Lived experience is information

The data existed before anybody thought to call it data. People have been living through medication changes, late recognition, sleep collapse, sudden clarity, and the long tail of a reduction for as long as the medicines have existed. Most of that record has been asked to dissolve in the waiting room.

This site will not present lived experience as “low-quality evidence” in a dismissive pyramid. A pyramid that only ranks methods by how well they answer a population treatment question will always look down on a diary. That is a failure of the pyramid, not of the diary.

Different methods, different questions

• RCT — does treatment outperform placebo on average?
• Registry — what happens across large populations?
• Qualitative research — what does the experience feel like?
• Pharmacovigilance — what unusual events are being reported?
• Personal timeline — what happened to this individual, and when?

Price, Cole and Goodwin (2009) did not need a thousand-person trial to establish that emotional blunting is a thing some people on SSRIs can describe with precision. Raymaker and colleagues (2020) did not need an incidence rate to make autistic burnout speakable in a clinic. Those papers still have limitations. Limitations are not a licence to ignore them.

See the demonstration observatory