Digital technologies are essential components of sustainable health systems and universal health coverage. To realise their potential, digital health initiatives must centre around the wider health needs of the population and be integrated into the digital health ecosystem.
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TeNDER is co-organising a workshop titled “QUality of LifE Support SysTem for People sufferIng from COgNitive impairments or intellectual disabilities,” which is set to take place during the PETRA Conference 2022 (from 29 June to 1 July).
The conference takes its name from PErvasive Technologies Related to Assistive Environments. It is an annual event that gathers researchers from different disciplines working on computational and engineering approaches to improving the quality of life of people in diverse settings (work, home, school, etc.).
Our workshop will focus on novel technologies that aim to enhance the quality of daily living. We welcome submissions from researchers and project partners from different scientific domains working on serious games and gamification for cognitive assessment, sensor networks for pervasive health care, assistive technologies, etc. (see full list below).
In addition to facilitating discussions and workshop activities, we will present our current findings alongside EU co-funded project and fellow host, QualiSID. If you wish to participate, please submit your conference paper by 10 March 2022 (the submit link is on the left column).
On 16 November 2021, Nicholas Vretos presented TeNDER during a webinar organised by PlatformUptake.eu on digital solutions for active and healthy ageing.
The webinar gathered representatives of different stakeholder groups: user advocates, authorities (public health projects) and facilitators, open platform providers, Active and Assistive Living (AAL)/Active and Healthy Ageing (AHA) solution providers, and partners in EU projects working on open platforms and AAL/AHA solutions.
Frederic Lievens and Alexander Nikolov from PlatformUptake.eu introduced and moderated the webinar and discussions, which kicked off with a conversation on identifying needs and requirements, specifically in the context of AHA. This first conversation integrated the perspectives of users, as well as authorities (a representative from the municipality of Aarhus) and facilitators (an innovation lab in The Netherlands).
This was followed by
presentations that showcased the state-of-art in the AAL/AHA solutions, which then led to current developments in Europe and Japan (in collaboration with European researchers), funded by the European Union’s Framework for Research and Innovation (Horizon 2020). During this session, Dr. Vretos presented TeNDER’s integrated care system, focusing on the technical innovations and on the strategic steps the project is taking to overcome adoption barriers. Some of these steps include: continuous user co-creation, consistent legal and ethical monitoring and assessment, and person-to-person support for elderly users with low digital literacy.
This exchange of ideas and best practices, as well as the potential networking opportunities, were facilitated by PlatformUptake.eu in the framework of inter-project collaboration.
Within the European Week of Healthy and Active Ageing framework, PlatformUptake.eu organised a workshop on 18 October titled “Large-scale uptake of open platforms in the AAL/AHA domain.”
Javier Ganzarain and Frederic Lievens from PlatformUptake.eu hosted a panel discussion on assistive technologies’ role in the Active and Healthy Ageing (AHA) domain. The workshop facilitated a discussion on the benefits of platforms that support Active Assisted Living (AAL), such as TeNDER, and the existing barriers to adoption.
Among the potential benefits of assistive technologies, helping people with chronic diseases live more independently and longer at home as they age remains vital. Platforms such as TeNDER can support this by creating an environment where patients feel safe, knowing that if their conditions deteriorate, their caregivers and health and social care providers will be alerted.
Ricardo Vitorino from Ubiwhere not only re-visited the benefits of assistive technology, but he also focused on one of the core enablers of these systems: interoperability – or the communication between different devices, platforms, and networks.
By imagining a networked environment as a central nervous system, we can visualise the central role of communication between different systems. A device must be able to speak with the various pieces of software through the platform to make gathered data intelligible and valuable. For example, in the case of TeNDER, the web application, which processes and charts information for health professionals and other users, must be able to communicate with the devices that gather the data the charts are based on about their sleep and daily activities.
Because of the sensitive medical data specific systems gather and feed, a robust policy framework must be in place to protect people’s privacy and prevent abuse. In TeNDER, our technical partners, such as Ubiwhere, work to ease the communication between the devices, digital services, and networks within the project’s integrated care system. In the meantime, end-user partners and legal scholars work to ensure that all this happens within a solid legal and ethical framework backed by EU and national laws and regulations.
