Cancer-specific electronic patient record to support clinical teams and patients where follow-up care can be managed remotely
The NHS Long Term Plan commits that patients who have completed their cancer treatment will move to a personalised stratified follow-up pathway that suits their needs and ensures they can get rapid access to clinical support as necessary. Effective assessment and care planning can lead to timely interventions and better quality of care, ensure individual’s needs are met and that resources are targeted to those who need them most.
The number of people living with and beyond cancer in England is forecast to grow from 2.3m in 2018 to 3.3m in 2028. More than half of people receiving a cancer diagnosis will now live 10 years or more. It is therefore important to redesign the cancer follow-up pathways to ensure the system can cope with the growing needs of this population alongside the demands of aging and comorbidities.
To support a patient’s ongoing cancer care by holistically connecting data and care to and from NHS organisations and to reduce the need for unwarranted outpatient attendance. Patients and healthcare teams can have access to patients’ cancer digital health records to provide better integrated care and remote monitoring of cancer conditions and treatments.
Solution and impact
Somerset Cancer Register (SCR) is a digital platform designed for healthcare professionals to manage cancer patient care as well as providing patients the ability to access their cancer record at follow-up. It provides a remote monitoring system (RMS) that is integrated to a patient portal which enables sharing of cancer data with the patient.
Follow-up test results, radiology reports and diagnosis information are made available to the patients. The patients also have the ability to record their own observations, write journal entries and access a library of resources to support self-care. The RMS assists specialists to personalise follow-up schedules, and review surveillance tests for patients who have completed treatments without the need for face-to-face outpatient appointments.
At University Hospitals of Leicester NHS Trust, prostate cancer patients have said that their outpatient follow-up appointment is often little more than confirmation of their blood test result and booking of the next test. The appointment can be inconvenient to the patient with no evidence of a positive outcome for survival. This puts an increased strain on hospital outpatient services and therefore the team designed and developed a new pathway where patients did not need to come into hospital. The previous pathway involved patients and their carers travelling to an outpatients appointment, potentially taking time off work, and waiting to see a consultant for a consultation that lasts a few minutes.
The purpose of the remote monitoring service (RMS) is to provide patients with a safe guideline-based service to monitor their prostate cancer. The service enables patients to be monitored remotely using RMS rather than attending the urology or oncology outpatients department. This greatly reduces the inconvenience for patients, reduces the cost and time of travel for them, and also generates outpatient capacity.
- SCR is a web application designed to collect patient data to help healthcare professionals manage the patient’s pathway, from GP referral through to end of treatment and long-term follow up
- SCR is also accessible on mobile devices to provide healthcare professionals with a single point of access to the patient’s cancer record
The SCR application sits on the organisation’s infrastructure and has the ability to:
- track and monitor patient progress
- manage multidisciplinary team meetings
- capture clinical nurse specialist (CNS) activity, including holistic needs assessment
- manage acute oncology admissions
- detail 13 tumour sites, including palliative care
- integrate seamlessly with clinical systems
- enable electronic transfers of tertiary data between organisations
RMS, which is linked to SCR, enables teams to:
- create a personalised follow up record for each patient
- customise follow-up activities to suit patient needs
- chart of patient results against agreed patient thresholds
- access real-time view of SCR investigation data
- configure own letters
- access easy-to-use worklists for caseload management and monitoring of tests
- benefit from supplementary alerts to assist staff or patients with specific activities
- benefit from interoperability of data, reducing the need for double data entry
- control when to publish data to the patient portal
- access a patient-centred portal linked to the national NHS App (powered by Patients Know Best (PKB))
The patient portal is used by patients to access their digital health record through PKB and the national NHS App. The patient has control of who they share their data with.
Key learning points
Working in collaboration with patients and key stakeholders (consultants, nurses, commissioners, administrators and GPs) from across the healthcare system from inception is really key.
Creation of a task and finish group, with reporting to appropriate boards and committees for progress updates, helps to engage senior leaders and enables problem solving.
Development of a robust project plan with key milestones, which includes a risk log, provides oversight to the implementation.
Having dedicated nursing and administrator resources is paramount to the success of implementation as is the daily running of remote monitoring all overseen by a lead consultant.
Having the ability to integrate results and generate clinic letters is a must for any IT system for remote monitoring to be successful.
Challenges faced are the competing priorities of other IT projects within the organisation. Building a robust communication network for troubleshooting within IT is key to the success of the project. Having patient input into the pathway is really important to make sure the patients are happy with the methods of communication and knowing how to contact a healthcare professional if required.
To date, the UHL team has 1,292 prostate cancer patients monitored on RMS.
In 2020, the UHL team reviewed 2,177 results remotely, which not only continued care during COVID-19 pandemic, but saved 2,177 outpatient appointments.
“It is great how quick patients manage to get a test result communicated to them. They use the local GP service to have the tests, results are then imported to the RMS system. Once the result has been reviewed patients can have a letter generated appropriate to their follow-up. The ability to generate graphs to observe trends and use worklists in date order ensures patients are having their blood tests in a timely manner.”
Nicola Bakewell, prostate remote monitoring administrator
“The benefits of the remote monitoring service are multiple. However, I think the direct access that the patient still has to a prostate cancer nurse specialist is crucial to the patient’s ongoing cancer journey.”
Jo Wortley, lead cancer nurse specialist, Prostate Remote Monitoring
“Remote monitoring has removed a large volume of patients from outpatient clinics, made follow-up more convenient for patients and given us certainty the follow-up is safe.”
Roger Kockelbergh, professor of urology (honorary) consultant urological surgeon
Find out more
Find out more about the NHS Cancer Programme resources to support personalised stratified follow up (PSFU) with digital remote monitoring systems (RMS) from the Cancer Alliances Workspace on the FutureNHS Collaboration Platform (access via your Cancer Alliance - contact details here).
Somerset cancer register team
Abbie Woodhouse, Macmillan cancer pathway lead, University Hospitals of Leicester NHS Trust
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