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5.E Co-Designed Digital Care That Supports Inclusion, Reciprocity and Unpaid Carers

Monday, April 13, 2026
16:30 - 18:00
Hall 5

Overview

Digital Health Enabling Integrated Care SIG This session explores how co-designed digital care can strengthen inclusion, reciprocity, and support for unpaid carers across the life course. Drawing on international practice and research, it examines how digital tools are developed with older adults, carers, communities, and the workforce to complement, rather than replace, human care. Delegates will learn how co-production improves usability, trust, and equity in digital care at home, self-management, workforce coordination, and carer pathways. The session highlights practical lessons on blending technology with relationships, showing how digital innovation can enhance wellbeing, prevent escalation of need, and support more compassionate, sustainable integrated care.


Speaker

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Dr Petra Boersma
Senior Researcher
Inholland University of Applied Sciences

Care and well-being via a screen: Can tablets really make a difference for frail older people living at home?

Abstract

Background: In the Netherlands, the current policy states ‘self if possible, at home if possible, digital if possible’. This policy aims to provide older people with good and affordable care and support in the future, if needed. Care and social support are under pressure due to the increasing number of older people, while the number of care providers is not growing with them.
Approach: In response to this policy, a project in the Amsterdam region sought to explore the feasibility and effectiveness of integrated digital care through the Compaan table. Two nursing care facilities and one social care facility decided to join forces and deliver nursing and social care via a tablet, the Compaan. The Compaan is a safe, user-friendly tablet for remote care, designed for people without digital experience. It offers easy access, security, and enjoyment.
In 2019, the three organisations established the Interprofessional Learning and Innovation Network (IP-LIN) with a University of Applied Sciences. This learning community brought together nursing and social work students, professionals, and teachers to co-learn, conduct research, and develop digital care interventions, via the Compaan.
Between 2023 and 2025, we devised, tested, and evaluated two digital integrated care interventions in the IP-LIN using an action research approach with quantitative and qualitative data. Participants included students, professionals, project leaders, trainers, managers, and older adults living at home. Two interventions were suitable for implementation: the digital half-hour exercise session and the digital welfare button.
Results: The first research cycle initiated the digital project in the IP-LIN. In subsequent cycles, integrated care innovations with the Compaan began. The developed digital half-hour exercise session proved particularly successful and is still being offered on a weekly basis. Clients rated it with an average score of eight out of ten and reported improved mobility, relaxation, and a sense of trust and connection with one another. The welfare button initially met the needs of the participating older adults; however, after six months, usage declined due to outdated content and limited engagement. This highlights the importance of regular updates and ongoing user involvement in maintaining the effectiveness of digital tools.
Implications:
• Although developing and implementing integrated digital care and support require creativity and willingness on the part of all partners, this project shows that cross-domain learning and working is possible and has positive outcomes for all parties involved.
• Image-based care and well-being are particularly suitable for older people who do not yet require intensive care but need extra attention. There is still much to be gained in this field.
• Learning communities such as IP-LINs are an important breeding ground where professionals, students, and teachers can learn and innovate together. It is crucial to work together on a theme that is of interest to all the parties.

Biography

Petra is a nurse and obtained her PhD with research into the use of theatrical communication with people with dementia in nursing homes. The central theme of her current research focuses on how nursing and social care professionals and students can learn and develop in order to provide more person-centered care for older people living in the community and in nursing homes. She pursues digitally integrated care and investigates how formal and informal care providers can work together.
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Ms Anna Smith
Executive Manager
Forward Carers

