Patients Know Best works with Derriford Hospital, Plymouth to transform the care of HIV patients

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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.”

But ultimately for Dr Warwick and her team, using PKB is all about improving the lives of people with HIV and helping them to manage their care better and more effectively.

“If you’re diagnosed early and are on antiretroviral therapy then people with HIV can have a normal life expectancy. If you just want to get on with your life and have minimal contact with us then PKB allows this,” said Zoe.

“It means the string can be let out a little. Patients know they can always contact us and we know they are self managing their condition well – that’s quite transformative to their care.”

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