How to share your experience:
1. Know the purpose of sharing your experience. How will this be used? Who is the audience?
2. Make sure you only share what you feel comfortable to. Reflect on what you are sharing. Is it sensitive or emotional information?
3. Make sure the environment is safe and non-judgemental.
4. Make sure you feel respected and empowered.
Patients can share their experiences to researchers in many ways. For example:
- Structured interviews or focus groups
- Patient-reported outcome measures
- Surveys and questionnaires
- Patient story telling through writing, audio, or video
- Involvement in research design
- Patient advisory boards
Further resources: