Jana Bergholtz

Patient Co-Researcher | Centre for Person-centred Care (GPCC) | Institute of Health and Care Sciences | Gothenburg University | Sweden

Jana’s life has been a bit of a roller coaster ride. After having grown up in Eastern Germany, the fall of the Berlin wall opened various opportunities. Jana eventually earned a PhD in Earth and Planetary Science in the United States before returning to Germany to work as application scientist in electron microscopy and X-ray analysis. However, her life changed dramatically in 2017 after moving to Sweden, when she experienced a haemorrhagic stroke caused by a cerebral cavernoma.

During rehabilitation, Jana discovered the healing power of art and the importance of community. Inspired by the work of Connie S. Lee (Alliance to Cure Cavernous Malformation, USA), Jana co-founded a Swedish patient organisation Cavernöst Angiom Sverige (CASE), and helped launch the European Cavernoma Alliance, a network of national Cavernoma patient associations. Recognizing the responsibilities of representation, Jana pursued training as patient representative through Rare Diseases Sweden, EUPATI and Eurordis to strengthen her understanding of medicine development, regulatory affairs, ethics, and – importantly – how to elevate a diversity of voices, especially those less often heard.

Since 2021, Jana has worked at the Centre for Person-Centred Care (GPCC) at the University of Gothenburg. She is part of GPCC’s steering group and leading the centre’s strategic work on integrating patient, family carer and public involvement (PPI) systematically across the centre’s activities and research projects. As patient co-researcher, Jana has contributed to several studies (e.g., a systematic mapping review of PPI in healthcare, core outcomes for the evaluation of new healthcare programmes) and is currently exploring the need for a national online hub for PPI in Sweden.

Jana is excited to build on this foundation at the ICoP-PCP and help shape an inclusive and international community. She firmly believes that through continuous dialogue and collective accountability, we can drive meaningful culture change together and co-create person-centred, reflective, and learning health and social care systems.