I STARTED writing these columns because I am on a world-wide experimental trial to discover if there is a new, better drug to treat leukaemia.

The columns were a protest against the lack of information available to patients. There is almost no connection between the end result of a trial printed in a few antiseptic paragraphs in medical journals like The Lancet and what happens on the coal face of the disease.

My argument is that for far too long medical treatment has been controlled by the medical profession for the convenience and benefit of the medical profession. Patients are onlookers and certainly not central to decisions about treatment and research.

The medical profession has this valuable resource to help them improve treatment – the patients – and they should be listening to their patients and putting them at the centre of decisions and development, but they don’t.

That may all change if one member of the medical ‘establishment’ gets her way. Noemi Roy has been charged with setting up the Oxford Blood Group. They may need to do something about the name – Patient Power or Snap, Crackle and Pop! come to mind – but now it’s called the Oxford Blood Group with a launch date of May 23.

She is after nothing less than a revolution in patient involvement.

“We need to dismantle the relationship between doctors and patients and put them on an equal footing. They should be equal partners.”

The launch of the Oxford Blood Group is not in some intimidating hospital auditorium but in a neutral location, The Ultimate Picture Palace in Jeune Street, East Oxford, at a free screening of a film about patient power called People Are Messy, and the moderator to this food, drink and discussion evening will not be some scientist or doctor in a white coat but the maker of the film.

Here are some responses to previous showings of the film: “A true reflection of the many emotions that patients, carers, health care professionals, family and acquaintances go through when a single member of that unit is diagnoses with a critical illness”; “Each screening had a profound effect on the audience…and is testament to how wonderful this drama is. I hope that many, many people have the chance to witness a uniquely powerful film very soon.”

The signals are clear. This is a distinct departure from the old ways of working and thinking. In the past, doctors and scientists established the goals and aims of research and usually these were about increasing the overall survival rates. But maybe patients prefer to search for less toxic treatment or less time in hospital.

At the launch of the Oxford Blood Group on May 23, there will be doctors and scientists and researchers on hand but also members of the public, including the public who pay for private treatment. One of the questions might be ‘If treatment in the private sector is better than in the public, NHS provision, is that all down to money alone?’.

The doctors, scientists and patients will be asked to come out with ideas of how to involve more people in more research, and how to tell the public what happens in trials like the one I’m on. If you ask a member of the public what happens in trials and how many are currently going on, they wouldn’t be able to tell you that in Oxford there are usually about 70 trials going on at anyone time and they probably will not know how they or their loved ones can enrol in a trial

On the May 23 launch, the plan is to see if common themes emerge and to find out what is important to patients in Oxford and ask them directly what they want and redesign studies. The views of Oxford patients, doctors and scientists will be tailored to amplify the Oxford voice – if there is one.

Put the date May 23 in your diary if you want to be there when the starting gun of a revolution kicks it all off. As Noemi points out: “It is not only right to do it, but more patient involvement will also make research better. It’s also very rewarding for patients who take the time to et involved because people are changed by the process.”

It’s a free, win-win game, May 23, 6-8.30pm at the Ultimate Picture Palace. The film starts at 6.30pm. It ends and the question-and-answer session begins at 7.30pm. Any questions email oxfordbloodgroup@ouh.nhs.uk