Technology in Stroke Recovery

Throughout the world, highly advanced wearables and sensor devices are being used on a daily basis. Advancements in the field of science and technology give rise to more effective tools for disease prevention and recovery.

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PlatformUptake.eu meets Parkinson Madrid Association

The Parkinson Madrid Association (APM) is a non-profit organisation whose main mission is to improve the quality of life of people affected by Parkinson’s disease and their families. It was founded in 1994 and declared a Public Utility Entity by the Ministry of the Interior in 2001. The Madrid Parkinson’s Association currently has 2000 members, 130 volunteers and 58 workers.

In an interview with Ms Jennifer Jiménez Ramos, who is a Project Manager at APM and a TeNDER partner, PlatformUptake.eu discussed the role of digital technologies and open platforms for the improvement of quality of life of older people affected by Parkinson’s disease.

On the question of how important the technological support for older people and carers from the organisation’s perspective is, the interviewee stated that the current global health situation has brought to the forefront the usefulness of new technologies regarding the provision of care and paying attention to the needs of older people. Ms Ramos continued by explaining that a pandemic does not need to be present for this to happen. The older people often have difficulties in getting around, due to their own health problems, to the absence of people who can accompany them, or to the place where they live. For this reason, new technologies provide their carers and family members with a great opportunity to get closer to them and provide them with quality services and security in their daily lives.

Next, Ms Ramos was asked if APM has used or developed open platforms or AAL/AHA solutions to support older people, family carers, and care professionals. And if so, she was asked to provide some examples. According to the interviewee the Parkinson Madrid Association has already participated in several projects aimed at creating integrated care systems with the monitoring of patients’ symptoms and activity and creating a communication network between the different actors involved. Thus, the initiatives sought to promote the interrelation between patients, carers, and professionals and increase patients’ autonomy and quality of life. Moreover, as a result of the projects caregivers can feel calmer and relieved of the guilt that often derived from leaving their loved ones alone. Professionals also benefit from the developed systems by having objective, real-time data on their patients’ symptomatology and activity.

Finally, the interviewee was asked to highlight some important aspects of the APMs work. Ms Ramos explained that during the COVID-19 crisis, the association has developed a new project to provide streaming rehabilitation for everyone. The sessions are open through the association’s website using a live Youtube channel. In addition, APM has launched its own application for remote therapies, enabling older people to receive their treatment both individually and in groups.

According to Ms Ramos the specialisation of the professionals at the Association make it an ideal place for students from different disciplines to train, not only in their specific area of studies but also within the provided service model. Additional courses, workshops, and conferences are held by ATM for caregivers and those who are affected by Parkinson’s disease. Every year the organisation carries out 2 major general awareness events, International Parkinson’s Day, and its own campaign in Madrid – “Music for Parkinson’s.”

To conclude the interview Ms Ramos explained that APM promotes innovation in all the therapy disciplines. The organisation offers and frequently expands its services in the search for the latest treatment trends. For example, it has added activities such as Pilates or Taichi to its catalogue of services. It has also acquired virtual reality equipment to include in its sessions.

TeNDER has published two public deliverables

TeNDER has published two public deliverables on data protection and on the project’s monitoring services.

Deliverable 1.1 lays out the main requirements with regard to fundamental rights for data protection and privacy. From day one, the project has ensured that data protection, ethics, and privacy law are embedded in TeNDER’s integrated care system. This deliverable will be followed by further reports at different stages of the development, implementation, and monitoring of the project.

Deliverable 2.2 is a preliminary analysis of the needs and gaps of Integrated Health Care Service Provision from the point of view of TeNDER use cases. Project partners have worked together to define and validate the suite of TeNDER service provision.

Both deliverables exemplify the consortium’s commitment to rigorous research methods, ethical standards, and data protection guidelines. Throughout the life of the project, you will be able to find a selection of the project’s public deliverables as they become available here.

WHO and EU-funded Health & Care Cluster collaborating on webinar series

Last year (2020), the World Health Organization’s (WHO) Global Cooperation on Assistive Technology (GATE) launched the Digital and Assistive Technologies for Ageing (DATA) initiative to encourage the global development, synthesis, and use of affordable, quality, digital and assistive technologies to cope with the challenges brought on by ageing.

