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.

Taking it one step further – Empowering people with technology-based systems

We’ve all been there, when feeling sick the highest aim is to get well again, preferably as soon as possible. However, this isn’t something that is within reach for everybody, especially not for people with chronic diseases, like Alzheimer’s, Parkinson’s, or cardiovascular diseases. Due to the progressive development of such conditions, returning to a status quo is unfortunately out of reach.

Therefore, 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.

This is in accordance with the concept of Health promotion, which was defined by the World Health Organization (WHO) in 1986 in the first conference of Health Promotion in Ottawa. Thus, health promotion is “the process of enabling people to increase control over, and to improve, their health” (World Health Organization, 1986). Concrete strategies were published afterwards in the Ottawa Charter for Health Promotion and now serve as the foundation for the “Health for All” strategy of the WHO.

One of the basic tenets of health promotion is to enable people “to achieve their fullest health potential,” in other words, to put people in a position where they can control and can stand up for their own health. This way, people are not only passive recipients of health care, rather, they can advocate for themselves and, in a wider sense, make the best out of the situation. Having a “supportive environment, access to information, life skills and opportunities for making healthy choices,” were identified as ways to reach this goal.

Similarly, the concept of empowerment builds on the concept of enabling. According to the WHO, empowerment is “a process through which people gain greater control over decisions and actions affecting their health” (World Health Organization. Division of Health Promotion & Communication, 1998). Conditions should allow people directly to influence their health through actions – individually and as a group.

In the age of digitalisation, more and more technologies are being developed to support people in their daily lives. Ranging from simple communication tools to activity trackers or sophisticated monitoring devices, technology offers a wide spectrum of implementation possibilities. Whereby some tools are developed primarily for enjoyment, as, for example, game applications, while others offer solutions to problems in daily living and aim to increase individual control over actions.

Said solutions are also targeted by the European project “TeNDER” (affecTive basEd iNtegrateD carE for betteR Quality of Life), which is currently running in the EU-funded Horizon 2020 programme. During the project, a technological, sensor-based system is being developed aiming to increase the autonomy of the user and thus also leading to an increased quality of life.

By giving the users possibilities to have control over their daily activities, TeNDER empowers them in various aspects. Therefore, users can manage their medication intake alone or schedule dates (medical or personal) with a Virtual Assistant and a Calendar-Function, which is especially important for users with memory impairment. Furthermore, users can track their activity with respective tools, or monitor their vital signs, like blood pressure or heart rate, and check their quality of sleep.

Moreover, with the linkage of various health sectors and services in the sense of integrated care, the TeNDER system connects patients with their respective physicians and carers. This way, more relevant information can be provided to make planned visits more efficient.

All in all, technology-based systems offer the user the means to lead a more independent and autonomous lifestyle despite the presence of disease, and empower him or her to take action in controlling their own health.

References

World Health Organization. (1986). The Ottawa Charter for Health Promotion.   Retrieved from http://www.who.int/healthpromotion/conferences/previous/ottawa/en/index.html

World Health Organization. Division of Health Promotion, E., & Communication. (1998). Health promotion glossary. Geneva: World Health Organization.

Communicating research

Photo by NASA on Unsplash

First, we need to reinforce, raise awareness of and spread the well-established principles that govern what constitutes a valid intellectual contribution. Practices such as peer review, competitive process for funding research, requirements to publish data, and transparency about conflicts of interest are fundamental to academic life. Most people are unaware of these practices, which are the bedrocks of academic quality and progress […]

                                                                                                                                          – Nemat Shafik, Times Higher Education (2017)

What’s in a fact?

Across the world, the terms ‘post-truth’ and ‘post-fact’ proliferate daily in connection to politics, science, and of course, COVID-19. If we are to believe the headlines, we live in a world where facts and expertise no longer shape realities, public discourse, or political decisions.

However, 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.

Instead of implying that we’ve surpassed truth and fact, time and publication space may be better spent reminding us what it takes to build a fact. The methodologies may differ in each discipline, but a common principle runs through each process: the need for robust evidence.

For some, facts are observed and intuited, for others, they are supported by studies, experts, and institutions, and for many still, facts are the product of scientific consensus. However, as Nemat Shafik, Director of the London School of Economics, stated in 2017: it takes much more than one element to build a fact.

Communicating research

Good researchers are not only curious and knowledgeable, but they also take time to learn, innovate, and apply the methods that help frame each discipline, and they adhere to strict ethical standards.

Today, researchers are also tasked with communicating their work to ensure people’s trust in science. This is an important endeavour and it is a responsibility that extends beyond academia. It lies with politicians, news media, and primary education (to name a few).

As John Oliver points out, however, not all scientific studies out there are created equal. Some (often retracted for shoddy methodologies) seek to legitimise deplorable and potentially dangerous beliefs about race, vaccinations, gender, etc.  Others are financed by industries for lobbying purposes. Still others are the product of unethical behaviour.

Algorithms may help weed out inaccuracies on social media, but this is a passive way of countering misinformation. The practice of communicating the basic tenets of good research empowers people and helps develop curiosity, as well as the skills to assess the strength of a fact.

Therefore, it is important to communicate not only what researchers do, but how they do it. How they build the robustness of a fact. Good science takes time, it’s founded on previous knowledge and uses different types of data, in many fields it must be reproducible, it should be peer-reviewed, it builds consensus, it accepts its limitations, and it is transparent about its methods and procedures.

We cannot be experts in everything, but understanding what makes “a valid intellectual contribution,” can help us discern between facts and information that disguises itself as fact.

The responsibility of projects like TeNDER

In TeNDER, user consent entails informed consent. Pilot participants will know exactly what types of tools will be used to assess their physical and mental health, how the data they generate will be processed, and how it will be protected.

Our user partners have passed rigorous ethical committee assessments and will be there to explain each tool and support all participants with the help of the technical partners.

The project consortium has also developed a model for co-creation with target users to ensure trust and that the tools are fit-for-purpose.

Like all Horizon 2020 projects, TeNDER is committed to the principles of open access. The consortium will widely disseminate results and submit periodical progress reports.

We will communicate throughout the project duration and hopefully beyond. As the preliminary pilots are set to launch soon with a cohort of people affected by Alzheimer’s and other forms of dementia, Parkinson’s disease, and Cardiovascular disease, we look forward to sharing this project journey with you.

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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.