Southampton-led digital follow-up revolutionising care for prostate cancer patients

The pioneering development gives men access to view their PSA blood test results as soon as they are uploaded by the lab, as well as complete assessments, view patient information and message their clinical team – removing the need for routine appointments unless essential.

They also take part in a workshop and are given a dedicated support worker to help them manage their care.

Following the success of My Medical Record, a personal online health record developed at University Hospital Southampton, it was adapted in partnership with the TrueNTH programme, a global initiative led by the Movember Foundation, to improve critical areas of prostate cancer care.

As part of a national trial funded by Prostate Cancer UK, the self-management model was introduced at UHS and four other hospital trusts across the country, with its implementation evaluated by the University of Southampton.

In results published by the journal BMC Cancer the study, which ran for three years and involved 2,675 men and 250 workshops, showed that outcomes were the same or even better for men than traditional follow-up care, with lower per patient costs.

Although clinical teams initially had concerns about patients having access to results before clinicians had assessed them, the project showed men were not adversely affected even if their test results were abnormal.

Within the prostate cancer service at UHS, where the solution is used for surveillance, test results, patient information, signposting and interactive web access to the clinical team, a specialist cancer nurse can remotely review 20 patients per hour – who do not then need to attend a clinic appointment – compared to six in a traditional outpatient setting.

Eric Hounslow, 71, from Romsey, who took part in the self-management trial at UHS, said: “My first cancer, which was unrelated, was kidney cancer. I had surgery six years ago and it went well but my follow-up care was under the old scheme where you had to wait to find out any results.

“It’s an extremely tense time because so much rests on what they’re going to tell you. You’re praying for good news but waiting a week or more to find out.

“Now I can give my blood at 9am and have the results later that day, saving me from all that stress every six months. As someone who has experienced both systems I’d recommend this scheme to anyone.”

To deliver the new model of care, three innovations were needed – a new support worker to support men without adding to demands on clinical staff, the supported self-management workshop to ensure men fully understood the scheme and their treatment and an IT service which allowed them to access their PSA test results remotely.

Alison Richardson, professor of cancer nursing and end of life care at the University of Southampton and chief investigator on the study, said: “The management of follow-up for men who have prostate cancer varies widely, with many men worrying while they wait for their PSA results, unsure of how to access support if they have any problems as a result of their cancer and its treatment.

"If implemented properly, this model gives men back control over their own follow up while ensuring they can still access the support and care they need.

“That’s why it is so important that NHS trusts take into account the three key elements that make this model work. Without preparation for supported self-management through the workshop, access to a support worker and a well-functioning IT platform, men will find it difficult access the standard of care they need.”

This project is one of a number of digital innovations at UHS and ties in with the ambition announced in the NHS long term plan to digitalise support for men with prostate cancer, providing more tailored post-treatment care.

Kevin Hamer, programme manager for My medical record at UHS, added: "We were delighted to be part of this important project which is based on our My medical record model and has demonstrated such clear benefits to patient care and experience.

“We continue to expand its use in more specialties, as well as discuss the possibility of providing services to other trusts in England, and we are very excited about the potential our system has to improve healthcare nationally, such as it has in this case."