Federica Asquini – Tender Health

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:

World Alzheimer’s Month Events, toolkits and materials to join the campaign (updated yearly);
national and local organisations;
information and statistics about dementia;
and research updates from academic journals like Nature and The Lancet, as well as popular science publications like Scientific American.

If you want to receive updates about TeNDER’s progress, sign up to our bi-annual newsletter by scrolling down to bottom on our website and entering your e-mail address.

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.

Adapting to a new reality: The experience of Asociación Parkinson Madrid

There is no doubt that the global pandemic caused by COVID-19 has impacted all sectors of society and the population as a whole. In this article, we will focus on the impact that it has had (and continues to have) on people affected by Parkinson’s disease and share the strategies Asociación Parkinson Madrid developed during the lockdown in order to alleviate this situation.

Parkinson’s disease is neurodegenerative and chronic. Today, there is no cure, therefore, treatment seeks to counteract symptoms with both medication and therapies with the aim of keeping the person autonomous for as long as possible and improving their quality of life. Both treatments, pharmacological and therapeutic, are essential for people with Parkinson’s.

The general lockdown that countries in Europe experienced led entities, such as Asociación Parkinson Madrid (APM), to implement telework solutions and teletherapies so that people affected by the disease could continue their treatment.

On 11 March, APM had to close its doors due to the deteriorating situation. At that time there were more than 600 patients following their rehabilitation at our centres and with home assistance. All APM professionals were teleworking by the end of March. We called patients to learn more about their needs and concerns, and to evaluate the impact COVID-19 and the lockdown measures were having on them.

Asociación Parkinson Madrid therapist Jessica Jiménez Cruz

Professionals were concerned about their patients’ therapies because it is known that long periods of inactivity can worsen symptoms. So, it was important that, given the impossibility of providing therapies at home and in APM centres, those affected by Parkinson’s disease could continue their therapies at home.

In this context, APM started providing physiotherapy, speech therapy, and psychological care, using new technologies, allowing us to maintain contact with patients. Although everything changed very quickly, APM’s response unfolded in stages.

At first, APM used social networks such as Twitter, LinkedIn, and Facebook to share exercise infographics. This enabled patients to follow therapeutic instructions. However, the lack of personal contact sometimes made it difficult to follow the steps laid out in the infographics. Sometimes patients phoned the association to request further explanations, sharing their difficulties in carrying out some of the exercises. Dealing with this aspect over the phone was very difficult for APM therapists.

The next step involved streaming the therapy sessions. The videos with the exercises performed by the therapist were previously recorded. Space and the home conditions were taken into account. The interaction in the YouTube chat was very positive, both between the patients and with the therapists, an aspect that was useful in improving the sessions.

The last step was to develop one-on-one tele-rehabilitation, which allowed patients to choose different rehabilitation sessions and have direct contact with their therapists.

APM therapists Jessica Jiménez Cruz and Rocío Martín Picazo, who were involved in this entire process, shared their experiences, pointing out the most positive aspects and the aspects that need to be improved.

Among the aspects that need to be improved, they both point out that there is still a technological gap in regard to older people’s digital skills. Older patients often turned to their relatives, grandchildren, and caregivers to overcome this difficulty and many learned from them. The gap remains, however.

From the technical point of view there was also an internal learning process, the first videos are of less quality compared to later ones where lighting or positioning were considered. Another issue that arose concerned the lack of interoperability between some of the devices, software, and video formats.

One of the positive aspects of tele-rehabilitation that Jessica Jiménez pointed out, has been that it allows therapists to personalise the sessions; that is, it allows people affected by Parkinson’s disease and their families to use this tele-space with their therapist to fit their specific needs. In addition, this experience has provided a new working model for professionals who until now were not usually considered for telework.

For Asociación Parkinson Madrid, there is no doubt that new technologies are the future and that more and more will be introduced in the field of health. Our next steps will include improving tele-rehabilitation and making it more accessible for a greater number of older people by helping them bridge the technological gap and adapt to a new reality.

Interoperability: defining the future of smart-living systems

People’s needs are continuously changing. Technology, organisations, and cities are always evolving and with this evolution, new social, economic and environmental challenges emerge. Often, communities (e.g., of cities, authorities, managers, etc.) are looking for novel ways of identifying human needs and difficulties, to take rapid and effective actions that improve lives.

This is where smart solutions designed by pioneering high-tech companies like Ubiwhere arise, to completely change the way we look at people’s interactions and behaviours by collecting, digitalising, and analysing data from sensors, platforms, and applications.