Integrating Digital and Human Care – Reimagining the Statutory Carer Pathway

Abstract

Background
In many countries, an ageing population, increasingly complex caring roles and constrained health and care budgets have created growing pressure on services and the unpaid Carers who support those who rely on them. Despite their contribution to promoting wellbeing and sustaining independence, integrated care developments often neglect to consider how to engage and support unpaid carers. In England, through the Care Act (2014), Carers are entitled to a Statutory Carers Assessment to holistically identify needs and provide wellbeing support. However, only 23% of Carers are assessed each year and 42% report that follow-up support wasn’t provided. Traditional telephone assessments are lengthy and resource-intensive, contributing to waiting times and deterring engagement.
Approach
With funding from the Department of Health and Social Care’s Accelerating Reform Fund, Forward Carers (a Carer-centred Social Enterprise) developed iCASPAR® (intelligent Carers Assessment, Support Plan and Review), an online pathway integrating digital self-assessment with professional guidance. Co-production was embedded throughout, drawing on participatory design methods and the ladder of participation to ensure Carers’ voices shaped every stage. Over 400 Carers and Carer Advisors contributed via surveys, focus groups and iterative software testing sprints, and were rewarded for their time as experts by experience. Pre-design research identified key barriers to participating in the traditional assessment format: lack of time for a two-hour appointment, discomfort discussing personal issues in front of the cared-for person, difficulty articulating needs under pressure, and worry about burdening Advisors. Carer insights directly shaped more than 100 design improvements, including clearer explanations of data security, visible consent and sharing options, reframed safeguarding questions, and a warmer, empathetic tone throughout. Human oversight remains integral, ensuring that assessments are reviewed, safeguarding concerns are escalated, and unmet needs are referred for further statutory assessment.
Results
iCASPAR is currently in BETA testing, comparing like-for-like outcomes with the existing offline pathway. Early feedback shows strong engagement and positive experience. Carer-testers describe the platform as private, flexible and empowering. Importantly, Carers who have not previously completed an assessment have welcomed the opportunity to undertake their supported self-assessment. Advisor-testers report reduced administrative time and greater capacity to focus on complex or high-need cases. The platform’s Carer-led Support Plan enables individuals to select support options most relevant to their needs, improving ownership and likely uptake.
Implications
iCASPAR demonstrates how co-produced digital innovation can integrate digital access with human care to address both Carer and system-level challenges. By creating a flexible self-serve entry point with professional oversight, it reduces waiting times, supports early identification of Carers at risk, and improves equitable access to statutory support. As a learning system, iCASPAR will, in future, draw on insights from over 10,000 anonymised assessments to develop AI-enabled resource recommendations. While the intelligent component is not yet trained - due to insufficient structured data - this limitation avoids premature bias, reflecting a responsible approach to ethical AI. The model enables smarter prioritisation, strengthens prevention, and offers a scalable solution for integrated care systems seeking to balance efficiency, accessibility and humanity in statutory Carer support.

Biography

Anna is Executive Manager at Forward Carers, a social enterprise on a mission to create Carer Friendly Communities across England to improve outcomes for unpaid Carers. She oversees impact measurement, social value, and organisational learning, ensuring that Forward Carers’ programmes deliver meaningful change for Carers and communities. Anna has played a central role in developing iCASPAR, a co-produced digital Carer assessment platform designed to make statutory support more accessible and equitable. She also leads work on Carer Friendly workplace practices including Forward Carers’ SMART Working Week, a four-day work model that enhances staff wellbeing while sustaining high-quality, person-centred service delivery.
Simon Fenton
CEO
Forward Carers CIC

Co-Presenter: Integrating Digital and Human Carer - Reimagining the Statutory Carer Pathway

Biography

Simon Fenton is Chief Executive Officer and Director of Forward Carers, with over 30 years’ experience across health and social care. A qualified social worker, he brings extensive expertise in commissioning, social enterprise, and business leadership. Simon leads Forward Carers’ work on iCASPAR, reimagining the statutory Carer pathway through the integration of digital innovation and human-centred practice to improve access, equity, and system sustainability. He holds an MA in Partnerships and Health and Social Care Delivery and works closely with commissioners and system partners to design ethical, inclusive, and scalable approaches to Carer identification, assessment, and support.
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Mrs Janna Alberts
Phd Researcher at TUE/ Senior Researcher at Vilans
University Of Technology Eindhoven & Vilans

Exploring the role of technology in the malnutrition care ecosystem of older adults: first findings from a co-design approach

Abstract

Background:
Malnutrition frequently affects adults aged 65 and older and is linked to both physical and mental health complications. As malnutrition is a multifaceted issue, older adults often find it challenging to improve their dietary habits. Home care professionals, dietitians, general practitioners, and informal caregivers can play a role in supporting older adults to improve their nutritional status. However, previous research indicates that the collaboration amongst care network members is suboptimal due to time limitations, lack of shared awareness, limited role division, and communication.
Digital solutions may offer new opportunities to support the nutritional care process. However, existing digital tools, such as monitoring applications, social robots, or smart spoons, are not always designed with end-user involvement. Moreover, these tools overlook the broader ecosystem of older adults, where effective collaboration amongst care professionals, informal caregivers, and older adults is crucial. This leads to our main research question: How can technology play a supportive role in the nutritional care process of older adults while taking into account their care ecosystem?

