Cancer controversies ‘might not arise’ if patients had electronic access to records

Many of the difficulties for women with cervical cancer which emerged recently would not have arisen if patients had direct electronic access to their medical records – including imaging derived from tests – according to two leading oncologists.

Speaking an event in Dublin to promote patient participation in clinical cancer trials, Prof Bryan Hennessy of Beaumont Hospital, Dublin, said implementation of the HSE's electronic patient record strategy would be "a very positive way forward to avoid situations like that which has led to the current upset".

Depending on how it is developed, “patients and their clinical teams would have online access in a safe and secure way to all information and all records relating to their health”, he said.

Cancer Trials Ireland (CTI), a not-for-profit organisation overseeing evaluation of potential new cancer treatments, was working to ensure all of its patients involved in clinical trials would have electronic access to their records within "one to two years", Prof Hennessy said – he declined to indicate when all patients within the HSE might have access to their records.

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The importance of direct access to records was echoed by Dr Cathy Kelly of the Mater Hospital, Dublin. She said she had worked in health systems abroad, such as in Canada, where patients could access their records and test results.

Interpreting imaging following completion of tests could be difficult and complicated, such as from an anatomical point of view, she said. There was particular difficulty with cytology – including smear tests – as there was “always ‘false positives’ and ‘false negatives’, no matter how good the system is”, Dr Kelly added.

While there was a need for balance and detailed explanation, it was important that patients were actively involved and knew their results, which could be facilitated by electronic access, she added.

Commenting on the CervicalCheck controversy, Dr Kelly said there was an incorrect perception that “doctors knew women had cancer and didn’t call them” – and “look back” began at that point. “Nobody knew those women had cancer,” she said.

Emerging from the screening controversy, she hoped the number of people getting the HPV vaccine – and support from parents – for it would increase. Likewise HPV testing; audits, comparisons to international figures, a full disclosure policy and effective look-back procedures all had an important role to play.

Department of Health assistant secretary Muiris O'Connor acknowledged the department's responsibilities in relation to making patient records available, and of the need to utilise the best technologies to ensure they were available.

Referring to the CervicalCheck issue, CTI chief executive Eibhlin Mulroe said: "A lot of things happened in recent times that might not have happened if patients had direct access to patient records, as is possible in other countries."

Issues around the CervicalCheck programme had generated “considerable upset”, said Prof Hennessy, who is “clinical lead” of CTI. “We have the utmost sympathy for all of the women and their families affected. It’s impossible not to share in their pain and anguish...it shouldn’t have happened.”

Both oncologists stressed the role of cervical screening in saving lives.

Prof Hennessy added: “It’s really important that this message is repeated and believed by women up and down the country...and that women continue to be screened regularly.”

There is one cervical cancer trial being conducted in Ireland at present. It is focused on optimising surgical options for some women with early forms of cervical cancer. CTI is also working with an international team to evaluate the drug tisotumab vedotin, what is considered by medical experts to be potentially the most promising treatment for women with advanced forms of the cancer.