Living Libraries

The purpose of the project was to explore how digital design can support the shift toward person-centered care by enabling meaningful patient and public involvement in research and innovation. The project aimed to design a digital platform the empowers people with lived experience of chronic conditions to actively participate in research that affects them, moving from research about patients to research with patients. 

In Sweden, there are platforms called Lived Libraries which are databases of patients or caregivers who would like to be contacted by researchers and companies to act as patient representatives for their health conditions. However, these lived libraries are regional limited, administratively heavy and have limited services. Low response rates, limited engagement in studies, and manual handling of patient representatives in Excel-based systems make collaboration time-consuming and difficult for both researchers and coordinators. This manual workflow also leads to the same individuals being repeatedly recruited for multiple studies, limiting diversity and representativeness amond participants and potentiallt affecting research outcomes. These challenges risk limiting patient participation despite strong interest and advocacy for involvement. 

The task was to create a shared digital space where patients, caregivers, and researchers can connect more easily. Through stakeholder mapping, user research, and a double diamond design process, the platform was shaped to increase engagement, improve transparency, maintain trust and simplify coordination. Key objectives included making research opportunities easy to understand and access, supporting informed consent, and lowering barriers for patients to contribute their knowledge, perspectives, and lived experiences.

The project resulted in Living Libraries, a digital platform designed to connect patients, caregivers, and research in a centralized and inclusive environment. Inspired by existing regional lived libraries, Living Libraries expands the concept into a scalable solution that supports research participation, education, and collaboration. By prioritizing patient empowerment, clear communication, and ethical engagement, the platform demonstrates how digital tools can transform complex, sensitive systems into more inclusive, impactful, and human-centered healthcare innovation.