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Connected data: Improving patients’ experiences

by Joanne Sweeney
Published on 18 April 2019

To celebrate the start of Experience of Care Week 2019, Cerner shares stories of patients and carers whose day-to-day lives have been improved by the empowerment, support, and communication that comes from connected information.

It’s amazing how simple things can immeasurably improve the lives of patients and care recipients. Things that might seem unremarkable to outside observers can make a world of difference to those undergoing stressful or traumatic experiences as a result of medical treatment.

This blog is focussed on those who have seen up close the benefits of real, patient-focused connected care.

Trevor’s story – No more anxiety after cancer treatment

For Trevor Stiles, the ability to check his blood test results online has, in his words, “greatly improved” his quality of life. To most, this development simply means saving time. But it lifted Trevor, a recovering prostate cancer patient, out of a familiar cycle of anxiety and fear.

Following his cancer diagnosis in 2014, Trevor received excellent NHS care from specialists at Arrowe Park Hospital in north west England. While the procedure to remove his prostate helped to remove the immediate threat of the cancerous cells, the 59-year-old continues to require regular blood tests to check that he remains cancer-free.

Until recently, these tests were accompanied by a hospital appointment – a source of great stress for Trevor, causing him to relive the emotions that accompanied his original diagnosis.

Trevor explains this routine: “Every six months I give a blood sample. I wait two weeks for my appointment, and then as the date gets nearer for me to go back to the hospital, my stress levels begin to rise.

“I begin to think more and more about the fact that I have had cancer. On the day of my hospital appointment my wife always books half a day off work so she can drive me to the hospital.

“We make the same journey we did in December 2014, when I was first told that I had prostate cancer. We go to the waiting room in the urology department, the same room I sat in before I was given my diagnosis. Everybody looks pretty worried.

“Eventually we’re called through to the consulting room. The same room where I was given my life-changing news. By this time the little voice in my head [telling me the cancer may have returned] has got louder.

“But the nurse is brilliant. As soon as she walks through the door, she tells me that my prostate-specific antigen (PSA) levels are fine. Within a couple of minutes, we're on our way home. My life can begin again. Five and a half months later, the cycle restarts.”

Last May after he was once again being given the all-clear, Trevor was introduced to Cerner’s Patient Portal. When it was explained to him that he could use the portal to quickly check his test results, he jumped at the chance. 

“Those two weeks of waiting; the stress of revisiting the room where I was given my diagnosis - all that's gone now, thanks to the Patient Portal.

Trevor’s story – No more anxiety after cancer treatment

Trevor sharing his #expofcare at Cerner’s European Collaboration Forum 2019

“I logged on, set myself up with a password and delved in. Sure enough, there were all my results. And sure enough, my PSA results were 0.00. That was good. Also in there was all of the correspondence between my consultant and my GP right from diagnosis through to being discharged. It even showed my blood group,” he explains.

“Unfortunately, it even showed my weight,” he adds, ruefully.

Trevor was told that in future once his blood sample had been processed, he would receive and email telling him that his PSA results were available to view.

“No need to wait two weeks, no need for my wife to book time off. No need for a return to hospital, to the waiting room, to the consulting room. My results would be available almost immediately.” 

“I cannot emphasise how much the patient portal has improved the quality of my life. Those two weeks of waiting - the stress of revisiting the room where I was given my diagnosis - all that is gone now.

“All I have is to do is wait 24 hours, and I can live with that.”

Susan’s story – More time to care for loved ones 

Susan Wilson’s mother had what Susan refers to as a “good death”.

“I know that sounds like a strange thing to say, but when you see a loved one suffer and die, you know the difference. She died peacefully in a calm and caring environment. She did not die alone,” Susan says.

Bridget Wilson, known affectionately to friends and family as Myra, passed away on Sunday 19 November 2017 at St Joseph's Hospice in East London aged 84.

Despite the enormous pain Bridget encountered in the final year of her life – the result of an inoperable tumour on her right lung – Susan is full of admiration for the palliative care given to her mother by NHS clinicians and her hospice. 

