With over 367,000 new cases of cancer in the UK each year, the model for care delivery requires a person-centred approach that is scalable and offers patients access to high-quality treatments, remote monitoring and follow-up care for the long term.
The Patients Know Best (PKB) personal health record (PHR) is central to this model and gives cancer patients better tools for self-management and access to joined-up health information, regardless of where they may receive care and treatment.
The digital health record for cancer
Patients Know Best partnered with the Somerset Cancer Register (SCR) - the leading system provider for cancer used by over 100 organisations in England, to offer better, more integrated care for cancer patients. This aligns functionality across the SCR Remote Monitoring System (RMS) and PKB by enabling patients to safely manage their condition away from hospital through a densely populated PHR, supported by close integration with the RMS system.
Giving back control
At a difficult time when many patients may feel a loss of control, the PKB personal health record puts patients at the heart and centre by empowering them with a view of the information held about them in their clinical record. This is coupled with the ability to ask questions, receive extra information and support, and remain in control during periods of treatment and remission.
A single front door
As the first personal health record to be integrated with the NHS App and NHS Login, PKB offers patients access to their health information directly from the single front door of the national health interface. For cancer patients, this single view of data from across all providers means they always have access to their latest test results, reports, appointments, diagnoses, medications and more.
A clear treatment plan
There may be times when a patient is overwhelmed by what they are being told, or too poorly to take it all in during treatment or consultations. PKB care plans allow healthcare professionals to document the plan for a patient to understand and follow in their own time. Shared access and integrated data from a range of providers also allow wider support teams and carers to remain informed.
Quality care at home
Remote monitoring through secure messaging (with the ability to share attachments), video conferencing, questionnaires, symptom tracking, or by connecting monitoring devices, is highly effective for monitoring all long-term conditions including cancer. It allows patients to be safely cared for at home with support to understand when to seek help while also creating hospital capacity.
Self-management features for cancer care
Interactive care plans
Allergies, medications & measurements
Appointments & correspondence
‘Just in time’ preventative care for patients in Swansea
Urology patients at Swansea Bay University Health Board receive their Prostate-Specific Antigen (PSA) results automatically in PKB. This allows them to monitor, self-assess and manage their condition outside of the hospital and understand when to seek support.
These patients can also send asynchronous messages to clinicians, conduct virtual consultations, access a library of tailored resources, co-edit and co-create care plans. Furthermore, the longitudinal symptom tracker allows patients and their healthcare teams to view trends and patterns over time to clearly show progress or deterioration.
By moving to a new model of ‘just in time care’ as opposed to ‘just in case care’, patients and professionals have seen huge benefits:
“The introduction of PKB has changed the way we work and this has resulted in a number of savings; by reducing clinician time, GP correspondence, paperwork and telephone calls which will potentially increase capacity within the outpatient setting for patients that require a clinical review.”
“Patients often remark that awaiting the letter informing them of their PSA results is often stressful but receiving results within 7 days helps to reduce anxiety and will ultimately, empower the patients, giving them more control over decisions about their healthcare.”
Michelle Griffiths, Prostate Cancer Clinical Nurse Specialist.
Managing Chronic Myeloid Leukemia
Radboud UMC in the Netherlands is using PKB to support the long term care of patients with Chronic Myeloid Leukemia (CML). The team focuses on removing the need for face-to-face appointments, increasing medication compliance, and managing side effects more effectively by tracking symptoms.
Immunotherapy Toxicology Service prevents deterioration
Hull University Teaching Hospitals NHS Foundation Trust uses PKB in the Immunotherapy Toxicology Service to identify patients with deteriorating conditions. Patients are asked to self-monitor to report symptoms and complete fortnightly questionnaires on PKB. As a result, patients with deteriorating conditions who would otherwise have been missed are called in to receive treatment before any serious complications occur.
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