Digital itineraries
Photo by Alex Shuper on Unsplash
People with chronic illness and disability routinely navigate care using digital tools, social media platforms, and online communities. For many, COVID increased reliance on digital tools and platforms as crucial means of accessing care and also avoiding pandemic risks. This project is a community-driven, multi-method study of how people assemble and deploy diverse digital tools to manage their care. These digital tools can include social media, apps, self-monitoring devices, and remote health care services.
The aim of this project is to develop a study alongside people with chronic illness to understand the risks, opportunities, and choices they face in using multiple and divergent digital tools related to their health. Together we will develop community-informed definitions of digital safety and digital risks, challenging current top-down and one-size-fits-all definitions. This information will be used to help patients advocate for digital care tools that meet their needs, and to better inform clinicians about the ways patients actually use digital tools in their everyday lives.
This project builds on a concept from medical anthropology called "therapeutic itineraries." This concept has been crucial for elevating the complex experiences of patients navigating care through fragmented, costly, and sometimes confusing health systems. This project builds on that concept to focus on "digital therapeutic itineraries" as a particularly important means of understanding how patients manage chronic illness in complex health and digital environments.
Project Stages
Key informant interviews
Paid interviews with patient / advocate experts on chronic illness, disability, and digital tools will help inform project goals and objectives, key questions, and methodological approaches. A key goal of this stage is to develop a participatory research approach that is inclusive, accessible, and just for participants.
Participatory data collection
A diverse group of people with chronic illness will engage in a series of activities to document how they use technology in managing their health, what they think about it, and what opportunities and risks these digital tools introduce in their lives.
Collective reflection + dissemination
Research participants will convene to share what they have learned with each other, review data, interpret results, and discuss goals for disseminating what they have learned to key stakeholders, policymakers, and the public.