Patient Journey provides clarity and support for breast cancer patients at Kent Oncology Centre

The Kent Oncology Centre supports patients living with and beyond breast cancer through the Patient Journey app. Through this app, patients can access information at any time about their diagnosis, treatment and the next steps in their care pathway. It offers clarity, structure, professional credibility and reassurance at a time of considerable uncertainty.

According to Breast Cancer Now, around 55,000 women and 400 men are diagnosed with breast cancer every year. This marks the start of a stressful and uncertain period, often filled with questions about the future. Due to the emotional challenges that come with the diagnosis, patients often find it difficult to fully process the information provided during hospital visits.

Clear and supportive information

At the Kent Oncology Centre, which provides some of the best cancer care in England, staff use the Patient Journey app to inform patients. The application first came to the hospital’s attention when Consultant Clinical Oncologist Dr Russell Burcombe received an email about it. ‘One of the biggest challenges in breast cancer care is providing patients with enough up-to-date information without overwhelming them’, says Russell. ‘I have always firmly believed that patients deserve high-quality information. The email about Patient Journey caught my attention because the application promises exactly that.’

As Russell explored the app further, he became increasingly enthusiastic about its potential. ‘I always wanted the information provided to cancer patients to be clearer and more supportive. Patient Journey can genuinely make this happen. As a trustee of the charity fund of the Kent Oncology Centre, I proposed that we start working with this application, and that set things in motion.’

Consultant Clinical Oncologist Dr Russell Burcombe.

Leaflets and information overload

Before the introduction of the Patient Journey app, the Kent Oncology Centre mainly used printed leaflets to inform patients. ‘Many hospitals still work like this — the old way,’ says Russell. ‘They use a very comprehensive and well-written library of information. They print out the relevant documents and hand them to patients. But such a volume of information can be overwhelming. And, of course, you might not want to be confronted with that information at certain times. One of my patients once said, “I’ve put it in a cabinet because I didn’t want my children to see the leaflets.” Another problem is that leaflets can easily be misplaced, and then you cannot find them again.’

The pandemic’s one positive

Claire Ryan, Consultant Nurse for metastatic breast cancer at Kent Oncology Centre, reflects on when the hospital first began using the application. ‘During COVID-19, we suspended many treatments due to the lack of understanding of the virus, and we increasingly felt disconnected from patients. With the app, we could provide FAQs and reliable information at a time when there was so much misinformation. The Patient Journey app from Enovation is one of the innovations and positive changes that emerged from the pandemic. We were finally able to collaboratively structure and programme patient information, something we had been postponing for years.’

In her role, Claire always approaches care from a nursing perspective. ‘As a Consultant Nurse, I see new patients, plan and prescribe anti-cancer treatment, and explain scan results. There is never enough time to fully explain changes related to the cancer or its treatment and what these mean for the patient, at their own pace. Questions about what matters to them outside the treatment plan can take up a lot of time, when there is also a need to focus on treatment response and cancer-related symptoms. With the app, patients can browse information, see which questions they might want to ask during appointments and access supporting details that may be helpful to them.’

Personalised patient information

At the Kent Oncology Centre, Patient Journey is used to support patients with both primary and metastatic breast cancer diagnoses. Each patient sees the information relevant to their specific circumstances. Russell set up all information for primary breast cancer, while Claire added all content related to metastatic breast cancer.

‘Primary breast cancer may be viewed as more prescriptive when compared to metastatic breast cancer’, says Claire. ‘There is usually an end of treatment time point with the aim of no evidence of disease and transitioning to living beyond breast cancer in the primary disease. Metastatic breast cancer is more like a story rather than a linear journey, as it is treatable but not curable. Therefore, the support for patient resilience focuses on how to live as well as possible with the diagnosis. The patient can only be empowered to do that with accurate and credible information.’

Consultant Nurse for metastatic breast cancer Claire Ryan.

Method

The breast oncology team at Kent Oncology Centre plans information sessions to help patients understand and get the most out of the app. Russell explains, ‘During an appointment, we go through the app with the patient, explore the different functions and point out where to find information about certain topics. This helps patients prepare better for appointments, which in turn makes consultations more time-efficient. The app also helps frame certain conversations, empowering patients with information about what they might want to discuss.’

Pacing with the patient

‘Needs differ for each patient depending on where they are in their journey’, Claire adds. ‘When the cancer progresses and patients begin to experience more symptoms as a result, the impact can be devastating. Patients must adapt to changes in their treatment plans, the potential implications for their prognosis and the effects on their day-to-day functioning. The app contains a wealth of information that enables patients to navigate what is most relevant to them at any given moment, at their own pace.’

‘Patients often don’t know what they need to know about the disease and treatment, or which questions to ask’, Claire continues. ‘The application helps them identify what is important. Optimising the browsing of information provides an opportunity for patients to identify areas of support and care they hadn’t previously considered. They often say things such as, “Oh, I didn’t know I have employees’ rights with this diagnosis.” Some sections also contain “toolkits” for patients, for example, on starting difficult conversations with children and helping them explain the diagnosis to their children in an age-appropriate way.’

Easy to set up

According to Russell, the Patient Journey app was easy to set up once the right information had been prepared. ‘It just took some time. Claire and I took a few days away from our clinic work and sat down at a kitchen table to input the content. Once everything is in, there’s not much work left to do. The app is intuitive and user-friendly. Updating existing information or adding new content is simple. The only thing you really need to keep it updated is time.’

Positive feedback

Claire hopes to explore the app’s functionalities by using the ePROMs for a specific cohort of patients as part of future clinical practice. ‘It is easier to navigate difficult conversations when patients have already read information in the app. Clinic consultation time is limited; you can’t tell patients everything during their appointment. However, you still want them to have access to all relevant information beyond the clinic room. Scheduling an additional appointment, if needed after patients have been guided to key areas of information, allows resources to be used more effectively. This also enables the healthcare team to enhance and empower the patient experience.’

‘A focus group from the University of Sussex asked patients how they experienced the app’, Russell adds. ‘The feedback was extremely positive. With that feedback, we can further adapt the app to better meet their needs. My only regret is that the app isn’t more widely used across other departments in our hospital.’

Would you like to know more about Patient Journey? Interested in finding out what Patient Journey can do for your organisation? Please feel free to contact us for more information or an introductory meeting.