Throughout the world, highly advanced wearables and sensor devices are being used on a daily basis. Advancements in the field of science and technology give rise to more effective tools for disease prevention and recovery.
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The Parkinson Madrid Association (APM) is a non-profit organisation whose main mission is to improve the quality of life of people affected by Parkinson’s disease and their families. It was founded in 1994 and declared a Public Utility Entity by the Ministry of the Interior in 2001. The Madrid Parkinson’s Association currently has 2000 members, 130 volunteers and 58 workers.
In an interview with Ms Jennifer Jiménez Ramos, who is a Project Manager at APM and a TeNDER partner, PlatformUptake.eu discussed the role of digital technologies and open platforms for the improvement of quality of life of older people affected by Parkinson’s disease.
On the question of how important the technological support for older people and carers from the organisation’s perspective is, the interviewee stated that the current global health situation has brought to the forefront the usefulness of new technologies regarding the provision of care and paying attention to the needs of older people. Ms Ramos continued by explaining that a pandemic does not need to be present for this to happen. The older people often have difficulties in getting around, due to their own health problems, to the absence of people who can accompany them, or to the place where they live. For this reason, new technologies provide their carers and family members with a great opportunity to get closer to them and provide them with quality services and security in their daily lives.
Next, Ms Ramos was asked if APM has used or developed open platforms or AAL/AHA solutions to support older people, family carers, and care professionals. And if so, she was asked to provide some examples. According to the interviewee the Parkinson Madrid Association has already participated in several projects aimed at creating integrated care systems with the monitoring of patients’ symptoms and activity and creating a communication network between the different actors involved. Thus, the initiatives sought to promote the interrelation between patients, carers, and professionals and increase patients’ autonomy and quality of life. Moreover, as a result of the projects caregivers can feel calmer and relieved of the guilt that often derived from leaving their loved ones alone. Professionals also benefit from the developed systems by having objective, real-time data on their patients’ symptomatology and activity.
Finally, the interviewee was asked to highlight some important aspects of the APMs work. Ms Ramos explained that during the COVID-19 crisis, the association has developed a new project to provide streaming rehabilitation for everyone. The sessions are open through the association’s website using a live Youtube channel. In addition, APM has launched its own application for remote therapies, enabling older people to receive their treatment both individually and in groups.
According to Ms Ramos the specialisation of the professionals at the Association make it an ideal place for students from different disciplines to train, not only in their specific area of studies but also within the provided service model. Additional courses, workshops, and conferences are held by ATM for caregivers and those who are affected by Parkinson’s disease. Every year the organisation carries out 2 major general awareness events, International Parkinson’s Day, and its own campaign in Madrid – “Music for Parkinson’s.”
To conclude the interview Ms Ramos explained that APM promotes innovation in all the therapy disciplines. The organisation offers and frequently expands its services in the search for the latest treatment trends. For example, it has added activities such as Pilates or Taichi to its catalogue of services. It has also acquired virtual reality equipment to include in its sessions.
Telemedicine has shown tremendous growth around the world recently, and the COVID-19 pandemic has only spurred an increase in the number of people who utilise telehealth services.
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TeNDER has published two public deliverables on data protection and on the project’s monitoring services.
Deliverable 1.1 lays out the main requirements with regard to fundamental rights for data protection and privacy. From day one, the project has ensured that data protection, ethics, and privacy law are embedded in TeNDER’s integrated care system. This deliverable will be followed by further reports at different stages of the development, implementation, and monitoring of the project.
Deliverable 2.2 is a preliminary analysis of the needs and gaps of Integrated Health Care Service Provision from the point of view of TeNDER use cases. Project partners have worked together to define and validate the suite of TeNDER service provision.
Both deliverables exemplify the consortium’s commitment to rigorous research methods, ethical standards, and data protection guidelines. Throughout the life of the project, you will be able to find a selection of the project’s public deliverables as they become available here.