To explore the wealth of research carried out internationally on digital and assistive technologies for ageing, WHO DATA, in collaboration with the EU’s Health & Care cluster, organised a first webinar on 21 May 2021. The online event brought together ten large-scale pilot projects funded by the European Commission, to show how digital and assistive technologies can be used together to enhance smart and healthy ageing in communities across diverse European contexts.

Researchers and digital experts shared their experience in long term co-design in ageing and large-scale digital health projects. TeNDER, for example, provided input based on our experience developing and implementing meaningful collaboration processes.

Throughout the webinar, speakers underscored the importance of the human component in designing, deploying, and assessing assistive technologies and digital solutions. The presentations shared the vision of research and innovation in the field of health and care and highlighted practical steps to obtain real commitment from decision-makers in the process.

Recent examples of pilots amidst COVID-led restrictions showed the relevance of interoperable technologies to provide tailored and timely solutions to users. Informed discussions were held on technical choices around key performance indicators, service sustainability, services’ innovation, users’ personas and piloting methodologies.

WHO work on digital and assistive technologies

The WHO launched the Digital and Assistive Technologies for Ageing (DATA) to encourage the development of and promote access to assistive technologies for people with impairment or decline in physical or mental capacity, with a particular focus on older people.

Within WHO, DATA brings together perspectives from a number of different departments; including Ageing and Life Course, Digital Health and Innovation, Health Systems and Service Provision, and Health Products, and Policy and Standards.

Working with service providers and users, industry, and civil society, DATA will span boundaries to produce more integrated and cohesive services for older people. If you are interested in exchanging information, sharing knowledge on latest research and contribute to discussion around  enabling environment on digital and emerging assistive technologies for ageing we invite you to join the DATA community. The initiative builds on the successful WHO Global Cooperation on Assistive Technology (GATE) and healthy ageing initiatives, and similarly will be applicable low-income, middle-income, and high-income contexts.

EU work on digital and assistive technologies

The Health & Care Cluster gathers ten Large-Scale Pilot projects financed by the European Programme for Research and Innovation, Horizon 2020. The cluster counts 5 working groups focused on Dissemination, Architecture, Use Cases, KPIs (Key Performance Indicators) and GDPR (General Data Protection Regulation). The Health & Care Cluster projects are framed within the OPEN DEI Innovation Action aligning reference architectures, open platforms and large-scale pilots in Digitising European Industry.

Explore the large-scale pilot projects in the Health & Care Cluster:

Tender: affecTive basEd iNtegrateD carE for betteR Quality of Life

Activage: Internet of Things for ageing well

Adlife: integrated personalised care for advanced chronic patients

Faith: a federated artificial intelligence solution for monitoring mental health status after cancer treatment

GateKeeper: Smart data driven solutions for personalized early risk detection and intervention

InteropEHRate: HER in people’s hand across Europe

Pharaon:  pilots for active and healthy ageing

Shapes: Smart & Healthy Ageing through People Engaging in Supportive Systems

Smartbear: smart big data platform to offer evidence-based personalised support for healthy and independent living at home

Smart4Health: Citizen-centred EU-HER exchange for personalized health

The first wave of pilots: Views from the ground

The first wave of TeNDER pilots will end soon. During the next few months, our user, technical, and research partners will consolidate the data gathered from the five different pilot sites. The results will be analysed and adjustments will be made in time for this fall (2021) when the second wave will commence. They will also consult participants to ensure that the next iteration integrates their feedback, as well as to capture improvements in quality of life.

Thanks to careful planning, user consultations, as well as the timely implementation of contingency plans to mitigate the impact of COVID-19 restrictions, partners were able to build trust in the system, ensure it is fit to address the needs of users, and conduct the pilots safely.

To date, 125 participants have been recruited across the Madrid region (Asociación Parkinson Madrid and Servicio Madrileño de Salud), Bad Aibling (Schön Klinik), Ljubljana (Spominčica – Alzheimer Slovenija), and Rome (University of Rome – Tor Vergata). Participants include patients with cardiovascular diseases (CVDs), dementia, and Parkinson’s disease (PD), as well as caregivers, and health professionals. By the end of the project, we will have reached an estimated 1,500 users. We will also have tested the full range of the TeNDER technological toolbox and the system’s services.

