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Management, governance and monitoring of National Highly Specialised Care

Through management, governance and follow-up, expertise and resources are concentrated where they can do the greatest good – ensuring that every patient receives the best possible care. Through coordination, quality and continuous learning, we are creating the highly specialised care of the future.

Through management, governance and follow-up, expertise and resources are concentrated where they can do the greatest good – ensuring that every patient receives the best possible care. Through coordination, quality and continuous learning, we are creating the highly specialised care of the future.

Structuring the levels of care within Region Uppsala and Akademiska sjukhuset

Structuring the level of care, bringing together resources and expertise where they can do the greatest good, is under way at several levels. From the political leadership of Region Uppsala to the heads of services, researchers and experts in rare and difficult-to-treat diseases. This work is always based on the same basic idea: that the collective expertise and resources of the healthcare system should be utilised as efficiently as possible based on the needs of patients.

  • The Regional Council has overall responsibility and decides on NHV referral responses and applications.
  • The Director of Health and Medical Services represents the Central Sweden Healthcare Region in preparatoy group 2.
  • The Hospital Director and hospital management are the steering group for the NHV and work strategically and proactively to ensure that the hospital's work with the NHV and the European Reference Network (ERN) continues to develop with high quality.

The NHV administration – support in day-to-day operations

The NHV administration is there to support the organisation in the day-to-day work with NHV and ERN. NHV assignments and ERN membership require the hospital to maintain high quality standards, sufficient patient volumes, conduct research and report its results. The mission is to provide structure, coordination and practical support in areas such as:

  • Representation in expert groups
  • Referral responses
  • Applications
  • Implementation of newly designated care areas
  • Follow-up of ongoing assignments

Together, we aim to make it easier for teams to focus on what matters most - the patient.

Follow-up and quality – learning that drives improvement

NHV Provider Forums are organised to ensure that NHV teams at Akademiska sjukhuset meet the requirements for collaboration, quality, research and reporting associated with their designations. We monitor our work, carry out self-assessments and analyse results with the aim of developing each NHV mission in line with our visions of excellence, learning and improvement.

Every year we report data to Socialstyrelsen's Hugo platform, according to established quality indicators for each area. In this way, we create a transparent and learning structure that benefits both healthcare and the patients.

NHV Provider Forum – a shared forum for learning

Once a year, all reporting NHV areas come together in the hospital-wide NHV-Provider Forum (NHV-UF) – a meeting place for dialogue, learning and improvement. This is where we evaluate results, develop action plans when necessary and share successful practices.

The aim is clear: to ensure quality and compliance – but also to give energy, courage and confidence to all those working in highly specialised care. Because in the end, it's all about the same thing: giving every patient the best possible care – with heart, knowledge and the power to change. 

Updated: 2026-06-18