From exclusion to inclusion: rethinking digital health for all

Presentation for the workshop: "From exclusion to inclusion: rethinking digital health for all" held at the International conference for an Inclusive Digital Society. Description From Exclusion to Inclusion: Rethinking Digital Health for All Ruixuan Zhang1, Caterina Santoro2, Silvia Cazacu-Bucica2, Caroline Figueroa1, Anneke Zuiderwijk1 1Delft University of Technology, Netherlands, The; 2KU Leuven, Belgium Background While Health, Public Services, and Digital Inclusion are rapidly growing fields, there is a critical gap in knowledge on how to meaningfully include diverse citizen voices in the development of public digital health services. Ensuring inclusion in digital health services is crucial not only for achieving equitable access but also for improving health outcomes, fostering trust in digital solutions, and preventing the deepening of existing health disparities (Figueroa, Luo, Aguilera, & Lyles, 2021; Saeed & Masters, 2021; Sieck et al., 2021). New digital technologies, such as Artificial intelligence (AI), only increase the urgency to examine this topic. AI is reshaping health and public services, but its development often excludes diverse citizen perspectives, particularly those from underrepresented communities, such as those with lower digital skills, lower incomes, and racial/ethnically marginalized individuals. This exclusion risks perpetuating systemic inequities, as digital health technologies are frequently designed by scientists and engineers who may lack the lived experiences needed to address real-world inequities. Inclusion aspects of digital public health services may be examined from various perspectives. First, the topic may be explored through the lens of how various actors collaborate to reshape the design of health systems and policies, enhancing the promotion of equity, addressing health disparities, and delivering real-world impact. This perspective concerns, for instance, how the design and development of Digital Health Technologies, such as apps and platforms for managing anxiety, depression, or chronic conditions, can meaningfully integrate citizens’ needs, preferences, and lived experiences to ensure accessibility and effectiveness (Ben-Yehuda, Dreazen, Koren, & Peleg, 2022; Fitzpatrick, Darcy, & Vierhile, 2017; Tighe et al., 2017). Second, scholars have investigated the (lack of) inclusion in public digital technologies due to non-inclusive design processes. An example of this perspective concerns the struggles many citizens face in using public digital services in the Netherlands (Hoevenagel & Joosse, 2022), where complex systems, digital literacy gaps, and a lack of user-centered design create barriers to access. Without careful attention to inclusivity, digital health services risk excluding vulnerable populations, such as older adults, individuals with low digital skills, or those with disabilities. In parallel, literature in critical data studies invites reflections on how to design equity-driven strategies that ensure the voices of all social groups are included when digital infrastructures intersect with public policymaking (Taylor, 2017). This workshop addresses these perspectives by examining collaborative design approaches and exploring how digital public health services can be developed to be truly inclusive and accessible for all citizens. It addresses the urgent need to shift from exclusionary practices toward participatory approaches and policy strategies that center equity in the development of public health services. Objectives and audience We propose an interactive 1.5-hour workshop that addresses the following objectives: Share experiences and case studies: We want to take advantage of the diversity of experiences and expertise we can access in this workshop and propose an exploration of examples, practices, and projects where inclusion was or was not well addressed, following the lead from the two case studies that will be presented. Explore Equity-Driven Strategies: Identify promising strategies and policies to engage diverse citizens—across age, socioeconomic, cultural, and geographic divides—in public health service design to promote fairness and justice. Develop reflexivity for the researchers involved in the workshop: contribute to greater self-awareness regarding how personal assumptions, disciplinary backgrounds, and societal contexts shape digital health research. Participants will learn about inclusion-related problems in public health services. Furthermore, participants will share experiences and examples of initiatives that are currently working to enhance this type of inclusion that may be more widely applicable to other cases. We expect that the audience of this workshop will consist not only of academic researchers but also practitioners from industry, non-profit organizations, and government organizations. We will actively send personal invitations to potential workshop participants, considering that we seek a diverse group of participants from different types of organizations (e.g., universities, NGOs, government organizations) in different countries (e.g., various countries within and outside the EU). We will use our extensive networks to recruit diverse participants while at the same time opening up participation to other individuals and groups outside of our networks. Agenda The workshop will include case study presentations, an interactive exercise, small group discussions, and a plenary discussion. - Introduction by Ruixuan Zhang (5 minutes). Examples like co-creating AI-driven telemedicine systems and health monitoring platforms will be explored as case studies to inspire the discussions. - Presentation 1: “Digital Inclusion in Public Health Services – the case of DigiD” by Anneke Zuiderwijk (10 minutes). This case concerns the perspective of the exclusion of various groups in using digital health technologies (perspective one mentioned above). - Interactive exercise by Caterina Santoro, Silvia Cazacu-Bucica, and Caroline Figueroa (10 minutes). We will use the physical space to let respondents express their opinions about specific statements, partly derived from research conducted within the European project Towards a Sustainable Open Data Ecosystem (ODECO). The participants will stand at a specific place if they agree with the statement and another place if they disagree. They may also stand in between these places. - Presentation 2: “A review of the current state of mental health apps for women, with the specific example of a digital program for women during menopause” by Ruixuan Zhang (10 minutes). This case concerns the perspective of integrating inclusion in the design of digital health technologies (perspective two mentioned above) and addresses existing gaps. - Discussion in groups, the participants will be divided into groups and will discuss the following questions: 1. What exclusion issues are you aware of in relation to digital health services? 2. What initiatives may improve inclusion in digital health services in general, and specifically digital interventions for women in menopause? The workshop organizers will rotate and join the different groups (30 minutes) - Wrap up and conclusions of the identified examples, practices, and projects. Representatives of each group will report on the discussion. We will order and prioritize the outcomes of the group discussion, using non digital tools (e.g., sticky notes, as well as pencils and paper) to increase opportunities for participation (15 minutes).