Our ultimate aim is to empower users, allowing patients to track and manage their health, social environment, treatment, and medical appointments for as long as they can. For those whose conditions have limited their day-to-day functions, we hope that the TeNDER system will help extend their independence, support their daily activities with necessary reminders and suggestions, and keep them safe by monitoring mental and physical health markers.

TeNDER’s assistive system is designed to provide support, not replace people’s personal connections. While a key goal is to ease the burden of care placed on those who surround patients, this is so that all users can have more time to nourish their relationships, engage in activities that are mentally and physically beneficial, and markedly improve people’s quality of life.

Testing the technological toolbox

During the first wave, patients (with CVDs, dementia, or PD) at the Schön Klinik – Bad Aibling (SKBA) hospital and its Alzheimer’s therapy center, have been testing the Fitbit smartwatches and the Withings Sleep-Analyser.  

Researcher testing the TeNDER system at Schön Klinik

Researchers have been able to visualise each patient’s heart rate, steps, and sleep quality – including the detection of abnormal sleep patterns – using the Fitbit and Withings apps on smartphones, which will soon also be available on the TeNDER-App.

For its part, Asociación Parkinson Madrid (APM) has naturally focused on patients with PD with plans to include caregivers and health professionals. APM is conducting their pilots in the rehabilitation room scenario, involving the use of the Kinect camera and smartwatches. Pending the further relaxation of COVID-19 restrictions in Madrid, APM may be able to test other devices in home environments.

In daily therapy sessions, some patients wear smartwatches and perform routine exercises that the Kinect camera captures and analyses. 

Exercise session at Asociación Parkinson Madrid

Also in Madrid, the Servicio Madrileño de Salud (SERMAS) has been testing the smartphone application and recording basic vitals. It has been working with different types of patients, caregivers, and primary care physicians and nurses. Uniquely, SERMAS is working closely with engineers at the Polytechnic University of Madrid (UPM) to train the algorithms and optimise our data collection.

In Rome, our partners at the University of Rome – Tor Vergata (UNITOV) are recording basic vitals and testing some of TeNDER’s smartphone-integrated services together with patients with dementia and PD, as well as their caregivers and doctors.

Similar to APM in Madrid, UNITOV is waiting for further easing of COVID-19 restrictions to install and test further devices in home environments. In addition to wearables and smartphones, these devices will also include sleep sensors, mini-PCs, and Kinect cameras

RGB-depth sensor

Finally, in Ljubljana, our partners at Spominčica – Alzheimer Slovenija (SPO) have been working with patients with dementia, their family members, and caregivers in their home environments.

Users are testing the smartwatch together with localisation sensors, sleep-analysers, and microphones that can capture general emotional reports in the environment, which are locally processed in the TeNDER system.

SPO is also conducting detailed consultations with professionals and patients, and is integrating their feedback into the system reports. These reports not only feed into the data that trains the algorithms, but they also provide invaluable input that helps us improve the system and its interfaces. User experiences, opinions, and suggestions are key to making TeNDER services person-centered and fit to help address user needs.

Initial reception

Throughout the first wave, patients, caregivers, and health and social care professionals have shown great interest in several services. SKBA reports that the latter group has found the sleep analyser especially helpful, particularly in detecting signs of unknown sleep apnoea.

When using the smartwatch, patients have reported that they are more motivated to stay physically active, proudly referring to the number of steps they are taking every day.

We have also seen the benefits of the work user partners put into meaningfully involving users from the start of the project. SERMAS, for example, has held training sessions with professionals in different primary care centres in Madrid. While SPO held several focus group meetings early on in the pre-piloting phase. These efforts have given us great insight into people’s perceptions regarding assistive technology, as well as user expectations.

The collaboration process, together with TeNDER’s rigorous adherence to data and privacy protection guidelines, has helped build trust amongst current and potential users. Thanks to this, patients who have participated in the projects have expressed general satisfaction and great interest in what comes next as the system is improved and its benefits extended.

At TeNDER we will continue to strive to preserve the sentiment recently expressed by a participant in Madrid: “I am very proud to be able to participate in something that will be the future.”

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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