Expert patient insight from someone who knows what to ask, and who to ask.

I was diagnosed with MS in 1993. There was no treatment to offer me, no MS nurse to call and barely an internet to search. I’ve followed the field closely ever since, latterly from inside the research.

My career began in pharmaceutical sales and business development, then management consulting. During the dot-com boom I worked worldwide with the chief executives of major technology companies, above all IBM, on how they managed their sales.

Since then it has been a portfolio of commercial, research and patient roles. I’m as comfortable in a brand planning meeting as in a trial steering discussion.

I’m the patient and public involvement (PPI) lead for AssistMS, an NIHR-funded trial led by Queen Mary University of London. It tests whether icometrix’s AI software helps specialist neuroradiologists read brain MRI in MS, and what that means for treatment decisions.

I led the PPI group for RESTORE, an international consortium funded by the Progressive MS Alliance and co-led by Professor Stefano Pluchino (University of Cambridge) and Professor Angelo Vescovi (Abu Dhabi Stem Cell Center). It designed a phase II trial of neural stem cell therapy for progressive MS.

My network reaches well beyond MS: senior people in pharma, technology and health AI, research professors, senior NHS figures and patient leaders in other conditions. A one-person company can open doors that a larger agency would have to knock on.

I’m an Honorary Research Fellow at Queen Mary and sit on the board of iAIMS, the international community for AI in MS. I campaigned successfully for everyone with MS in the UK to be eligible for a Disabled Persons Railcard.

I founded and run @theMSguide, a peer channel sharing research and treatment information with other people with MS. It keeps me close to what patients are asking, worrying about and deciding.

Good pharma marketing and medical communications start with a clear signal from patients. PatientSignal cuts through the assumptions and second-hand data around a brief, and tells you what you need to hear while there’s still time to act.

Most patient panels come from one place: a survey list, a recruitment database or a single online community. You hear mostly from people with the time, energy and confidence to reply, the BBC Radio 4/NPR listener effect.

I’m not tied to one source. Through @theMSguide and more than 30 years in the MS community, I can bring together the person who lives on patient forums, the person who has never posted online, and the person who refuses treatment and has little time for pharma. In other chronic conditions I reach patients through people I trust in those communities.

Synthetic patients and digital twins have their uses for modelling. They can only repeat what they were trained on, though. A small, well-chosen panel is often the quickest way to check whether the model has got it right.

It’s also work you can stand behind. When regulators, shareholders or patients ask how you listened, you can show you sought out the full range of patients, critics included.

What you get back is clear about who said what and how widely the view is shared, and ready to use in front of a brand team or a trial steering group.