Last year (2020), the World Health Organization’s (WHO) Global Cooperation on Assistive Technology (GATE) launched the Digital and Assistive Technologies for Ageing (DATA) initiative to encourage the global development, synthesis, and use of affordable, quality, digital and assistive technologies to cope with the challenges brought on by ageing.
To explore the wealth of research carried out internationally on digital and assistive technologies for ageing, WHO DATA, in collaboration with the EU’s Health & Care cluster, organised a first webinar on 21 May 2021. The online event brought together ten large-scale pilot projects funded by the European Commission, to show how digital and assistive technologies can be used together to enhance smart and healthy ageing in communities across diverse European contexts.
Researchers and digital experts shared their experience in long term co-design in ageing and large-scale digital health projects. TeNDER, for example, provided input based on our experience developing and implementing meaningful collaboration processes.
Throughout the webinar, speakers underscored the importance of the human component in designing, deploying, and assessing assistive technologies and digital solutions. The presentations shared the vision of research and innovation in the field of health and care and highlighted practical steps to obtain real commitment from decision-makers in the process.
Recent examples of pilots amidst COVID-led restrictions showed the relevance of interoperable technologies to provide tailored and timely solutions to users. Informed discussions were held on technical choices around key performance indicators, service sustainability, services’ innovation, users’ personas and piloting methodologies.
WHO work on digital and assistive technologies
The WHO launched the Digital and Assistive Technologies for Ageing (DATA) to encourage the development of and promote access to assistive technologies for people with impairment or decline in physical or mental capacity, with a particular focus on older people.
Within WHO, DATA brings together perspectives from a number of different departments; including Ageing and Life Course, Digital Health and Innovation, Health Systems and Service Provision, and Health Products, and Policy and Standards.
Working with service providers and users, industry, and civil society, DATA will span boundaries to produce more integrated and cohesive services for older people. If you are interested in exchanging information, sharing knowledge on latest research and contribute to discussion around enabling environment on digital and emerging assistive technologies for ageing we invite you to join the DATA community. The initiative builds on the successful WHO Global Cooperation on Assistive Technology (GATE) and healthy ageing initiatives, and similarly will be applicable low-income, middle-income, and high-income contexts.
EU work on digital and assistive technologies
The Health & Care Cluster gathers ten Large-Scale Pilot projects financed by the European Programme for Research and Innovation, Horizon 2020. The cluster counts 5 working groups focused on Dissemination, Architecture, Use Cases, KPIs (Key Performance Indicators) and GDPR (General Data Protection Regulation). The Health & Care Cluster projects are framed within the OPEN DEI Innovation Action aligning reference architectures, open platforms and large-scale pilots in Digitising European Industry.
Explore the large-scale pilot projects in the Health & Care Cluster:
Tender: affecTive basEd iNtegrateD carE for betteR Quality of Life
Activage: Internet of Things for ageing well
Adlife: integrated personalised care for advanced chronic patients
GateKeeper: Smart data driven solutions for personalized early risk detection and intervention
InteropEHRate: HER in people’s hand across Europe
Pharaon: pilots for active and healthy ageing
Shapes: Smart & Healthy Ageing through People Engaging in Supportive Systems
Smart4Health: Citizen-centred EU-HER exchange for personalized health
The first wave of TeNDER pilots will end soon. During the next few months, our user, technical, and research partners will consolidate the data gathered from the five different pilot sites. The results will be analysed and adjustments will be made in time for this fall (2021) when the second wave will commence. They will also consult participants to ensure that the next iteration integrates their feedback, as well as to capture improvements in quality of life.
Thanks to careful planning, user consultations, as well as the timely implementation of contingency plans to mitigate the impact of COVID-19 restrictions, partners were able to build trust in the system, ensure it is fit to address the needs of users, and conduct the pilots safely.
To date, 125 participants have been recruited across the Madrid region (Asociación Parkinson Madrid and Servicio Madrileño de Salud), Bad Aibling (Schön Klinik), Ljubljana (Spominčica – Alzheimer Slovenija), and Rome (University of Rome – Tor Vergata). Participants include patients with cardiovascular diseases (CVDs), dementia, and Parkinson’s disease (PD), as well as caregivers, and health professionals. By the end of the project, we will have reached an estimated 1,500 users. We will also have tested the full range of the TeNDER technological toolbox and the system’s services.
