Using AI to Advance Patient-Centred Care: Sahlgrenska Leads International PROM Research Partnership 

The initiative brings together Sahlgrenska University Hospital, Boston Children’s Hospital and Karolinska University Hospital to develop innovative AI-supported methods for analysing patient experiences and strengthening the use of patient-reported outcomes in healthcare and research.

The project has received nearly SEK 1 million in funding from Vinnova, Sweden’s innovation agency. By combining expertise in artificial intelligence, patient-reported outcome measures (PROMs) and international collaboration, the partners aim to create new tools that can help researchers, healthcare professionals, industry partners and policymakers gain faster and deeper insights into patients’ lived experiences.

PROMs are standardised questionnaires that capture information directly from patients about their health, symptoms, treatment and quality of life. They provide valuable insights into outcomes that matter most to patients and are increasingly used to support clinical care, research and healthcare improvement.

The project is coordinated by Michaela Dellenmark-Blom, Associate Professor and Director of the Centre for Patient-Reported Outcomes and Experiences in Paediatric Healthcare at The Queen Silvia Children’s Hospital, Sahlgrenska University Hospital. Having collaborated with the participating organisations for many years, she sees the initiative as a natural next step.

“The fields of PROMs and AI are evolving rapidly, yet many important questions remain unanswered. Addressing these questions has the potential to strengthen both patient health and quality of life. International collaboration allows us to combine data, expertise and experience in ways that no single organisation can achieve alone. By working together, we can transform individual insights into knowledge that benefits patients globally,” says Michaela Dellenmark-Blom.

Exploring AI as a Research Partner 

The project will develop and evaluate a collaborative AI agent designed to support qualitative research. The system will analyse interviews and focus group discussions in which patients describe their experiences of living with a health condition. Based on these analyses, the AI agent will also support the development of questionnaire items for new PROMs.

These questionnaires can help measure how patients perceive their symptoms and the impact that disease and treatment have on their daily lives.

As part of an initial proof-of-concept study, the collaborative AI agent will be developed and tested in both English and Swedish. The study will focus on children born with oesophageal atresia, a rare congenital condition in which the oesophagus does not fully connect the mouth to the stomach.

The project is jointly led by principal investigators in Sweden and the United States: Michaela Dellenmark-Blom and Benjamin Zendejas, Paediatric Surgeon and Surgical Director of the Esophageal and Airway Treatment Center at Boston Children’s Hospital.

“We want to explore whether AI can function as a co-researcher in qualitative studies conducted in different languages, for example by supporting the analysis of focus groups. We also want to evaluate whether a collaborative AI agent can achieve the same level of quality as human researchers while significantly reducing the time and resources required,” says Benjamin Zendejas.

“Healthcare is generating more patient-centred data than ever before, but our ability to analyse that information meaningfully has not kept pace. If collaborative AI can help accelerate qualitative analysis without compromising quality, patient-reported insights can be integrated into clinical care and research much more quickly. This is particularly important for children living with rare conditions.”

Combining Expertise Across Disciplines and Borders

The Centre for AI at Sahlgrenska University Hospital is also a key partner in the project. Magnus Kjellberg, Director of the Centre for AI, highlights the broader significance of the initiative.

“This project demonstrates how we can build national and international research infrastructure around AI and patient-reported outcomes while maintaining a strong focus on patient value. It also shows the strength of collaboration between two centres of excellence within Sahlgrenska University Hospital.”

Karolinska University Hospital is represented by Tomas Wester, Professor of Paediatric Surgery, who has extensive experience of international research collaborations.

“In the longer term, this work may facilitate more structured data collection, improved clinical risk assessment and more personalised follow-up. These developments are particularly valuable for children living with rare diseases and complex health conditions,” says Tomas Wester.

Building the Future of Patient-Centred Research

Although the initial study focuses on oesophageal atresia, the long-term ambition is to develop a collaborative AI platform that can support PROM development and qualitative research across a wide range of conditions, healthcare systems and languages.

The partners believe the project could lay the foundation for new approaches that make healthcare and research more patient-centred, efficient and internationally connected.

“We see significant potential for collaborative AI to support qualitative analysis and PROM development across many different patient groups. Ultimately, this is about strengthening patient-centred healthcare and research, both in Sweden and internationally. We are grateful for the support from Vinnova and proud to be working together with such strong partners in this Swedish–American collaboration,” says Michaela Dellenmark-Blom.

Partners

The partnership brings together Sahlgrenska University Hospital, Boston Children’s Hospital and Karolinska University Hospital, together with their affiliated academic institutions: the Sahlgrenska Academy at the University of Gothenburg, Harvard Medical School and Karolinska Institutet.