disease, caregivers, socio-health professionals, and other stakeholders, from five different European countries: Germany, Italy, Portugal, Romania, and Spain. RESULTS: The study took place between April and September 2020. Recruitment is now closed, and all the data have been collected and analyzed in order to be used in shaping the large-scale pilot phase of the PROCare4Life project. Results of the study are expected to be published in spring 2021. CONCLUSIONS: This paper charts the protocol for a user-centered design approach at the early stage of the PROCare4Life project in order to shape and influence an integrated health platform suitable for its intended target group and purpose. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/22463.