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Lived experience is a form of expertise that can strengthen research.

Patient involvement should be meaningful from research conception through to publication.

Patient authorship should reflect meaningful intellectual contribution, not tokenistic involvement.

I've been thinking a lot recently about who gets to own knowledge. It might sound like an odd question, but bear with me.

Throughout my career, I've sat in countless meetings discussing patient-centred research, patient engagement and co-production. I've watched researchers genuinely strive to involve patients more meaningfully than ever before, and that is something to celebrate. We have come a long way.

But then the paper is published. The author list is made up entirely of academics. The patients—the very people whose experiences shaped the research—appear, if they're lucky, in a short acknowledgement at the end.

And I can't help but wonder whether there is something fundamentally inconsistent about that. And I suspect I will have been guilty of this myself during my publishing career.

Let me be clear. I am not suggesting that every patient involved in research should automatically become a co-author. Nor do I think authorship should be awarded because it feels like the right thing to do.

Academic authorship matters. It carries responsibility as well as recognition.

In my book Life After Encephalitis, I recount the story of when I had been writing a book review which was a wife’s account of her husband’s brain injury. In the review, I stated the book was “a great addition to the brain injury literature.” I was asked to change this because........

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