Improving care for Leukaemia patients in Oxford University Hospitals

Cancer patients in Oxford are benefitting from a medical records system which provides them with more support outside of the clinic and in the community.

Professor Anna Schuh, a consultant haematologist at the Oxford Cancer Centre, which is based at the Churchill Hospital in Oxford, began using Patients Know Best, a patient-controlled system in 2015. Professor Schuh is a leading authority on the treatment of chronic lymphocytic leukaemia (CLL) – the most common blood cancer in the Western Hemisphere.

Her haemato-oncology research centre is part of Oxford University Hospitals NHS Foundation Trust. Oxford University Hospital’s Haematology Department Works with PKB to Improve Care for Leukaemia Patients.

Whilst CLL is a serious condition, it manifests differently in different patients and with the advances in therapy, many patients can live for long periods of time in remission without the need for intensive medical care.

However, they still need regular monitoring and require specialist opinions on a range of complications associated with CLL. It is for this reason that Anna and the Oxford team initially chose to work with Patients Know Best. As Anna explains:

“We don’t necessarily need to see our patients in clinic if their condition is stable but we have a tendency to call everyone to the hospital – regardless of the complexity of their condition. That is often very inconvenient for the patient and it places a huge pressure on the haemato-oncology department.”

“Whilst we can discharge stable patients back to their local doctors, GPs can understandably feel uncomfortable managing leukaemia patients and the patients themselves feel increasingly uncomfortable being treated by an unfamiliar, non-specialist doctor”.

“We wanted to use Patients Know Best so that the hospital team has a direct link to the patient and to other healthcare providers and even family members, so we are able to provide specialist care in the community and at home.”

74 of Anna’s patients are actively using PKB to manage their conditions remotely. The patients receive their laboratory blood results at home, attend virtual clinics and complete online consultations before attending clinics – saving time and money.  

The PKB portal makes sure that every patient knows how to contact their specialists should there be a problem and are given guidance on what symptoms to look out for.

Using PKB also enables patients to document any side effects with treatments and therapies – so doctors are kept better informed and there is a robust trail of all correspondence. Plus it gives the haematology specialists a more rounded view of their patients’ care as it enables them to understand precisely how other specialists are treating them.

“We have a lot of patients who are have highly complex conditions and are treated by several specialists – this can make communication very difficult. But when the patient can invite clinicians to view their health record – we can see what other clinicians are saying to them and prescribing – and that’s very helpful,” said Anna.  

The fact that PKB can join together different medical specialists around a single medical record for each patient had a highly practical application over the 2016 Christmas holiday period, when a patient contacted Anna concerned about the rash that had appeared. Anna explained:

“When the patient contacted me, I was worried that the rash could be a side effect of a new treatment plan – but they lived a distance away and would struggle to make their way into clinic. So, I asked the patient to take a picture of the rash on their iPhone and send me a picture securely through PKB – which he did.”

“When I saw the picture, I didn’t think it was drug-related but wanted a specialist opinion. So, I encouraged the patient to invite our dermatology team to view the photo through PKB, too. We quickly realised that it wasn’t serious. We suggested the patient invite his GP onto PKB and ask them to prescribe a simple skin cream.”

“Using PKB in this way prevented the patient from having at least three trips to the hospital. This saves our time, their time – and most importantly, saves them significant distress and worry.”

Whilst Anna still sees significant challenges in encouraging people unfamiliar with PKB – both patients and clinicians – to use the system to its fullest potential, she does have high hopes that in time, the system will improve patient care and save time. She also sees that the system needs to be adapted for each disease area – something Anna and her team has been concentrating on since early 2016.

“Healthcare systems across the world are under significant amounts of pressure and I believe the only way to alleviate some of this pressure is to use informatics and systems like PKB to transfer more care back into the community,” said Anna.  

“Patients with cancer merit access to specialist opinions and continuity of care. Not having this can be a traumatizing experience – both for the patient and for the healthcare teams involved. When one of my patients contacts us through PKB, they know they’re getting specialist advice – and that is very meaningful to them.”​

“Putting the patient back in control is a very good thing and isn’t something patients or clinicians should be concerned about,” she said.

Approved 1 February 2017.