MyCareBudget: Co-creating a Healthcare Digital Commons with and for Disabled Citizens and their Unpaid Carers

Title of the Paper

MyCareBudget: Co-creating a Healthcare Digital Commons with and for Disabled Citizens and their Unpaid Carers

Paper Information

• Research Area: Human-Computer Interaction (HCI), Social Justice, and Community Healthcare Infrastructure
• Keywords: Participatory Design, Action Research, Sustainability, Unpaid Carers, Disability, Personalized Health Budgets, Healthcare, Digital Commons, Wiki

Research Background and Issues

• Problems or Challenges:

  1. Unpaid carers face complex tasks when providing care at home, with a lack of integrated health service support.
  2. Disabled individuals and their families lack tools and support for managing personalized health budgets, leading to increased management stress.
  3. Existing research on technological interventions often neglects issues of sustainability and democratic governance.
  4. Power dynamics in designing socio-technical interventions pose challenges to equity and depth of participation for marginalized groups.

• Significance: This study focuses on the needs of vulnerable groups (disabled individuals and their unpaid carers) and seeks to address their practical challenges through technological innovation, while proposing sustainable solutions. Addressing these issues is not only crucial for the rights of marginalized groups but also for national healthcare and social welfare.

• Research Motivation and Related Work:

  1. Adhering to the principle of "Nothing About Us, Without Us," placing disabled individuals at the core of research collaboration.
  2. Previous studies emphasize the expertise and lived experiences of disabled individuals and unpaid carers, but traditional technology design often overlooks their actual needs.
  3. Advocating for participatory design (PD) to explore more democratic and sustainable forms of service creation, positioning digital commons as a potential solution.

Solution

• Proposed Method or Solution: The authors collaborated with 23 disabled individuals, unpaid carers, and a care organization using a participatory design approach to create the digital commons platform “MyCareBudget.” This platform focuses on providing care documentation necessary for managing personalized health budgets, serving over 5,000 users.

• Innovations:

  1. Innovative Participatory Design: Utilizing asynchronous, remote collaboration to reduce the time burden on participants (disabled individuals) while ensuring an accessible research environment.
  2. Application of Digital Commons: Sharing and collaboratively updating care documentation through a Wiki-style platform to foster community knowledge accumulation.
  3. Governance Structure Considerations: Establishing a democratic governance model for the platform early on to support long-term use and ensure trust and management mechanisms for the content.

• Implementation Steps:

  1. Participant Recruitment: Including disabled individuals, unpaid carers, and third-sector organization staff.
  2. Research Cycle Planning: Conducting action research in three cycles, with the second cycle focusing on co-designing the digital platform.
  3. Selection of Design Tools: Using free tools such as Collabito, ProvenByUsers, and InVision to accommodate participants' varying device capabilities.
  4. Eight Design Activities: Spanning from needs discussions, document categorization, rapid prototyping, to website promotion, with iterative optimization based on research findings.

Research Outcomes

• Specific Outcomes:

  1. Creation of the MyCareBudget Digital Platform: Enabling disabled individuals to access care documentation through user-generated content.
  2. Knowledge Sharing: Collection of 70 care documents categorized into 19 types, available for global users to reference and modify.
  3. User Engagement: The platform has been accessed by over 5,000 users, with approximately 200 new users joining each month.

• Advantages Compared to Existing Solutions:

  1. Sustainability Design: Built using open-source software to reduce ongoing operational costs.
  2. Serving Marginalized Groups: Providing accessible and user-friendly health management support for time-constrained and socially isolated residents.
  3. Data-Driven Governance: Iterative optimization of documents through user suggestions and discussions.

• Experimental or Evaluation Results: Since its public release, the platform has seen stable global user growth, with feedback indicating a widespread need for these resources.

• Limitations and Future Directions:

  • Limitations:
    1. The digital commons platform is internet-dependent, potentially excluding users without internet access.
    2. Long-term management requires institutional or community support, posing potential risks.
  • Future Directions:
    1. Investigating how technology can connect marginalized populations with public institutions to improve dialogue dynamics.
    2. Conducting follow-up research to promote broader adoption of the service and optimize the platform's user interface and functionality.

Conclusion

This study, through participatory design, collaborated with disabled individuals and unpaid carers to create the digital commons "MyCareBudget," providing a significant example of technological intervention to support marginalized groups in healthcare and social welfare. It also offers specific recommendations for the HCI field, expanding the scope of participatory design and social justice research.