Approach:
This paper presents a co-creation approach to explore older adults’ lived experiences with malnutrition and to identify opportunities for technology to support nutritional care within their ecosystem. Using a design thinking framework, the study aims to bridge the gap between dietetic practice and technological innovation.
Two sequential creative sessions were conducted: six older adults participated in the first session and four in the second. Before the sessions, participants received a sensitizing booklet to encourage reflection on nutrition and the support they receive from their care network. The first session explored participants’ experiences with malnutrition, the support they received, and their challenges in improving their nutritional status. The second session built on these insights, inviting participants to reflect on their discussions and design their ideal food experience. This process helped the researchers define meaningful design directions.

Results:
The first findings from this research reveal how older adults are: 1) experiencing food moments as a crucial moment of social interaction, which they miss due to loneliness, 2) norms and habits limited their awareness concerning increasing their nutritional intake, 3) older adults did not experience a reciprocal relationship, making older adults hesitant to ask for help. These first insights suggest that digital interventions should not aim to replace but rather enhance human interaction during meal times, by for instance help identify when social engagement may be beneficial. Additionally, reinforcing the reciprocal relationship within the care ecosystem by helping older adults visualize the role and contribution may improve their reciprocal experience towards their network.

Implications:
Most technological solutions addressing malnutrition primarily focus on functional support. However, these first findings highlight the importance of addressing the social dimension of malnutrition, specifically social interactions, reciprocity and connectedness within their care network. Digital interventions should therefore extend beyond nutritional functionality and foster the social and emotional well-being. This approach shows that when exploring technological intervention in the field of healthcare, starting from the end-user perspective is key to fully unfolding the opportunities for technology.

Biography

Janna Alberts has a background in Medesign and focuses on connecting technology with end users in elderly care. She has participated in various European research projects on healthcare innovation and is currently pursuing a PhD in Human-Technology Interaction at Eindhoven University of Technology, exploring how technology can address malnutrition through co-design, considering both end-user needs and the broader care network. At Vilans, she leads a team of researchers applying knowledge in the healthcare sector and conducts co-design research projects to translate insights into practical innovations for long-term care.
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Dr Christopher Poyner
Research Fellow
University Of Birmingham

Co-designing a Digital Matching Tool to Strengthen the Dementia Care Workforce and Personalise Home Care

Abstract

Background

Matching care worker skills and personal attributes to the individual needs and preferences of people living with dementia can enhance care quality, continuity, and job satisfaction. Yet, as workforce pressures grow, larger home care providers struggle to achieve this alignment efficiently. This study explored how computational matching could help create more responsive, person-centred care schedules while supporting workforce continuity and sustainability.

Approach

Using Experience-Based Co-Design, six iterative workshop rounds were held with four stakeholder groups: people living with dementia (n=4), family/friend carers (n=6), domiciliary care workers (n=7), and care managers (n=3). Each group first met separately to identify challenges and priorities before joining together to co-design a prototype app. The app aimed to (1) match preferences of clients, carers, and providers, and (2) generate ‘live’, needs-informed schedules that optimise workforce deployment. Across 30 hours of group meetings and individual review, participants shaped both the interface and the algorithm design.

Results

The co-design process successfully informed a working prototype that integrates personalisation with workforce planning. The approach demonstrated how technology can facilitate better matching between care worker strengths and client needs, having the potential to improve satisfaction and continuity for both. Iteration allowed participants to navigate tensions between designing for current workforce constraints and envisioning a more sustainable, integrated care system. The process itself enhanced participants’ understanding of workforce interdependencies and highlighted opportunities for digital tools to reduce role strain and inefficiency.

Implications

Co-designing technology with people with lived experience is both feasible and essential for ensuring relevance, usability, and ethical alignment. Our iterative, transparent approach fostered shared understanding and agency across stakeholder groups. Our co-design method was transparent and collaborative. It facilitated shared ownership and identified practical solutions that hold potential to develop interventions that support both people receiving care and those providing it. Findings underline the need to embed lived experience involvement from the earliest research stages and within system-level planning to avoid reproducing inequities in future digital care tools.

