AI helps capture patient and caregiver experience in healthcare

Experiential knowledge from patients and caregivers is often overlooked in the development of healthcare guidelines. Social scientist Lea Lösch explored how artificial intelligence can support the inclusion of this type of knowledge in a scalable and structured way.

In collaboration with researchers from the Athena Institute, the Social AI group at Vrije Universiteit Amsterdam, and the Dutch National Institute for Public Health and the Environment (RIVM), Lösch analysed online experiences shared on social media, forums, and other digital platforms. The team used natural language processing (NLP) to process and interpret large volumes of textual data.

These digital methods were combined with fieldwork, interviews, and participatory workshops in guideline development processes related to COVID-19 vaccinations, scabies, and transgender healthcare. In the case of scabies, direct patient input led to practical changes in the recommendations.

The findings demonstrate that AI can play a valuable role in guideline development — especially in situations where traditional participation is difficult, such as during health crises or when patient organisations are absent. Lösch will defend her PhD thesis at VU on 9 September.

Read the full article on the VU website: AI helps capture patient and caregiver experience in healthcare