Patient's and researcher's perspectives on patient involvement in research in multiple sclerosis

Patient involvement has increased in recent years and has been requested by both patients and patient organisations, e.g., in relation to prioritising research questions and outcomes. However, when planning new research, patients are not automatically involved.

This study aimed to describe and elaborate on patient involvement in research in multiple sclerosis (MS) from both patients' and researchers' perspectives.

In total, 141 patients with (pw) MS and ten doctors responded to the questionnaires. Patient involvement was considered important by pwMS, mean score 8.9, standard deviation 1.4 (min. 5-max 10) on a 0-10 numeric rating scale (0 = no importance, 10 = very important), and 43% of pwMS answered that they could imagine themselves being a co-researcher.

Patient involvement is considered important for pwMS. This study may serve as a source of inspiration or a guideline for future studies using patient involvement.

The Danish Multiple Sclerosis Society.

Not relevant.