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Projects

Linkedin

Linkedin: @JA Hope4Kids

Contact

Contact information: wp2@kinderpalliatief.nl

Partners

International Children’s Palliative Care Network (ICPCN)

ICPCN is a global network seeking to improve acces to children’s palliative care. ICPCN’s network includes members in more than 140 countries. Members have access to ICPCN’s newsletter and online resources including educational content in many languages. ICPCN advocates for access and quality of children’s palliative care with the World Health Organization and other global platforms.

ICPCN

European Association for Palliative Care (EAPC)

EAPC is a professional organization “committed to supporting the promotion and development of palliative care throughout Europe and beyond”. Our Center staff frequently attend and present at the EAPC annual conference. In addition they serve in leadership positions and support the administrative work of the EAPC Reference Group for Children and Young People. Our Director, Meggi Schuilling-Otten is currently Chair of the EAPC Reference Group for Children and Young People. This group serves to promote children’s palliative care throughout Europe.

European Association for Palliative Care

Maruzza Foundation

The Maruzza Foundation works to ensure the right to access palliative care for all children who need it. The Maruzza Foundation hosts the Maruzza International Congress in Rome, a major gathering for paediatric palliative care researchers and clinicians.

Maruzza Foundation

Resources

Courageous Parents Network

CPN aims to orient, equip and empower families and others caring for a child with a serious medical condition and provide digital resources and an extensive media library used by families and clinicians.

Center to Advance Palliative Care

The Center to Advance Palliative Care is a US based organization that has supported the growth of palliative care as a specialty clinical service since 1999. Their website offers free resources on pediatric program development, marketing of palliative care, and educational offerings for operations managers and clinicians. Program Development. 

Center to Advance Palliative Care

Childhood Cancer International

CCI is the largest childhood cancer patient support organization, with member organizations in more than 100 countries.

Childhood Cancer International

Together for Short Lives (TFSL)

TFSL is a UK based organization that provides family support (emotional and financial), advocates for children’s palliative care in the UK, and providers resources to clinicians working with children who have life-limiting illnesses. TFSL also hosts an online provider network where clinicians can share expertise with one another.

Research Resources

International News

Transforming paediatric palliative care with AI and co-design

How AI is transforming care: insights from Prof. Masserdotti’s innovations.


Alessandro Masserdotti is an Italian philosopher specializing in the philosophy of science and a designer focused on human-technology interaction. As a Professor of Interaction Design at Politecnico di Milano, he bridges academic research and innovative design practices. He is also the Digital Director of Dotdotdot Agency, an organization dedicated to connecting open-innovation culture with the philosophy of healthcare and design. Based in Milan, Alessandro combines theoretical insights with practical approaches, contributing to discussions about the role of technology in shaping our society.

Prof. Masserdotti, you spoke at the 6th Maruzza International Congress of Paediatric Palliative Care as an expert in Artificial Intelligence. Can you give us some more information about your professional background and your work? 

There are countless ways to engage with technology. My personal journey towards it was originally shaped by questions and themes rooted first in philosophy of science and then in interaction design during my university years. This perspective frames technology not as an end but as a discipline capable of profoundly influencing relationships - both among people and between humans and the world around them.

I co-founded Dotdotdot in 2004 with two architects and a designer - to push the boundaries of design and technology in their relationship with people. While a social dimension has always been present in our work, it wasn’t until 2014 that we launched OpenDot, a fab lab and innovation hub dedicated exclusively to projects with a social impact in the fields of health and care, education, and the circular economy. 

Both Dotdotdot and OpenDot – that will become a Foundation in 2025 – are deeply rooted in research, and follow a co-design approach, involved in our iterative creative process - from the research phase to prototyping and testing - all stakeholders involved, also using specifically developed tools and techniques. This is of particular importance when dealing with projects in the field of health and care where patients, caregivers and medical staff are often the best problem solvers. 

In your experience, to date, what support can new technologies, including AI, give to healthcare professionals working in PPC? 

In our work, we have been leveraging digital technologies in health and care for years. In collaboration with a foundation dedicated to kids with disabilities – Fondazione TOG –  we work with children with wide arrays of issues, both cognitive and motor disabilities, some of which also apply to kids in PPC. Together with TOG, through applying a co-design approach that actively involves caregivers and patients in all creative processes, we have developed a series of customisable items, such as writing aids, tutors, and toys. These are created using parametric design to meet the diverse needs of children with various disabilities.

Moving beyond product design, digital technologies offer substantial support to caregivers and health professionals by intelligently utilising data. Indeed, beyond their key role in collecting and analysing data for prevention, digital architectures enable the creation of interconnected networks among stakeholders to solve very practical issues – for both families, medical staff and researchers. 

