Cancer Research UK, the National Cancer Registration Service (NCRS) and
brain tumor support charity, Brainstrust, have teamed up to offer
cancer patients easy access to their treatment records after early
research reveals how patients respond to having their details available
online.The portal allows patients to look at reports on samples of their
tumor as well as details of their hospital visits and treatments and
any other records held about them by the NCRS.
As well as potentially helping patients to understand their own
diagnosis, it also allows patients to flag up if something is missing or
incorrect in their records to help improve the accuracy and quality of
the data the NCRS holds.
The portal has a 'quality of life' section where patients can fill in
questionnaires to help track different factors such as fatigue. There
is also space for patients to add their own notes, keep a list of
contacts and directory of links to helpful information about support,
treatment, clinical trials and research.
But while patients were generally in favor of the portal, clinicians were more cautious.
They were concerned that, "it may heighten a patient's anxiety about
their condition" and "patients may interpret reports they see via the
portal differently to how it has been presented to them".
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