Schizophrenia: Why Lived Experience and Treatment History Matter to Research

Every figure in this guide comes from a published source, linked where it appears and kept in CureCircle's evidence base with the source's own words. It is not medical advice. Read on 7 November 2026.

Living with schizophrenia often means trying several medicines before one works well enough, and weighing what it helps against what it costs: weight, sleep, energy, motivation. What made the difference, a medicine, a person, a routine, a place to live, a job, is known best by the person and by the people close to them. Research on treatment and recovery needs that knowledge, recorded in the person's own words and joined to the treatment history.

How many people live with it

According to the WHO, "schizophrenia affects approximately 1 in 300 (0.29% or 27 million) people worldwide". The Global Burden of Disease study estimated that approximately 1.2 million people worldwide experienced an incident episode of schizophrenia in 2021.

The records worth keeping

NICE's guideline on psychosis and schizophrenia in adults describes the checks that leave records:

• Health checks before starting a medicine: weight, blood pressure, and blood tests for glucose and cholesterol before starting antipsychotic medication, with an ECG where the medicine calls for one.
• The same blood tests afterwards, at 12 weeks, at 1 year and then annually. Together they show how a medicine affected physical health.
• The treatment history: when two medicines have not helped enough, NICE recommends offering clozapine. A record of what was tried, for how long, and why it changed is one of the most useful things you can share.

If you do not have your clinic letters or results, ask your mental health team or practice for a copy.

What sharing it is worth

CureCircle values every contribution with a public benchmark built from what health data has sold for. A complete schizophrenia story with the records the guideline lists comes to about $84 per licence on the benchmark today. With 60 days of mood or symptom diary entries added, it comes to about $268 per licence. Every line and its source is on the schizophrenia page.

A licence is not a one-off sale: the same de-identified story can be licensed to several research teams, and you earn a share each time.

People with schizophrenia are also paid for their time directly: a published listing offered $120 for a 60-minute follow-up interview after a short survey.

On your own terms, and for families

Mental health records are among the most sensitive there are. You decide what to share and read the de-identified summary before anything goes anywhere: no names, no place finer than a country, no exact dates, and you can withdraw at any time. Many people with schizophrenia are supported by a parent, a sibling or a partner, who can share the story of the person they support with that person's permission. The record then notes that a carer told it.

Start your story, or read what your health data is worth first.