We are, for instance, collaborating with the leukodystrophy research and care center Coala of the Buzzi Hospital in Milan to develop a digital platform that consolidates patient information. This platform helps parents and medical teams manage appointments, monitor treatments, and track progress within a single digital folder, reducing the families’ stress associated with managing rare diseases (that require moving amongst several doctors, often located far from home). This particular requirement emerged after an analysis of needs that we carried out together with the Coala center amongst the families of patients, researchers and medical staff (both within Coala and throughout the whole Italian territory).

In the context of PPC, digital tools can be used to enhance communication and engagement. In the project TOP! (Together to Play), developed with Fondazione TOG, we created a suite of customisable video games controlled via eye-tracking technology. These games enable children with complex neuropathologies to interact, express emotions, and understand therapeutic processes. Caregivers can tailor the games and use collected data to monitor engagement and improvement.

Another project, SayEye, incorporates adaptive machine learning for automatic eye-tracker calibration, offering a highly personalized experience. This open-source system includes PC software, an eye tracker, and a mobile app for creating intuitive content. SayEye supports rehabilitation sessions and everyday communication, allowing caregivers to simplify interactions. For instance, a caregiver can photograph a bar counter, send options to the care receiver, and the child can indicate their choice using eye-tracking on their tablet.

And in the future? What practical applications are being developed to improve the quality of life of young patients and the work of professionals? 

In palliative care, the wellbeing of patients takes precedence, encompassing both psychological and emotional health. It therefore becomes fundamental to monitor these parameters and build tools that are able to empathize with patients by adapting and improving their states of stress and anxiety. AI - especially in the form of Affective Computing - becomes a key supporting technology to do this.

Together with partners, we have for instance explored Brain-Computer Interfaces (BCIs) that analyze real-time data from electroencephalograms (EEGs). Although EEG data currently lacks the precision needed for reliable systems that allow young patients to communicate emotions like stress, ongoing advancements suggest this is a critical direction for integrating AI into PPC. Developing more refined tools could revolutionize emotional understanding and patient care in this field.

In your opinion, what are the elements of clinical practice that will remain the prerogative of humans? In which aspects of the care relationship can humans not be replaced?

All technology, including AI algorithms, are tools and must be considered as such. It is part of the history of contemporary medicine, starting from surgery and pharmacology, that technology is improving the quality and duration of our lives. These tools must first be understood and known in order to be applied and used in a conscious manner. The human component has two irreplaceable prerogatives and roles in this. The most obvious one is the control and monitoring of results and solutions; the second, which is perhaps less obvious, is figuring out how these technological solutions can be applied and how they can innovate the field in which they are used. Technology is a means to innovate but it is not enough on its own. We need human imagination to conjure up ideas on how it should be applied and in which fields it can have the greatest positive impact.

How can healthcare professionals and AI specialists collaborate to develop solutions that are both ethical and effective for this sensitive demographic? Could you share practical examples where such collaboration has proven successful? 

Patients and their caregivers are often the best innovators because they understand their needs and know exactly how solutions should work. The same applies to healthcare professionals, who bring valuable expertise. After years of research, experimentation, and designing tailor-made solutions for people with disabilities, we partnered with the TOG Foundation to formalise our approach into a shared, repeatable methodology. This methodology is open source and centers on co-design, digital manufacturing, and rapid prototyping.

We started with a simple question: “We are all different, so why take care of everyone in the same way?” From there, we developed tools and a structured process to bring together designers, therapists, families, caregivers, and care-receivers in a collaborative design journey.

This process involves every stage of design: identifying needs, turning them into design requirements, brainstorming creative ideas, prototyping, and testing. It’s an iterative approach, requiring trial and error, and always aiming for total customisation. Digital technologies, such as rapid prototyping and digital manufacturing, make this level of customisation possible.

These tools also apply to designing AI solutions, where the focus shifts to the interface - ensuring patients, doctors, and caregivers can interact with the technology intuitively to achieve specific outcomes. For example, projects utilising pupil monitoring through machine learning models enable the assessment of stress levels in patients who struggle - or are entirely unable - to express or convey their emotional state. This technology helps caregivers better understand and address the stress levels of such individuals.

Importantly, our method doesn’t just focus on functionality. Aesthetics also play a critical role, particularly for younger patients, where the design’s appearance can significantly impact psychological well-being.

The results of this process are parametric, customisable solutions or open-source designs, created to be accessible to as many people as possible. The method has been so successful that it now underpins all our OpenDot projects and has helped us secure EU funding for collaborative initiatives. It has also inspired a collection of solutions developed with the TOG Foundation under the “Unico” brand - an open-source platform for accessible, innovative, and personalized care.


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