Visualizing the care in rural healthcare - Booklets, Profiles and Atlases for community palliative care

Tech and data in rural healthcare is no new feat. However, data collection is extractive, top down and it travels outside or upwards for synthesis and visualization. What comes back (if they do) are lengthy reports, templatized dashboards, messy excel files etc. As a result, data, for those on ground, becomes a bureaucratic duty rather than a tool for local decision making. This talk is about how visualisation would look if it was imagined as care infrastructures and co-designed with actors central to the rural healthcare system - front line workers, Gram Panchayat officers, volunteer doctors, PHCs etc.

I will present our visualization and codesign work on the Decision Support System (DSS) that is being developed alongside a Community Palliative Care (CPC) initiative across seven Gram Panchayats in Kundapura, Karnataka. In this context we have co designed with a cluster level taskforce, a mobile care team that provides home based palliative care to seekers in the community, volunteer doctors who help make care plans etc. The DSS comprises physical and digital tools to enable local decision making, making visualizations central to the care infrastructure. It is designed to be decentralized, phygital, self-hostable and offline first.

Specifically in DSS I will talk about careseeker profiles. These are individual records used to assess needs, create care plans, manage referrals, and track each careseeker’s progress. I will share our explorations, codesign process and visualization methods through the following artefacts

Phygital Care Profiles - Used by care teams and volunteer doctors to design and monitor individualized care plans across medical, emotional, and psychosocial domains. We worked with the mobile care team and doctors to build on their visual language and visualise the data collected for each care seeker. Some unique visualizations include family trees to understand care giving patterns, hand-drawn route maps (in absence of geospatial data), pain areas / assessment scales etc

Care seeker booklets - Physical books given to each seeker. They act as no tech interfaces for seeing, monitoring and updating details of care. It contains information related to their condition, trackers for everyday monitoring, care plans, care team visit logs, tear off referral slips that can be taken to PHC, hospitals etc. This artefact as a method explores physical methods of visualizing and updating data in contexts with low digital accessibility and literacy.

Data Atlas - A customizable spatial dashboard for Gram Panchayats, PHCs, and the taskforce to view overall insights specific to their needs. This will assist in medical consultation, procedures at PHC, referrals to private hospitals, scheme allotment and aid at the GP and resource and infrastructure related decisions with the taskforce.

This talk is important to me and relevant to the theme because it becomes a platform to demonstrate the complexity of working with communities and rural governance systems on field in a conference of varied practitioners who may contribute to this sector in different ways. This talk is useful for students, information designers, researchers, civic and govt data enthusiasts, people working in the social sector etc

Key takeaways

1. Visuals for contexts that have - varying literacy, low-connectivity, multi lingual needs
2. Creating hybrid physical-digital visualization systems
3. Open source, self hosted, offline tools as a way to enable autonomy and ownership.
4. Tools for participatory visualization that prioritize people and decisions over features and numbers (ex. actor decision matrix, practice prototyping)

Speaker Bio Abhiram Jois is a creative technologist at Aruvu Collaboratory. He has been working in the space of community and tech for the last 3 years. His work began with working on the Channapatna Health Library with front line health workers in Channapatna and has worked with organizations like Design Beku and Janastu. Currently he is working on multiple engagements in Kundapura and Bidar. He previously spoke about portable community servers at India FOSS 25.