From NIHR governance gaps to the Patient-Led Research Collaborative - why the fix isn't more involvement, it's different standing. Series: Letters to the System · Letter 3 of 6 To: Stroke and neuroscience researchers running PPI panels PPI panels operate on a familiar sequence. Researchers design a study. They write the protocol. They submit the ethics application. At some point in this process — usually after the study design is fixed — they invite people with lived experien

Direct-to-patient sales are booming - but patient engagement teams still treat patients as data, not customers. A stroke survivor's case for co-design in pharma. I was sitting in a conference room in London, half-listening to a panel called “The Patient Voice in Action.” Every speaker on that stage worked in patient engagement. Every single slide was about a drug. Adherence to a drug. Trial recruitment for a drug. A “patient journey” that existed to get someone onto a drug an

The economic case for lived experience has already been made - just not here, yet. The meeting wasn’t unkind. They rarely are. The patient voice tends to be item seven on the agenda, somewhere between communications update and any other business. Eighteen months on from the stroke, in one of the research institutions that has invited me in as a lay stakeholder, I have been in enough of these rooms now to know that the slot on the agenda is the slot in the structure. Item seve