This project aims to drive patient engagement in cancer care via the brain tumour information portal, a secure website that provides patients access to their records held by the National Cancer Registration Service (NCRS). The concept was established following a need voiced by the brain tumour patient community and has been developed in close partnership with patients and clinicians. The NCRS collects information about all cancer patients resident in England, including histopathology reports, summaries of imaging reports, data on radio- and chemotherapy and Patient Administration System data. Patients can make their own notes, record the contact details of their clinical team(s) and undertake quality of life surveys.
The need for the portal was identified by cancer patients themselves; the brain tumour patient community wanted to be more involved in their care, have better conversations with their clinical team and carers, and avoid surprises. They believed that access to their registry records, which contain detailed information about their tumours, would help achieve these. Patients with other cancer types also supported the development of the portal.
Under the Data Protection Act 1998, patients have a legal right to access their own personal healthcare records should they wish to. The portal allows this, as the information held belongs to the patient. Another benefit of the portal is that it allows patients to check the accuracy of their own information.
The team wanted to develop secure and scalable systems and processes for online access to NCRS records. This would involve building a system allowing the secure transfer of records from the NCRS repository to the portal. This involved developing processes for retreiving records, validating patients’ identities and and enabling patients to opt into the project’s evaluation questionnaire.
They also wanted to demonstrate an interest from brain tumour patients in accessing their registry records. This required measuring the uptake rate for the site.
The team also aimed to gather feedback from patients and carers about the benefits of the portal. Their final objective was to assess the impact on clinical teams of providing record access to their patients.
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