But for every problem, usually, there is a solution. And technology often can be part of the answer. Enter the era of assisted living.Continue reading
Here, we will focus on the specific ICT-based interventions designed to detect falls. The TeNDER system uses devices equipped with sensors to monitor and support the physical status of older adults.Continue reading
Quality of Life (QoL) is an important concept widely used in medicine, sociology, and psychology. The World Health Organization (WHO) defines QoL as an “individual’s perception of his or her position in life in the context of the culture and value system where they live, and in relation to their goals, expectations, standards and concerns’’.Continue reading
After careful preparations, TeNDER is ready for 2021 and the first wave of pilots. During the pre-piloting phase, consortium partners laid out the legal and ethical framework of the project, defined the technical architecture of the services TeNDER will provide, consolidated the system for gathering data and analysing results, and consulted future users, among other things.
In addition, we developed use case scenarios, stories that reflect real-life situations and help us conceptualise how users will interact with our tools. To complement this exercise – and despite the difficulties the COVID-19 pandemic posed – we safely reached patients, carers, and professionals to reflect on the technology and TeNDER tools.
TeNDER partners in Germany, Italy, Slovenia, and Spain conducted nearly 200 surveys and 61 interviews with patients, caregivers, and medical and social professionals. The results gave us invaluable insight into the ways the TeNDER system will be used on the ground:
“I would like to have more autonomy. And that when I communicate with people, they understand
all that I want to say.” (patient with Parkinson’s Disease)
“Some days, when I returned from work, I found her on the floor and she couldn’t explain what had happened. It would be very useful to know what happens [while I’m gone] and to be alerted if she has fallen.”
(caregiver of a patient with dementia)
“It would be nice if you could also encourage patients to exercise regularly, and monitor their vital signs, too. As a physician, I would benefit from reading the reports before seeing the patient.” (neurologist)
The importance of the pre-piloting phase
During this preparation phase, we not only identified what patients, caregivers, and other participants need, but we also worked with TeNDER’s technical partners to ensure their input is integrated into the system design. Furthermore, we translated complex procedures into less technical terms.
Careful preparation helps projects like TeNDER stick to timelines, reduce failure rates, and above all, achieve societal impact for the benefit of patients and those who surround them.
What comes next?
TeNDER pilots will take place in three waves all the way through to end of 2022. Results, publications, updates, and analyses will be made available on our website and other platforms throughout the duration of the project.
On 30 October, several EU-funded initiatives participated in an online workshop organised within the general framework of the Sustainable Places Conference 2020. The workshop, titled “Sustainable Housing Supporting Health and Wellbeing,” centred on the benefits of and the ways to create living spaces fit for all walks of life.
Among a broad range of innovative projects and therefore participants with various backgrounds, Annelore Hermann (Universidad Politécnica de Madrid) presented TeNDER and how it fosters independent living, particularly in old age.
Each project is developing tools, policy recommendations, and services that contribute to sustainable housing and other living environments. This entails, for example, creating age-friendly home certification models (Homes4Life), as well as TeNDER’s own integrated care system.
Other initiatives are focusing on policy and strengthening the links between various stakeholder groups that have a strong impact on healthy ageing and wellbeing (SHAFE). Linked to these policy goals is the work of researchers and other stakeholders seeking to support the creation of age-friendly communities, integrated health, etc. (NET4AGE-FRIENDLY). Meanwhile, AGE’IN and SmartWork aim to improve access to living and working environments that help extend the independence of ageing populations.
The ongoing pandemic has put a spotlight on the needs of people and communities over the course of time. What all the projects and the people behind them have in common, is that they strive for more safety, more independence, more sustainability, and above all: less isolation.
One way to facilitate knowledge exchange, which may benefit researchers and users beyond project years, is to collaborate with projects and organisations that address similar societal challenges.
While TeNDER’s integrated care model focuses on people affected by Alzheimer’s, Parkinson’s, and cardiovascular diseases, the results of the project and its assistive technology system may contribute to the development of alternatives for other types of patients.
Fundación Querer uses the benefits of ICT-based technology to support children and adolescents affected by neurological disorders. Founded in 2016, the organisation offers educational resources and conducts research and awareness-raising campaigns.
El cole de Celia y Pepe
One of Fundación Querer’s core educational projects is El cole de Celia y Pepe, a school that supports students with severe language and communication difficulties that stem from neurological disorders. The programme runs for 11 months in Madrid. It offers individualised attention, involves parents, and aims to develop greater autonomy in students.
Recently, Fundación Querer partnered with the Grammar & Cognition lab, led by Dr. Wolfram Hinzen (Pompeu Fabra University), to research language disorders. The study will map language disorders in relation to cognition.
Their method combines the (1) elaboration of a comprehensive behavioural profile; and (2) a Magnetic Resonance Imaging (MRI) component. The aim is to “profile language behaviorally across the different populations available in this school and study [the] connections and disconnections between linguistic and non-linguistic cognitive profiles that can feed into new educational approaches and tests.”
Adapting to support students
During the COVID-19 pandemic, El cole de Celia y Pepe has not only continued to support its students, but it has also created online access to resources for children with special needs across the world.
