Expert patient insight, from a patient who knows 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. Since then I've watched almost the entire history of disease-modifying treatment unfold, and followed it closely, latterly from inside the research itself.

My career began in pharmaceutical sales and business development, then moved into management consulting. During the dot-com boom I worked around the world as a specialist in high-value sales processes, helping the chief executives of major technology companies, above all IBM, put a single worldwide process in place for managing their sales. Since then it has been a portfolio of commercial, research and patient roles. I know how pharma and technology businesses work from the inside, and I'm as comfortable in a brand planning meeting as in a trial steering discussion.

I hold formal roles on two clinical trials. 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, used alongside specialist neuroradiologists, helps detect MS activity on brain MRI and saves reading time, and how that affects the multidisciplinary team meetings that decide on disease-modifying treatment. I also lead the PPI group for RESTORE, an international consortium co-led by Professor Stefano Pluchino at the University of Cambridge, which is preparing a trial of neural stem cell therapy for progressive MS. That work gives me a working knowledge of how global trials are designed, run and explained to the people taking part.

Three decades across pharma, technology, research and the patient world add up to a network that reaches well beyond MS: chief executives and senior leaders in pharma, senior people in technology and health AI, professors running research programmes, senior figures in the NHS including patient safety, and patient leaders in other conditions, cancer among them. Most of the work follows an old rule of thumb, that if you don’t know how, you should know who. 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 also sit on the board of iAIMS, the international community for artificial intelligence in MS research. 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 where I share research and treatment information with other people living with MS. It keeps me close to what patients are actually asking, worrying about and deciding.

If you work in pharma marketing or medical communications, you’re surrounded by opinions, assumptions and data that tend to agree with each other. PatientSignal gives you something firmer to stand on: a straight view from patients, including what you’d rather not hear, while there’s still time to use it.

Most patient panels are drawn from one place: a survey list, a recruitment database or a single online community. Each brings its own kind of person, and the platform shapes how they talk. Surveys add the Radio 4 listener effect, hearing mostly from people with the time, energy and confidence to reply. I’m not tied to any one source. In MS, through @theMSguide and more than 30 years in the community, I can bring together people from the UK, the US and well beyond: someone who lives on patient forums, someone who has never posted online, and someone who refuses disease-modifying treatment and has little time for the pharmaceutical industry. In other conditions I reach patients through people I trust in those communities, with the same aim: go wide, and go past the usual voices.

Synthetic patients and digital twins have their uses for modelling and early exploration. They can only reflect what they were trained on, though, so the surprises, contradictions and newly emerging concerns still have to come from real people. 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 that you sought out the full range of patients, critics included, and didn’t settle for a convenient sample. That kind of authenticity is hard to get from a large, curated panel.

What you get back is clear about who said what and how widely the view is shared. Use it as it stands in front of a brand team or a trial steering group, without dressing it up or burying it in an appendix. The result is fewer comfortable assumptions, better-founded decisions and work that patients recognise as true.