Patient perspectives on centralisation of low volume, highly specialised procedures in Sweden

•This study explores important considerations in decisions regarding centralisation of specialised health care services.•Quality of care was assessed to be the most important factor in decisions regarding centralisation of low volume, highly specialised health care.•Continuity of treatment and a well-functioning care pathway are highly important for patients.•Patient engagement and patient association involvement in the centralisation process is likely to be a key component in attaining patient focused care.

This study explores important considerations from a patient perspective in decisions regarding centralisation of specialised health care services. The analysis is performed in the framework of the Swedish National Board of Health and Welfare's ongoing work to evaluate and, if appropriate, centralise low volume, highly specialised, health services defined as National Specialised Medical Care. In addition to a literature review, a survey directed to members of patient associations and semi-structured interviews with patient association representatives and health care decision makers were conducted. The results showed that from a patient perspective, quality of care in terms of treatment outcomes is the most important factor in decisions regarding centralisation of low volume, highly specialised health care. The study also indicates that additional factors such as continuity of treatment and a well-functioning care pathway are highly important for patients. However, some of these factors may be dependent on the implementation process and predicting how they will evolve in case of centralisation will be difficult. Patient engagement and patient association involvement in the centralisation process is likely to be a key component in attaining patient focused care and ensuring patient satisfaction with the centralisation decisions.