Knowledge exchange and collaboration

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.

Partners present at Alzheimer Europe’s virtual #30AEC

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.

Gustavo Hernández Peñaloza from UPM presents ICT4Life and TeNDER at Digital EU webinar

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.

 

World Alzheimer’s Day

21 September is World Alzheimer’s Day. On a so-called ‘normal’ year, people around the world would mark the occasion with a ‘Memory Walk’. Every year, the walk brings together people with dementia, their family members, friends, and those who work to improve their quality of life. This year, however, most activities across the world will adapt to the new reality of COVID-19.

 

 

Despite the adjustments, the online ‘gathering’s’ aims remain the same: to help raise awareness and funds for research, public health policy advocates, and the organisations that support patients and their families. Not to mention that it is more important than ever to share the message that they are not alone!

TeNDER seeks to extend the independence of people with chronic illnesses such as Alzheimer’s and improve the quality of life of patients and those who surround them. As a newly formed consortium of experienced partners, we join global efforts to raise awareness and promote research year-round.

We have also compiled resources in English about:

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Supporting patients’ quality of life with assistive technology

The European Union’s Framework for Research and Innovation (Horizon 2020) funds projects that not only meet rigorous research standards, but also strive to address societal challenges. Each of these projects include partners from diverse sectors and hail from different disciplines. For example, they range from the social sciences and humanities to the medical sciences.

TeNDER and FAITH both fall under the latter category. For the next three years, they will pilot assistive technologies supporting the quality of life of different types of patients.

TeNDER: an integrated care model to manage multi-morbidity

TeNDER will pilot an integrated care approach for people affected by Parkinson’s disease, Alzheimer’s (and other forms of dementia), and cardiovascular disease. Using familiar and accessible tools and applications, TeNDER will help patients stay connected and feel safe in their environments. For example, health bands that monitor vitals and affective recognition software will alert a patient’s health and social care system to potential or ongoing health crises.

Other services will assist patients in their day-to-day lives. This may mean, for example, helping them connect to local pharmacies, to cleaning and food delivery services, and so on. TeNDER does not replace patients’ contact with those who surround them. Rather, it helps link their environment to support their independence.

FAITH: intelligent post-cancer support with Artificial Intelligence

Harnessing the potential of Artificial Intelligence, FAITH will develop and pilot an application that identifies and analyses depression markers in people that have undergone cancer treatment. The project’s primary goal is to help patients be more aware of their mental health situation. This allows them the possibility to improve their quality of life.

FAITH will collect and monitor a range of health indicators. By analysing them, FAITH can infer information about the mental status of a person in a non-intrusive way. However, it does not aim to replace clinicians at all. Rather, it works in support of clinicians, providing them an additional tool for their practice.

Supporting quality of life

Over the course of three years, TeNDER and FAITH will work to support the quality of life of different types of patients in diverse settings. Both consortia also aim to make their approaches fit for widespread implementation. This way, they can benefit patients beyond the scope of the projects. We look forward to collaborating throughout this undertaking to amplify our voices and support each other’s aims for the benefit and health of patients throughout the EU.

Spominčica – Alzheimer Slovenia holds first focus group meeting

TeNDER partner, Spominčica – Alzheimer Slovenia (SPO), held their first focus group meeting with health and social care professionals, and caregivers.

SPO introduced the project, its goals, and details about the services that TeNDER’s integrated care model will provide. Following the initial presentation, participants discussed the upcoming TeNDER pilots in Slovenia, which will be tailored to people with mild cognitive impairments, Alzheimer’s disease, and other forms of dementia.

Participants noted our emphasis on co-creation to be amongst the project’s strong points.  Indeed, TeNDER’s clinical partners frequently underscore the importance of including users in the development and design of solutions to help ensure usability and a person-centred approach.

During the discussions, however, participants expressed concerns regarding the risk of intelligent support systems replacing the services provided by formal caregivers. They stressed the importance of personal contact and face-to-face interactions, and that these should always remain central to care provision. Partners are mindful of this and emphasise that TeNDER’s integrated care approach does not seek to replace personal connections or formal care, but to support patients and those who surround them. 

