Patient-expert partnerships in research: how to stimulate inclusion of patient perspectives.

OBJECTIVE To gain more insight into exclusion mechanisms and inclusion strategies in patient-expert partnerships. BACKGROUND Patient participation in health research, on the level of 'partnerships with experts' is a growing phenomenon. However, little research is conducted whether exclusion mechanisms take place and to what extent patients' perspectives are included in the final outcomes of these partnerships.

Patients' priorities concerning health research: the case of asthma and COPD research in the Netherlands.

Background: Although patients are increasingly involved in agenda setting within specific fields of health research, they rarely participate in decision-making on the entire breadth of health research, including biomedical research. This might be attributable to a widely held view that patients are incapable of adequate research prioritization due to a lack of relevant knowledge, a failure to look beyond their own individual problems or an inability to objectively consider long-term targets.

Aims: By conducting transparent and structured consultations with asthma and chronic obstructive pulmonary disease (COPD) patients regarding their health research priorities, we aim to assess the ability of patients to prioritize research in a well-argued way.

The experiential knowledge of patients: a new resource for biomedical research?

Both governments and patients' movements are increasingly making a plea in favour of the active participation of patients in biomedical research processes. One of the arguments concerns the contribution that patients could make to the relevance and quality of biomedical research based on their 'experiential knowledge'. This article reflects on the validity of patients' experiential knowledge in the context of biomedical research processes.