Data represents a valuable tool to support decision-making and strategies in diverse contexts. Collecting and correlating data from distinct sources within an environment – a city, building, healthcare facilities, etc. – gives people a holistic view of the communities living, visiting or working in it. Decision-makers and responsible entities can use this information to identify the need for altering certain services or infrastructures to suit people’s needs and expectations.

Ubiwhere, for instance, typically collects urban data (on mobility, environmental conditions, as well as safety and quality of life) to provide city managers and other authorities real-time information about a city’s ecosystem. By drawing indicators on the quality of life of people living or visiting a particular city or building, we help city managers visualise and be conscious of what works and what needs to improve. Our responsibility is to cross-reference the data from a variety of sources and display it in intuitive and customisable dashboards, which give decision-makers valuable insights and help enable coordinated responses.

But in any context, with the purpose of presenting assorted information in a unified, integrated, and understandable way: one must ensure that different devices, platforms, and networks are able to communicate with each other and that the data is open and available for use. Interoperability amongst different systems is thus a determining factor.

But what is interoperability?

Interoperability is, in a very succinct way, “the ability of different systems, devices and applications to exchange and make use of information.”

There are a myriad of useful devices, networks and platforms, but even when there is a high offer of all of these components, if they do not speak the same language, they will not be able to work together and create an efficient smart system.

Interoperability and standardisation are what allow software developers and managers, for instance, to get contextual information from different sources and operate with the purpose of optimising different services collectively. They can manage multiple applications through well-defined interfaces and without being tied to a particular vendor or technology.

Interoperability is decisive when it comes to the success of digital systems for assisted living and healthcare

TeNDER brings together renowned organisations from the healthcare sector, research centres, and companies with vast experience in high-tech development, to create an integrated care model to help manage multi-morbidity in patients with neurodegenerative diseases.

To achieve such an innovative vision, it is essential to design a standard tool able to support interoperability among different systems operating in diverse settings.

Collecting data in a safe manner from different sources in different contexts (through location and environmental sensors, cameras and affective recognition technology, etc.) and cross-referencing it with background information on the patient, will help alert us to changes that could lead to health complications.

Towards more personalised healthcare

The system will store this information as a set of indicators and patterns on the patients’ quality of life under certain conditions. Healthcare professionals will get a holistic view of their patients so they can proactively address specific needs and support the autonomy of those who live independently.

It aims at transforming the way healthcare professionals interact with their patients and with each other.

Projects like TeNDER represent an opportunity to seize the findings and know-how in data orchestration, standardisation, and interoperability and apply in many other contexts to provide truly smart living across all sectors.

We aim at building a standard and interoperable solution that centralises the collection and processing of data from heterogeneous sources and systems in a single platform; and harmonises diverse types of integrations, standards, and protocols with applicability in different communities and, to improve the lives of all people and create a safer, more inclusive and sustainable world.

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

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 SLOVENIJA – Slovenian and English

SALUD MADRID – Spanish

ASOCIACIÓN PARKINSON MADRID – Spanish

SCHÖN KLINIK – BAD AIBLING – German

UNIVERSITÀ DEGLI STUDI DI ROMA – TOR VERGATA – Italian

HOPE – EUROPEAN HOSPITAL AND HEALTHCARE FEDERATION – English

The Protection of Personal Data and Why It Matters

Partners in the TeNDER project are developing an integrated care model to manage co-occurring chronic illnesses in patients with Parkinson’s Disease, as well as Alzheimer’s and other forms of dementia. To create a personalised experience for all users, the TeNDER system will gather personal and medical information from patients, using various technologies including health bands and sensors. Through the development of this system, the project aims to support users through their entire clinical journey and to help improve their quality of life and of those who surround them.

Why is it important to consider data protection?

The concept of data protection stems from the right to privacy. Both are vital, not only to safeguard and promote fundamental rights and values, but also in the exercise of other fundamental rights and freedoms. [1] Nevertheless, they are separate rights. While the right to privacy “consists of a [more] general prohibition on interference,” the right to protection of personal data is generally viewed as a more modern and active right, “putting in place a system of checks and balances to protect individuals whenever their personal data are processed.” [2]

The protection of personal data is considered a fundamental right. The collection and use (or processing) of personal information, including about their health, in a project such as TeNDER might therefore have an effect on the fundamental rights of the research participants and eventual users of the TeNDER system. While acknowledging the importance of protecting privacy and personal data, there can be reasons that justify the processing of personal data. In order to ensure that such processing of personal data respects the fundamental rights of those of whom data is collected, it may only take place under strict compliance with necessary safeguards.