The feedback TeNDER partners receive from users is essential in the preparation, implementation, and the concluding phases of large-scale pilot projects. Focus group meetings are but one way in which TeNDER will reach out to and work with users during the life of the project.

TeNDER partners to participate in 30th Alzheimer’s conference

TeNDER is pleased to announce that its partners will participate in the 30th Alzheimer Europe Conference (20 to 22 October 2020), which is set to go virtual due to the continuing pandemic.

David Krivec from Spominčica – Alzheimer Slovenija will present partners’ joint paper titled “Co-creation of the intelligent support system with patients.” In this paper, the authors underscore the importance of establishing ways for patients, carers, and professionals to co-design care approaches and services. Such opportunities for collaboration also strengthen communication between health and social care professionals, as well as help extend the independence of patients.

Under the motto: “Dementia in a changing world,” this year’s conference aims to provide a meeting point for people with dementia, those who care for them, Alzheimer’s associations, policymakers, health and social professionals, researchers, and industry representatives from across Europe and beyond.

Restrictions gradually lifting

Image created by Ruth Burrows. Submitted for United Nations Global Call Out To Creatives - help stop the spread of COVID-19.

As restrictions lift across Europe and other parts of the world, it is vital to continue observing certain safety measures and avoiding misinformation.

The World Health Organization, the European Centre for Disease Control, and European national ministries are all good sources; they are up-to-date and provide evidence-based information.

In addition, keep the following tips in mind and apply them to your national, regional, local contexts – reliance on algorithms should never be the only line of defense against misinformation.

Several TeNDER partners have dedicated sections to COVID-19, which are informed by internationally set guidelines like the ones listed above. Several of the links shared below provide material tailored to specific vulnerable groups, such as elderly patients with co-occurring chronic illnesses.

SPOMINČICA – ALZHEIMER SLOVENIJASlovenian and English

SALUD MADRIDSpanish

ASOCIACIÓN PARKINSON MADRIDSpanish

SCHÖN KLINIK – BAD AIBLINGGerman

UNIVERSITÀ DEGLI STUDI DI ROMA – TOR VERGATAItalian

HOPE – EUROPEAN HOSPITAL AND HEALTHCARE FEDERATION – English

TeNDER joins COVID-19 security research initiative

TeNDER has joined the Security Research Rapid Response to COVID19 (Sec3R) initiative. Sec3R gathers the expertise of various organisations, institutions, and projects to provide a knowledge platform for public authorities, emergency services, and researchers, among others.

The platform assembles trustworthy and free-to-use resources from within the security research community. These include tools that help secure communications, as well as others that combat growing misinformation surrounding the current pandemic.

In addition, Sec3R will bring together research, datasets, and information on COVID-19, cybersecurity, and other related subjects. Consult the website regularly to access continuously updated resources.

World Parkinson’s Day during COVID-19 outbreak

In 2016, The Lancet’s “Global Burden of Disease” report estimated that 6.1 million people were affected by Parkinson’s disease worldwide, with the number set to double by 2050.

Parkinson’s symptoms gradually develop as cells in a specific part of the brain are affected in ways that impact movement. Researchers across the world work on different dimensions of the disease: from seeking to understand the course of the disease and its possible triggers and predisposing factors, to developing treatments. In the realm of care, projects like TeNDER are working to extend the autonomy of patients with Parkinson’s disease, among others.

Every 11 April – on the anniversary of James Parkinson’s birthday, the physician who first identified the disease in 1817 – people worldwide coordinate to raise awareness of the condition and the social, economic and psychological impact it has on individuals and communities. However, efforts to rally support for patients, as well as for research and access to care, happen year-round. There are local, regional, national and global organisations anyone can reach out to for support.

This year, in the context of COVID-19, many awareness-raising campaigns will take place only online. And in addition to these, groups and organisations have mobilised to provide valuable information for patients with Parkinson’s disease and those who surround them. TeNDER consortium partner Asociación Parkinson Madrid (Madrid Parkinson Association), has adapted guidelines in Spanish for those affected; and the European Parkinson’s Disease Association has also gathered important resources in English.