Time to therapy is not lost once. It is lost in stages
A client needed to understand what was delaying treatment initiation in a rare disease across Germany, France and Italy.
The patient journey in rare disease runs through several hands before it reaches a treating specialist. Each handover is a place where time can be lost, and each one has different causes.
Mapping only the medical steps would have missed most of it. A care pathway includes the people who recognise the symptom and the people who make the referral, not only those who prescribe.
Four kinds of stakeholder, because the delay involves all of them
Interviews covered patients, caregivers, treating specialists and referral stakeholders across the three markets.
Patient research alongside clinician research is what makes the sequence visible. A specialist can describe the point at which a patient reached them. Only the patient can describe what happened before that.
Caregivers were included because in rare disease they frequently carry the continuity that the system does not.
Four stages were mapped consistently: symptom recognition, diagnosis, referral and treatment initiation.
Four stages, and the ones worth intervening in
The work mapped the delays across all four stages of the treatment pathway.
With the delay located rather than assumed, it became possible to say which pathway changes would actually shorten it and which would move time from one stage to another.
The research identified the pathway changes and the support interventions most likely to reduce time to therapy.
That distinction matters in rare disease more than in most categories. A shorter time to therapy is not a marketing outcome. It is the outcome.
