HS Voices Connect Japan is run by people living with hidradenitis suppurativa (HS). We aim to share patients' experiences with healthcare professionals, researchers, and the wider community.
Here we outline our approach and potential areas of collaboration for clinicians, researchers, and supporters.
Our role
HS Voices Connect Japan does not intervene in clinical decisions or treatment plans.
Our aim is to organize patients' experiences of daily life and treatment so they can inform healthcare professionals, researchers, and people involved in policy.
Open full-size diagramSharing patient experiences
Listen · organize · share
- Respect each person’s wishes
- Protect anonymity
- Agree on what can be shared
- Clinical care
- Research
- Policy
Shared for agreed purposes.
Our approach
We believe patients' experiences are valuable when considering healthcare and research.
We respect clinical judgment and research expertise. We aim for dialogue that considers both patient and professional perspectives.
We hope to build relationships in which patients' experiences and professional knowledge are shared, and both sides can learn.
Handling information
The person's wishes
come first
- Careful protection of anonymity and privacy
- Clarity about intended use and what will be made public
Participation in research or surveys must be grounded in ethical considerations. We support gradual, voluntary involvement.
Areas for potential collaboration
- Sharing patient perspectives in clinical care
- Exchanging views while research questions are being developed
- Organizing information about everyday life and individual circumstances
- Sharing challenges in policy and support systems
We do not endorse particular treatments or viewpoints.
What matters in collaboration
We hope patient voices can inform clinical care, research, and policy discussions.
Please feel free to start with a small discussion or an exchange of information.
Get in touch
We welcome inquiries about research, surveys, and information sharing. You can contact us even if your plans are still taking shape.
This document outlines HS Voices Connect Japan's activities and approach to collaboration. It may also be shared within healthcare and research institutions.
Organization overview (PDF)We plan to update this document periodically.