How is the protection of data regulated in the EU?

In addition to a number of European and EU instruments that lay down the right to the protection of personal data, [3] the General Data Protection Regulation (GDPR) is one of the most important sources for data protection in the EU. [4] The GDPR harmonises the rules related to data protection across Europe, while leaving room for Member States to adopt their own (complementary or stricter) national rules in certain areas.

Article 1 sets out the GDPR’s two main objectives, namely i) to protect fundamental rights and freedoms of persons, in particular their right to the protection of personal data, and ii) the free movement of personal data within the EU. These are the overarching principles that should always be taken into consideration in the application of the GDPR.

What is personal data and what are the basic principles for data processing?

What does the term personal data mean? In Article 4, the GDPR defines personal data as “any information relating to an identified or identifiable” person, meaning anyone who can be identified, directly or indirectly, for instance by reference to a name, an identification number, location data or other identifiable information. The processing of this type of information is protected by the GDPR. The term ‘processing’ here refers to, among others, the collection, recording, organisation, storage, alteration, retrieval, consultation, dissemination, erasure or the destruction of personal data.

The GDPR, in Article 5, sets out a number of principles that always need to be taken into account when processing personal data. Compliance with these principles will ensure the safe handling of personal data that respects the fundamental rights of those of whom data is processed.

One of those basic principles is that of lawfulness, which requires that all processing of personal data shall be based on one or multiple legitimate grounds set out in Article 6 of the GDPR. For special categories of personal data which are, by their nature, particularly sensitive (e.g., personal data revealing racial or ethnic origin, biometric data, data concerning health), processing is in principle prohibited, unless it is based on one or multiple legitimate grounds set out in Article 9 of the GDPR.

Another principle, that of purpose limitation, requires that personal data shall be collected for specified, explicit and legitimate purposes and may not be processed further in a manner incompatible with the original purpose. Moreover, according to the principle of data minimisation, no more personal data shall be collected than what is necessary for the realisation of the purpose for which they are processed. For example, collecting data that is not strictly necessary for the realisation of the TeNDER project would breach the data minimisation principle.

The principle of storage limitation requires that personal data is kept in a form which allows identification of the individual for no longer than is necessary for the purpose for which they are processed, though it may potentially be stored for longer periods in cases of processing solely for, e.g., archiving purposes in the public interest or scientific research purposes.

Together with the remaining principles (fairness and transparency, accuracy, integrity and confidentiality, and accountability) set out in Article 5, they form the basis of safe data processing under the GDPR and ensure that the fundamental rights of those of whom data is processed are protected.

TeNDER and data protection

With the TeNDER system intending to gather personal and medical information from its users, the consortium will ensure that processing of such personal data will comply with the rigorous legal guidelines set out above and in the GDPR as well as relevant ethical guidelines. This will guarantee that the fundamental rights of the research participants and eventual users of the TeNDER system are protected.

References

[1] European Data Protection Supervisor, Data Protection (website), see https://edps.europa.eu/data-protection/data-protection_en.

[2] European Union Agency for Fundamental Rights and Council of Europe, Handbook on European data protection law, 2018 edition, p. 19, see https://op.europa.eu/en/publication-detail/-/publication/5b0cfa83-63f3-11e8-ab9c-01aa75ed71a1/language-en.

[3] Article 8 of the Charter on Fundamental Rights of the European Union (7 December 2000); Article 16 of the Treaty on the Functioning of the European Union (25 March 1957).

[4] EU Regulation 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation), see https://eur-lex.europa.eu/eli/reg/2016/679/oj

No man is an island – we are all social creatures

How the current isolation affects us and especially the most vulnerable

“I think it’s very healthy to spend time alone.
You need to know how to be alone and not be defined by another person.”

– Oscar Wilde

What a strange world we live in these days! Due to the outbreak of Covid-19 and the current pandemic, public authorities across Europe decided in March that social distancing measures are necessary to slow down the spread of the virus. Social distancing, also called ‘physical distancing’, means maintaining space between yourself and others.

But is physical isolation not directly linked to social or emotional isolation? What happens when the beneficial ‘alone time’ described by Oscar Wilde exceeds the quantity of time we would like to spend alone? How do the elderly or people with neurodegenerative diseases such as Alzheimer’s perceive these times?

