Swedish Agency for Health Technology Assessment and Assessment of Social Services
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Patient and user involvement
Good collaboration and dialogue with patients, users and relatives is an important part of SBU’s work to get as relevant reports and knowledge base as possible. Different types of dialogues and collaboration therefore occur in many of SBU’s projects. Based on the purpose and needs of the various projects, the collaboration is adapted to, among other things, form, and scope.
SBU is also part of the public cross-agency network for the exchange of user participation, which links to The Council for Knowledge-Based Governance.
Below is a description of the patient and user collaboration that has taken place and ended within SBU’s project during 2025, as well as any other collaboration that has taken place outside specific projects:
The HTA Regulation
In the work on the new HTA regulation (HTAR), SBU has conducted two full-day training courses during the year aimed at patient organizations. From 2025, Joint Clinical Assessment (JCA) of new medicines and medical devices will be conducted implemented at EU level as a result of HTAR. For all twelve JCA cases started in 2025, SBU has contacted Swedish relevant patient organizations with a request to provide input on the scope of what is to evaluate, i.e. the evaluation question in the form of a PICO1. Seven patient organisations participated in the process.
Pharmacological treatment of polycystic ovary syndrome – Health and quality of life in the short and long term
During the initial phase of the project, a meeting was held with a representative of a patient network to discuss the scope and what outcomes, i.e. measures for health and quality of life, which could be considered important to measure from a patient perspective, as well as reflections on ethical considerations.
SBU Report: Pharmacological treatment of polycystic ovary syndrome – health and quality of life in the short and long term .
Psychometric properties for instruments used to measure core outcomes for provoked vestibulodynia: a systematic review
In this international project in which SBU participated, measurement methods for various instruments used in research in provoked vulvodynia, were evaluated. A person with a patient perspective, was included as an expert in the project management. Treatment and social support. In the case of co-morbidity between addiction and other psychiatric conditions within the framework of this project, user interaction was included, in several ways. On the one hand, there were representatives from different organizations in the reference group, and on the other, a representative participated more actively in the design and content of the chapter on ethical aspects for a relevant content that reflects the user’s reality and care situation. The reference group was informed of the progress of the project and was given the opportunity to comment on the content.
SBU report: Diagnostics and treatment of provoked vestibulodynia
Examination of the abnormal number of chromosomes in the embryo in assisted reproduction
In this project, representatives of a national association were engaged to gather views on the project plan and issue and ethical aspects. The representatives also provided feedback on the report from patients and suggested the setting up of an online seminar organized by SBU.
Interventions to prevent and reduce coercive measures in psychiatric care and institutional care of children and young people
During the work on this project, several associations, organizations, and national associations participated in dialogue meetings with SBU. They contributed to discussions about the relevance and boundaries of the issue, key ethical and health economic aspects and continued development efforts.
1. PICO, population, intervention, control, outcome.