Our ultimate aim is to empower users, allowing patients to track and manage their health, social environment, treatment, and medical appointments for as long as they can. For those whose conditions have limited their day-to-day functions, we hope that the TeNDER system will help extend their independence, support their daily activities with necessary reminders and suggestions, and keep them safe by monitoring mental and physical health markers.
TeNDER’s assistive system is designed to provide support, not replace people’s personal connections. While a key goal is to ease the burden of care placed on those who surround patients, this is so that all users can have more time to nourish their relationships, engage in activities that are mentally and physically beneficial, and markedly improve people’s quality of life.
Testing the technological toolbox
During the first wave, patients (with CVDs, dementia, or PD) at the Schön Klinik – Bad Aibling (SKBA) hospital and its Alzheimer’s therapy center, have been testing the Fitbit smartwatches and the Withings Sleep-Analyser.
Researchers have been able to visualise each patient’s heart rate, steps, and sleep quality – including the detection of abnormal sleep patterns – using the Fitbit and Withings apps on smartphones, which will soon also be available on the TeNDER-App.
For its part, Asociación Parkinson Madrid (APM) has naturally focused on patients with PD with plans to include caregivers and health professionals. APM is conducting their pilots in the rehabilitation room scenario, involving the use of the Kinect camera and smartwatches. Pending the further relaxation of COVID-19 restrictions in Madrid, APM may be able to test other devices in home environments.
In daily therapy sessions, some patients wear smartwatches and perform routine exercises that the Kinect camera captures and analyses.
Also in Madrid, the Servicio Madrileño de Salud (SERMAS) has been testing the smartphone application and recording basic vitals. It has been working with different types of patients, caregivers, and primary care physicians and nurses. Uniquely, SERMAS is working closely with engineers at the Polytechnic University of Madrid (UPM) to train the algorithms and optimise our data collection.
In Rome, our partners at the University of Rome – Tor Vergata (UNITOV) are recording basic vitals and testing some of TeNDER’s smartphone-integrated services together with patients with dementia and PD, as well as their caregivers and doctors.
Similar to APM in Madrid, UNITOV is waiting for further easing of COVID-19 restrictions to install and test further devices in home environments. In addition to wearables and smartphones, these devices will also include sleep sensors, mini-PCs, and Kinect cameras.
Finally, in Ljubljana, our partners at Spominčica – Alzheimer Slovenija (SPO) have been working with patients with dementia, their family members, and caregivers in their home environments.
Users are testing the smartwatch together with localisation sensors, sleep-analysers, and microphones that can capture general emotional reports in the environment, which are locally processed in the TeNDER system.
SPO is also conducting detailed consultations with professionals and patients, and is integrating their feedback into the system reports. These reports not only feed into the data that trains the algorithms, but they also provide invaluable input that helps us improve the system and its interfaces. User experiences, opinions, and suggestions are key to making TeNDER services person-centered and fit to help address user needs.
Initial reception
Throughout the first wave, patients, caregivers, and health and social care professionals have shown great interest in several services. SKBA reports that the latter group has found the sleep analyser especially helpful, particularly in detecting signs of unknown sleep apnoea.
When using the smartwatch, patients have reported that they are more motivated to stay physically active, proudly referring to the number of steps they are taking every day.
We have also seen the benefits of the work user partners put into meaningfully involving users from the start of the project. SERMAS, for example, has held training sessions with professionals in different primary care centres in Madrid. While SPO held several focus group meetings early on in the pre-piloting phase. These efforts have given us great insight into people’s perceptions regarding assistive technology, as well as user expectations.
The collaboration process, together with TeNDER’s rigorous adherence to data and privacy protection guidelines, has helped build trust amongst current and potential users. Thanks to this, patients who have participated in the projects have expressed general satisfaction and great interest in what comes next as the system is improved and its benefits extended.
At TeNDER we will continue to strive to preserve the sentiment recently expressed by a participant in Madrid: “I am very proud to be able to participate in something that will be the future.”
