ArticleBMC health services research2026
Primary and secondary patient participation - a qualitative study of healthcare professionals' perceptions and experiences.
Article in BMC health services research, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
0 citing papers in PubMed.
No citing paper in PubMed yet.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPatient participation is increasingly emphasized in healthcare policy and practice, still less is known about how healthcare professionals (HCPs) perceive and experience patient and informal caregiver participation. Patient participation as a concept is described as sharing something in a partnership, such as a shared decision. Meaningful participation requires bridging the knowledge and power gap between HCPs and patients. The aim of this study was therefore to contribute to the conceptualization of patient and informal caregiver participation based on HCPs' experiences and perceptions.
methodWe conducted an inductive thematic analysis of qualitative data from open-ended responses and comments in a national web survey in Sweden. The survey explored attitudes toward patient participation and workplace support for collaborative practices and was completed by 279 participants, whereof 247 (89%) responded to at least one open-ended question or free text comment.
resultsTwo overarching themes were generated. Primary participation refers to how patients and informal caregivers manage their own health at a micro level in society. Secondary participation refers to an organizational level in society, to influence the healthcare system and support peers at macro and meso levels. HCPs valued well-informed patients as partners but expressed concerns about misinformation, workload, and health inequities. Digital tools were seen as enablers of participation, though usability and organizational readiness posed challenges. Secondary participation was perceived as beneficial but hindered by structural barriers, lack of management support, and limited resources.
conclusionHCPs generally supported patient participation, however, they faced systemic and practical obstacles. To foster meaningful collaboration, healthcare organizations need structured forums, training, and strategies to integrate patient knowledge at both individual and organizational levels. Future research should explore interventions that strengthen shared learning for patients and informal caregivers.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.