Patients Know Best has revolutionised the way North Manchester General Hospital provides care for HIV patients

10 March 2017


In 2014, Derriford Hospital in Plymouth became one of the first NHS hospital trusts in the UK to use Patients Know Best’s online patient controlled records system to manage the care of its entire cohort of HIV patients - through a pilot study supported by Janssen, a pharmaceutical company of Johnson & Johnson. Spearheaded by sexual health and HIV consultant Dr Zoe Warwick, today the system is being actively used by well over 300 HIV patients across Plymouth and the South West of England.

Responsible for overseeing the introduction and ongoing roll-out of PKB to Derriford, Dr Warwick was a keen advocate for the deployment and use of PKB – right from the beginning. “PKB goes back to some basic principles of mine – which is why I saw it had such potential,” said Zoe. “Medicine can be very paternalistic – we hold all the records, we write about patients, they don’t own their records and have to apply to have access to their records – I’ve always felt that’s wrong.”

“Sometimes in the NHS we know we can’t really solve the big problems in the system – so we find workarounds. PKB wasn’t like that. It could potentially solve a very big problem. It gives us the potential to work differently and that was the thing for me that kept me advocating for it and persisting.”

Central to Zoe’s belief in the system was the role she saw it could take to positively impact the lives of her patients – albeit for different reasons, as Zoe explains. “My patients can differ extremely. There are those who are very vocal and well informed – they want more control and PKB gives them that. But there’s another group who are the opposite. They’re very disempowered and disconnected from mainstream society. They might not instantly engage with PKB, but they have the potential to benefit from it hugely because they desperately need to have more control over their care.”

Once PKB had been given the green light by hospital administrators, Zoe began the process of introducing the system to her patients – something that quickly confounded her expectations. “I thought I knew who would and wouldn’t want to use PKB – but boy was I wrong!” said Zoe. “Some of the patients who I knew didn’t even have a computer at home really wanted the system. So instead of picking off people to approach to use PKB I just offered it equally as enthusiastically to everyone – and that’s been my approach ever since.” 

Central to Zoe’s success in engaging so many patients has been her enthusiasm for the system and her belief that it can offer real, tangible benefits to patients. Something that comes across with every introduction she does to PKB. “If you want patients to use any new system you need to be enthusiastic. You need to explain to patients why you believe they should use it, why you think using it will be good and what you believe the potential benefits are. That way they’re going to be far more likely to adopt it,” she said.

Now the system is up and running, Zoe and her team are already seeing benefits – both to patient care and to their own time management. Derriford’s HIV team are making particular use of the secure messaging functionality within PKB which means that patients can contact their doctors at a time that suits them. “Understandably, our patients can get very anxious about elements of their condition,” said Zoe. “Before PKB, patients were often reluctant to contact us because they didn’t want to be a bother. Now, patients can send a message in the middle of the night and feel reassured that we’ll answer the next day. Just the act of sending a message can reduce their anxiety.”

Despite giving patients an additional channel of communication to use to reach the HIV team, Zoe has found that lowering the barriers to access has led to fewer messages being left and crucially, improvements to patient care. She said: “When patients feel they can’t get hold of you they panic and that leads to more messages being sent and left. When you lower the barriers to access then people become more relaxed about making contact because they know a channel is there if they need it. That means we get to hear about problems earlier than we would do otherwise and we can catch issues before situations become potentially dangerous.”

“For example, I have a patient who noticed a rash while on holiday and contacted me thinking they were having an adverse reaction to their meds. They were on the verge of stopping their meds altogether and flying home. I asked them to immediately send me a photo of the rash over PKB and was able to tell them it was nothing to do with their HIV medication. Some simple skin cream cleared things up the next day and we avoided the whole situation from escalating.”

Today Patients Know Best is an integral part of Zoe’s work at Derriford Hospital and she is leading the way at normalising the use of PKB in her own specialist department and further afield. “PKB is an essential part of what we do here,” said Zoe. “Every single GP letter gets put on PKB regardless of whether the patient uses the system. They might not engage with it now – but they might in the future. Nurses and pharmacists use the system too and really like it.”

“My ambition is to make PKB a normal part of how we care for people. Our next step is to increase patient education – that’s really important – and integrate the system with our primary care colleagues.”

Dr Andrew Ustianowski at Manchester General

The Regional Infectious Diseases Unit (RIDU) based at North Manchester General Hospital is one of the largest units of its kind anywhere in the UK and offers specialist clinical services to patients across Greater Manchester – and more widely.

Since 2014, the RIDU has been rolling out Patients Know Best (PKB) to its cohort of over 2000 HIV patients – a project led by HIV specialist clinician Dr Andrew Ustianowski and supported by Janssen, a pharmaceutical company of Johnson & Johnson.

Most notably, Andrew and his team are using Patients Know Best to slash the amount of time that stable HIV patients need to spend in clinic – something that’s often welcomed by the patient, as Andrew explains: “When I talk to patients about PKB, one of the things that really switches them on is the idea that using the system might mean they have to spend less time in clinic – that’s something that’s normally of great interest.”

Whilst Andrew stresses that every HIV patient is different and that reducing face-to-face consultation time will only suit some of his patients, he does see that stable patients in particular will reap the benefits of using PKB. “When an HIV patient’s stable we don’t need to see them very often – unless they want to see us. At the moment, they visit us every six months after getting their bloods done. But when a patient is doing well, dragging them into clinic can be inconvenient for them,” he said.

“Why should we force someone to take time off work and come in when it’s 99.9% certain they’ll be fine. And if they’re not fine, then why wait for the six month check-up – come and see me now.”

“For those stable patients who want to, our aim is to drop down face-to-face contact to annual visits and I’m confident that the vast majority of these patients will want this,” he said.

Whilst the process of dropping down the frequency of face-to-face reviews was underway before PKB, Andrew sees that the patient-controlled system enables them to move forward faster with this ambition. Andrew also sees that using PKB gives him the assurance he needs that patients have a secure channel to contact him – should they need it. “I need to feel 100% confident that patients know they have a highly secure route of access and patients must feel sure they can always message me and get a response – PKB enables this,” he said.

Whilst Andrew says that using PKB has certainly made it easier for patients to message him and get in contact, he stresses that he has only had patients reach out to him with legitimate concerns and worries – concerns that would have taken longer to deal with using traditional routes. “Patients often message me with questions that are quick to deal with but are very important to them. If they didn’t have access to PKB their route would either be to phone or to get an appointment to see me – that’s not always a good use of anyone’s time,” he said.

“For example, one patient contacted me though PKB saying they had low grade intolerance to their medicine – in their case repeated stomach upsets. Because their GP didn’t know about their HIV condition they were prescribing medicines that would have reacted badly. Because the patient messaged me, I was able to catch this in time, switch their HIV meds and now they’re fine.”

Improved efficiency all round plus a great response from his patients has meant that Andrew and his team are now hoping to extend the use of PKB and looking for potential areas of integration with the Trust’s systems. He said: “We’re hoping to roll out the system to more of our patients and we’re looking at how we can integrate PKB with our letter and blood results system. Further down the line we want to fully reap the benefits of PKB and integrate our primary care teams – so we have seamless communication between medical professionals and patient.” Author: Dr Zoe Warwick at Derriford Hospital