Being told you have cancer is always a shock.
And before you even have time to process the news, you enter the chaotic and confusing world of doctors’ appointments, medical jargon, treatments – and everything in between.
For many the experience is overwhelming, and processing all the new information being thrown at you can seem impossible.
In 2012, we were approached by the National Cancer Registration Service (NCRS) – the organisation that keeps track of cancer data in England – and brain tumour support charity brainstrust, whose supporters had asked them for help in accessing the records NCRS held about their tumour.
This was so they could re-visit what their doctors had told them in the various appointments, and process the information in their own time.
They expected that this would not only give them a better understanding of their diagnosis, but also let them have better and more informed conversations with their doctors and carers.
Their plea was heard – and we teamed up with both brainstrust and the NCRS to make it possible.
And thus, the Patient Portal was born.
The Patient Portal
The Patient Portal is a secure online system where patients can access the records the NCRS holds about them. It allows patients to look at reports on samples of their tumour, as well as details of their hospital visits and treatments, and any other records held by the NCRS about them.
The portal also has a ‘quality-of-life’ tool, and space for users to add their own notes, keep a list of contacts, and directory of links to helpful information about support, treatment, clinical trials and research.
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.
But this will only be successful if patients actually want it and will use it.
To find out, we originally launched the Portal in ‘pilot’ form in November 2013 for brain tumour patients. Then, in July 2014, we extended to other cancer types, with eleven clinical teams across England offering the portal to patients with melanoma, brain, bowel, prostate and kidney cancer.
So, what did we find out during the pilot?
Our findings so far
As we outline in detail in the evaluation report we published today, a quarter of patients who were asked, said they wanted access to their cancer records – a much higher proportion than expected.
And by the end of the pilot, in March 2015, more than half of the 88 patients who signed up, had accessed their records.
Although the number of patients included in the pilot was small, the users of the portal were positive about the service, with 86 per cent saying they would recommend it.
But while patients were, on the whole, in favour of the portal, their doctors 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”.
They also found it to be “one more thing” to do on top of an already busy workload, and access to up-to-date computers in clinics was often a problem.
However, all of the eleven clinical teams who helped with the pilot said they recognised the potential advantages of offering the portal to patients.
The pilot only involved a small number of patients, and we would like to offer many more access to their records.
So we are now 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.
By allowing users of Patients Know Best to add their NCRS records easily, we will increase the number of patients who can benefit from this information, and allow them to manage all of their healthcare records in one place.
And eventually, we want every cancer patient in England to be able to access their own records if they want, restoring a small amount of control into the seemingly uncontrollable experience that is cancer.
- Laura Smith is a project officer working on the patient portal