TeNDER and the Quality of Life of people with chronic diseases

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’’[1].

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TeNDER successfully completes pre-piloting phase

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.

Stay tuned for more updates by following us on Twitter and LinkedIn, and by subscribing to our bi-annual newsletter! 

Outcome of the Sustainable Places Conference 2020

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.

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.