Patient Expert Involvement – Why Bother?
“Clinicians and scientists involved in research know all that is currently known about Ewings Sarcoma, and understand what still needs to be explored, so why bother to involve patients? To keep it simple, keep it relevant and keep it moving. If those experts can’t explain what they are doing and why, to those whose lives have been directly affected, then something has gone astray. Researchers always have to be accountable to funding bodies, but more importantly they are accountable to those who experience the disease. Its not easy, and doesn’t feel a comfortable mix (yet) but patients have earned the right to question why it all progresses so slowly, why trials have to be so complicated, why every patient treatment is not used as a learning opportunity, by being so directly involved.
June Robson (osteosarcoma patient) February 2016