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

INTRODUCTION

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.

METHODS

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

RESULTS

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.

CONCLUSIONS

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.

FUNDING: The Danish Multiple Sclerosis Society.

TRIAL REGISTRATION: Not relevant.