Biography

My current post as an NIHR ARC Dementia Fellow at the University of Birmingham commenced in February of 2023. Thematic areas of my current research include exploring life in rural areas of England with dementia, how to better support people living alone with dementia, community-based peer support, and how to better provide domiciliary care to people living with dementia. In December I will begin a new role at the University of Worcester where I will work on an NIHR funded programme of research centred upon rural mental health inequalities. I will lead a theme focused on suicide prevention.
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Denise Quesnel
Simon Fraser University & BC SUPPORT Unit

Compassion by Design with Emerging Adults: Addressing Psychosocial Gaps & Chronic Health Challenges Through Co-Produced Theory and Digital Interventions

Abstract

Background: Childhood-onset chronic physical illnesses are common, with global prevalence rates between 13-30% in youth, with 30-60% prevalence of mental illness comorbidity. Gaps and inequities are growing for this group, whose negative psychosocial functioning and quality of life outcomes have been consistently noted for decades. Youth with childhood onset physical conditions often report transdiagnostic vulnerability factors including high levels of shame, self-blame, self-criticism, and low-self compassion. As an intervention, compassion has demonstrated mitigation of these factors, further catalyzing adversity into positive growth, promoting health and quality of life, and reducing future mental health risks across the lifespan.
Because the developmental phase of emerging adulthood (age 15-29) is critical for developing lifelong health capabilities, we started in 2017 a 7-year long partnership with youth with lived experience of chronic illness to explore compassion-based interventions attending to context and mechanisms of 'what works, how, why, for whom, in what circumstances’.
Approach: This longitudinal research offers scalable insights for emerging adult mental healthcare via realist, ethnographic, and participatory approaches. First, with 147 key informants (youth, families, health providers, researchers, designers, contemplative practitioners) we refined compassion-based theory to inform design and implementation of a psychosocial VR intervention for later phases. An initial priority setting activity determined that contextually-informed digital interventions for psychosocial support in youths’ home communities was prioritized: youth were enthusiastic about virtual reality and compassion-based principles; conversely, they rejected disease self-management and Cognitive Behavioural Therapy.
Results: Theory refinement and testing revealed patterned inequities in accessing compassion across illness types and gender: visible or medically recognised conditions were met with validation of suffering, while stigmatised/invisible conditions met invalidation, dismissiveness, or “conditional compassion” contingent on compliance or concealment of suffering, especially among girls/women and gender minorities. These are linked to recognition regimes - patterned social logics determining whose suffering is seen as ‘legitimate’ or ‘deserving’ of compassion. These recognition regimes shaped mechanisms: validation cultivated emotional safety, self-compassion and trust; invalidation or conditional compassion produced shame, distrust and threat activation (protective anger, vigilance, avoidance), making compassion feel unsafe and limiting the ability to receive or give it. To redress this, technology can provide a ‘soft entry’: virtual reality and embodied peer-to-peer virtual environments can operationalise compassion as promotive (early skill-building) and reparative (attachment) practices, offering relational, engaging, and developmentally congruent contexts for transfer to daily life.
Implications: Individual self-compassion training alone is inadequate without system conditions enabling non-contingent, relationship-based compassion across families, peers, schools and services. For instance, while compassion is widely cited as a value in integrated care, it is rarely operationalised, structurally enabled, and assessed. We propose compassion as a relational, health-equity mechanism for integrated care: a shared value translated into testable mechanisms, design requirements and health and social practice norms. We introduce the Compassion by Design framework to embed these mechanisms across micro–meso–macro levels, aligning prevention and technology with lived-experience priorities. This reframing moves towards implementable compassion, reducing inequities linked to wider social recognition regimes, strengthening prevention, and improving psychosocial outcomes for young people with chronic conditions.

Biography

Denise is a transdisciplinary researcher and PhD Candidate at Simon Fraser University, and Patient Engagement Specialist at BC SUPPORT Unit Fraser Centre- BCs largest health authority. She spans roles with systems thinking, tacit expertise and human-centred design. She collaborates with community members including people with lived experience of health conditions, researchers, health and social systems, care professionals, designers, and educators on digital and non-digital interventions, implementation research + practice, and creative knowledge translation tools for supporting positive life trajectories. She has 20+ years as a health advocate and person with lived experience of complex health conditions, and parent caregiver.

Chair

Ms Diane Whitehouse
Principal Ehealth Policy Analyst & Editor-in-Chief
European Health Telematics Association (EHTEL)

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