For Susan, being her mother’s principle carer involved having to explain Bridget’s story every time they met with a care professional, particularly when it came to explaining her mother’s NHS care to hospice staff.

Susan’s story – More time to care for loved ones

Susan and her mum, Myra

Susan explains: “I kept good records of my mum's health problems, her hospital visits, her test results, and anything else that was relevant - even before the cancer came.

“However, not everyone is in a position to do that, and to be honest when it comes to explaining what has happened medically to a person you can’t provide every bit of information that is needed.

“Pretty soon I was navigating the NHS, with all its bureaucracy and delays. It's not their fault - after all they're in the business of keeping people alive who stand a pretty good chance of staying that way. It is the hospices that take care of people with either a terminal illness or a life-limiting condition. They are the ones best qualified to help at what is a very difficult time.”

But a crucial turning point came in October 2017 when a senior palliative care consultant introduced her to Cerner’s Health Information Exchange (HIE).

That month Bridget began to develop a constant headache. Dr Sam Edward, then the head consultant at Bridget’s hospice, was keen to identify the cause of the headache and to improve her pain management.

“[Dr Edward] was a champion of the Health Information Exchange, which acts as an interface between the various medical databases operated by the NHS and the hospice's own electronic records. It enables the hospice staff to access medical histories quickly so that appropriate decisions can be made with regards to ongoing care,” Susan explains. 

Dr Edward liaised with Bridget’s NHS Hospital and a CT scan was soon arranged. But Susan couldn’t secure an appointment to discuss the results with her mother’s consultant in a reasonable period – nor, by this point, was her mother able to travel.

Dr Edward explained how, with Susan’s permission, she could use HIE to access the results immediately. Susan swiftly agreed.

Susan picks up the story: “Thankfully the scan turned out to be clear, so Dr Edward was then in a position to look at other causes for my mum's headache. At last I had somebody who could step in and pull everything together on the medical side. All the tasks relating to the NHS, which I'd been juggling myself, could now be delegated to the hospice.”

It takes time to gain access to medical data from the NHS's various databases. Time that is so precious when someone is dying. With the sharing of data, time is never lost.”

For Susan, HIE enabled the hospice to raise the level of its care from what she calls “generic excellence” to “tailored excellence”.

She adds: “When you are looking after someone who is terminally ill, you don't realise how much physical, mental, emotional, and psychological energy this requires. Anything that allows you to focus totally on your role as carer, to the exclusion of all else is welcome. You want to be in a position to do the absolute best you can.

Susan recounts the last days of her mother’s life: “I rang the hospice and spoke to one of the palliative nurses. My mum was admitted two days later. Her levels of pain relief were increased dramatically under the hospice's careful supervision. She lived her last days in relative comfort. Of course I was able to be with her right to the very end.”

“The Health Information Exchange took away the need to explain to hospice staff what had been happening medically in the NHS sector because they could access the data themselves.”

“It takes time to gain access to medical data from the NHS's various databases. Time that is so precious when someone is dying. With the sharing of data, time is never lost.”

Join the conversation on Twitter and share your experience of care using #ExpofCare (hyperlink to www.twitter.com/cerneruk).


About Joanne

Joanne Sweeney

Jo is passionate about empowering patients and citizens by improving their access to information, and helping them manage and improve their health behaviours. As clinical consultant in population health, focussed on on Cerner’s citizen portal, Jo helps organisations to focus on the way that patients experience and engage with their care. Previously, Jo worked as a psychologist within the NHS, helping people to better manage both the physical and psychological demands of long-term health conditions.

About Patient Experience Week (source: The Beryl Institute)

Patient Experience Week 2019 is an annual event to celebrate healthcare staff impacting patient experience everyday. Inspired by members of the Institute community, Patient Experience Week provides a focused time for organisations to celebrate accomplishments, reenergise efforts and honour the people who impact patient experience everyday. From nurses and physicians, to support staff and executive professionals, to patients, families and communities served, the Institute hopes to bring together healthcare organisations across the globe to observe Patient Experience Week.