BPC’s live prostate cancer results centre is shortlisted for a prestigious HSJ Award

A unique initiative by the Birmingham Prostate Clinic which enables patients to report and track their own results has been short-listed for a prestigious Health Services Journal (HSJ) award.

BPC’s Live Prostate Cancer Surgery Results Centre has been shortlisted in the category for ‘Enhancing care with data and information management’.

The highly regarded awards had a record response, with more than 1,000 entering and only 130 making the shortlist. The winners will be announced at a ceremony in November.

BPC surgeon Alan Doherty, who came up with the original idea for the live prostate cancer results centre and led its development, comments: “We have always felt this was something important and new for patients.

“For the first time, rather than asking patients for information which the surgeon keeps, then eventually publishes in an academic journal, we are giving patients control of the information – they report it and they can see how they are getting on in comparison with other patients. This is all freely available on our website.

“This is important because there it is very hard for patients with prostate cancer considering surgery to get accurate information about outcomes.

“There is no standard system of reporting results and most surgeons do not publish their results.

“Among those that do, surgeons use different definitions of the side-effects of surgery, particularly erectile dysfunction. So it is hard for patients to find accessible, understandable information.”

Every year, 32,000 men in the UK are diagnosed with prostate cancer. There are many different treatment options for early disease. The complete removal of the prostate, known medically as a prostatectomy, offers very good cancer clearance rates.

However, the procedure has been associated with long term erection and continence problems. This is because the nerves controlling erections run adjacent to the prostate and traditionally, when the prostate was removed, these nerves were badly damaged. The operation also weakens the area around the bladder.

Mr Doherty was one of the first surgeons who developed a new approach, called a nerve-sparing prostatectomy, designed to clear the cancer but also spare the nerves.

He has now carried out a total of 1,800 prostatectomies, one of the highest caseloads in the UK. He was recently voted one of the top 10 UK prostate cancer surgeons in a poll of consultant urologists, with his commitment to published results cited as one of the key factors.

All patients are now invited to contribute to and join the Live Prostate Cancer Results Centre, which is located on the Birmingham Prostate Clinic website. They then report their erectile and continence function at three months, six months, nine months and one year.

They are each given a reference number, so their confidentiality is fully protected, but ensure they are able to identify their own results.

To make the data accessible and easy to understand, outcomes are grouped into colour categories, based on traffic lights.

Patients can see the current status of all the other patients taking part in the results project.

“This is important, because if patients are having little erectile recovery at three months and are feeling despondent about it, they can see the recovery of other patients further down the line,” explains Mr Doherty.

“This is very different to a study – it is not a ‘snapshot’ of a selected group of patients over a limited period of time. It is a continuous process to give patients more control over their recovery and information and to help me better understand my results and continuously strive for improvement.”

While many entrants in the category for Enhancing care with data and information management have had the support of large IT departments, this initiative was delivered by the Birmingham Prostate Clinic team of Mr Doherty working with a clinic-co-ordinator and web designer.

“It took five months and involved a great deal of agonising over how we can create something which is quite complicated from a data point of view but needs to be very clear and accessible from a user’s point of view,” said Mr Doherty.

The final system has been set up to allow the clinic co-ordinator to input results from the questionnaires filled in by patients and sent to her. As soon as the co-ordinator inputs this information, it is incorporated into the results centre and published on the website.

“This ‘live’ aspect is very important,” says Mr Doherty. “Patients can see their own status and that of all other patients as it currently stands – not read a study about patients treated five or ten years ago.”

Mr Doherty has spoken to colleagues encouraging them to use the same system for recording and publishing their results.

“I would love to see the system taken up widely, so patients have a more meaningful way of comparing results and more broadly, so that it becomes the norm for surgeons to make their results available to the public in a clear and accessible way.”