Loneliness is defined as a subjectively experienced aversive emotional state resulting from unfulfilled social needs [1]. Unlike depression or anxiety, loneliness is not clinically recognised; therefore, those who feel chronically isolated cannot be diagnosed or treated. However, loneliness makes us more susceptible to infections as it weakens the immune system.

How loneliness turns into disease

“Inflammation fuels disease processes in a host of devastating illnesses, including atherosclerosis, Alzheimer’s and cancer. […] Inflammation is not the disease itself; rather, it serves as a kind of molecular fuel that helps the disease thrive and grow.” [3]

When we experience loneliness, our body produces a defensive reaction at the cellular level to prepare it for any coming dangers. A part of our defense capacity is used for this.

“Our bodies see loneliness as a mortal threat. When we’re alone, there’s no one to help us fight off that saber-tooth tiger or the hostile war party from the next village. Sensing that we are isolated and at risk, our bodies ramp up their defences in anticipation of the wounds and infections to come. It was a pretty good survival tactic thousands of years ago. In the modern world, though, it’s killing us.” [3]

Emotional and physical pain is processed similarly by the brain. Humans are social creatures and therefore, interactions and connections are crucial for us. Researchers think that throughout evolution pain signals could have been “borrowed” to alert when we are socially isolated. In one sentence: “We need to take social pain just as seriously as we do physical pain.” [3]

We live in an individually-oriented society

What happens if in these times you live alone, or an elder member of your family does? According to figures published by Eurostat in July 2018, 34% of households in the EU were single-person households.

“Sweden tops the chart with over half (51%) single households, followed by Denmark (44%) and Lithuania (43%). At the other end Malta had just 20% single households, 22% in Portugal and Slovakia.” [4]

With the current contact restrictions, all these people spend much more time alone than usual. What can we do now to support the most vulnerable, such as the elderly and those suffering from a disease?

It is very important to stay connected. If the isolated person is not familiar with social media or the most recent communication technologies such as Zoom or Skype, use the good old telephone. Call him or her, every day. Give some of your time, capital which many of us dispose of these days.

You know that your neighbour is part of the risk group but you have never talked to him or her before? What if you leave a message in their letterbox or in front of the door, proposing to go grocery shopping for them or taking their dog for a walk.

You can also suggest to an isolated, vulnerable family member or friend to listen to music or to get creative and try painting to feel less alone. All the senses are no longer stimulated without external input. Especially for the elderly, these factors can deteriorate their cognitive functions and directly affect their health.

In the framework of our European research project TeNDER, we are developing an integrated care model for patients with neurodegenerative diseases, mainly, Parkinson’s, Alzheimer’s and other forms of dementia.

TeNDER will be useful in the care pathways of remote monitoring and it will help increase patient autonomy. Relatives and caregivers will feel more secure as they can manage care remotely. All this happens without face-to-face contact, therefore the current risk of exposing them to contamination can be greatly reduced while the sense of safety on both sides and the interconnection are maintained.

As John Donne already wrote in a poem in 1624: “No man is an island entire of itself; every man is a piece of the continent, a part of the main…” [8]

These reflections on solidarity seem still to be true 400 years later. No one suffers alone, we are in this together. Every crisis makes us stronger and this one certainly will, too.

References

[1] Peplau L, Perlman D. Loneliness: A Sourcebook of Current Theory, Research and Therapy. InterScience New York, 1982.

[2] Entis, L. ‘Scientists are working on a pill for loneliness’ Medium, 26.01.2019 [online] Available at: https://www.theguardian.com/us-news/2019/jan/26/pill-for-loneliness-psychology-science-medicine (Accessed: 15.04.2020).

[3] De Turenne, V. ‘The pain of chronic loneliness can be detrimental to your health’ UCLA Newsroom, 21.12.2016 [online] Available at: https://newsroom.ucla.edu/stories/stories-20161206 (Accessed: 15.04.2020).

[4] https://euobserver.com/tickers/142298

[5] https://ec.europa.eu/eurostat/web/products-eurostat-news/-/DDN-20180706-1?inheritRedirect=true

[6] http://www.euro.who.int/en/health-topics/health-emergencies/coronavirus-covid-19/news/news/2020/4/supporting-older-people-during-the-covid-19-pandemic-is-everyones-business

[7] https://www.cdc.gov/coronavirus/2019-ncov/prevent-getting-sick/social-distancing.html

[8] https://web.cs.dal.ca/~johnston/poetry/island.html

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.