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    NHS Digital announces patient de-identification software partnership

    Thursday, 05 July 2018 16:48
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    ePACT to be decommissioned on June 8 as ePACT2 takes over

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PatientPortalJune 17 2015

Cancer patients are being offered easy access to their treatment records under a scheme headed up by Cancer Research UK.

Online access via the Patient Portal has demonstrated how patients respond to being able to view their details online. “At the end of a pilot study in March this year, 88 patients had asked for access to their records and 50 had used the new system to view them,” says Cancer Research UK.

Cancer Research UK has joined up with the National Cancer Registration Service and the brain tumour support charity Brainstrust to develop the scheme.

It was extended last summer to other cancer types with eleven clinical teams across England offering the portal to patients with melanoma, brain, colorectal, prostate and kidney cancer. The partnership is working towards making cancer registry records available to users of
Patients Know Best (a company that manages patient-controlled medical records), by the end of 2015.
Patients who choose to access their information on the Patient Portal can view full text pathology reports, information on hospital stays and treatment received from Patient Administration Systems and some imaging reports (though not images themselves). Patients can keep track of their care using online tools, and record information about their quality of life to aid discussions with their clinical team.

Cancer Research UK says that “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.”

An evaluation report for the pilot phase makes a number of recommendations including that as the most used feature of the portal is the cancer record, work to engage users on an ongoing basis should focus on making this more dynamic.

“Ideally the portal should be useful even before NCRS records are available. Users should be able to create their own record of their care, adding and uploading their own information to supplement that available through the NCRS,” it says.

Michael Chapman, Cancer Research UK’s project director for the Cancer Patient Portal, said: “Our pilot has only involved a small number of patients, but eventually we would like every cancer patient in England and across the UK to be able to access their own cancer registry record if they choose. This will help restore a small amount of control into the seemingly uncontrollable experience that is cancer.”

Will Jones, director of development at Brainstrust, added: “We know that access to relevant, personalised information is a significant contributing factor to helping people with a brain tumour better understand their situation. This understanding is most important in helping our patients and carers feel less afraid, less isolated and more in control.”

Links:

Cancer Research UK announcement    

Patient Portal    

‘Patient Portal - Pilot Phase Evaluation’ report    

Patients Know Best    

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