Both TeNDER and Fundación Querer demonstrate how ICT-based tools and digital technologies, when done right, can help all walks of life.
The focus needs to shift to slowing down the progression of a disease and making the best out of the situation in such a way that enables people to be as healthy as possible, and in turn, live the best life possible.Continue reading
Even as contradictory ‘facts’ circulate, all sides of recent debates assure us that they appeal to truth and fact. Each side accuses the other of being misinformed and spreading misinformation. These words are not misunderstood; indeed, a vague agreement of their meaning exists amongst all users.Continue reading
From 20 to 22 October 2020, Alzheimer Europe hosted its 30th conference online (due to COVID-19 restrictions).
David Krivec (Spominčica – Alzheimer Slovenija) and Gustavo Hernández-Peñaloza (Universidad Politécnica de Madrid) presented a paper on TeNDER’s approach to system co-creation with patients, carers, and professionals.
The development of this approach and the subsequent conference paper are the product of months’ work and collaboration between several partners, including: Spominčica – Alzheimer Slovenija, Universidad Politécnica de Madrid, Schön Klinik – Bad Aibling, the Servicio Madrileño de Salud, Asociación Párkinson Madrid, Università di Roma – Tor Vergata, and the Centre for Research and Technology – HELLAS.
What entails co-creation?
The very concept of system co-creation already hints at its main goal, which in TeNDER is to include all participants (patients, families, caregivers, and professionals) in all stages of the development of an innovative ICT-supported integrated care solution.
By engaging in this process, TeNDER helps ensure that our tools to detect emotions and mood changes are fit-for-purpose and will genuinely contribute to an ecosystem that supports users’ quality of life. The tools that will be deployed in each pilot setting will be adapted to the needs of each participant.
Participant involvement at different stages in the project will also help us build trust and empower users. TeNDER’s approach to integrated care is, after all and above all, person-centred.
Preliminary pilots are set to launch soon with a cohort of people affected by Alzheimer’s and other forms of dementia, as well as people with Parkinson’s disease, and Cardiovascular disease. To receive progress updates and other information please subscribe to our newsletter (scroll to bottom of page and enter e-mail) and/or follow us on Twitter and LinkedIn.
From 5 to 6 October 2020, the European Patients’ Forum and DigitalHealthEurope co-organised an online workshop on “Digital Tools for Patient Empowerment and Patient-Centred Care.”
Gustavo Hernández Peñaloza, a researcher at Universidad Politécnica de Madrid (UPM), presented ICT4Life’s study findings and introduced TeNDER. ICT4Life, which ended in 2018, was funded by Horizon 2020 (H2020), the same research and innovation programme that funds TeNDER.
Answering to societal needs
Horizon 2020 is an ambitious framework programme to fund European research and innovation. During seven-year cycles, H2020 covers everything from fundamental research to the no less important societally driven approach to research.
ICT4Life is an example of the latter approach. As a result of ageing, the number of Europeans affected by Alzheimer’s (and other forms of dementia), and Parkinson’s disease has steadily risen over the decades.
According to the WHO in a 2018 report on dementia, it represents one of the biggest global public health challenges. People living with dementia (including Alzheimer’s) worldwide today is estimated at 44 million, and will likely double by 2030. The prevalence of Parkinson’s disease is also set to rise, according to the European Brain Council, with more than 1.2 million patients currently living in Europe.
ICT4Life aimed to develop user-friendly tools that empower people living with these conditions, help them extend their autonomy, and generate a sense of safety.
The ICT4Life platform gathered a set of innovative digital solutions such as active multi-sensorial monitoring and tracking, communication services, active training and stimulus, recommendations, reporting services, and social services in an integrated healthcare approach. Intended for patients, formal and informal carers, and health professionals, all solutions were developed following a user-centred methodology and tested in real-life scenarios.
From ICT4Life to TeNDER
ICT4Life integrated a high-level subsystem that translates data into something understandable and useful for the users (patients, carers, healthcare professionals, etc.). Monitoring and alert systems will allow patients and those who care for them to feel safe at home.
The system was tested with approximately 200 patients in Madrid, Paris, and Pécs. The tests focused on user acceptance and user interaction.
Throughout the course of ICT4Life researchers remained very alert to ethical, legal, and privacy considerations. They needed to be sure that they were communicating properly and that the large amount of data that was gathered – which is crucial scientifically speaking – was protected and processed properly. Due to the large-scale character of TeNDER, an entire team will be dedicated to ensuring the protection of patient data.
The results of the ICT4Life tool development process and small-scale testing indicated that the system can safely extend patients’ autonomy. This prompted some of the project partners to form a larger consortium to extend piloting capabilities, build on the project’s successes, and strengthen the weaknesses of ICT4Life.
TeNDER will therefore perform large-scale pilots on about 1500 users in Madrid (Spain), Rome (Italy), Ljubljana (Slovenia), and Bavaria (Germany) using the tools developed by ICT4Life. It will also integrate new tools, as well as a new study group comprising people affected by cardiovascular disease.