Patient opinion: Challenges of information sharing in Pathology

Sophia Turner, patient representative on NHS Digital’s newly formed pathology board, blogs for the PRSB about the current challenges in sharing information and what’s needed for the future.

“When I was diagnosed with breast cancer in 2014, I wanted to understand everything about my condition and the treatment I could have. I had a background in pathology and data, but my illness spurred on my interest in patient outcomes.

As a cancer patient you end up Googling a lot, and the wealth of research you find can be overwhelming. From smalls surveys to large, understanding why certain data is used and considered as evidence for treatments is confusing. I did a degree in epidemiology, because I wanted to understand the data that was needed to come to a robust, statistical answer.

In 2017, I became a patient representative for the National Audit in Breast Cancer (NABCOP) and I’ve had access to my own personal records at the National Registry for Cancer. What I’ve noticed about breast cancer care is that there are huge variations, not just based on age, but across different parts of the country. For example, some hospitals might favour endocrine therapy to surgery, others might offer more or less chemotherapy to patients. I’ve noticed that data sets aren’t complete in all parts of the system, even when they’re really important. In some cases it might mean that information that can determine treatment isn’t being recorded in exactly the same way. The WHO performance status, which documents the general well-being of a patient, is a key data point when deciding an appropriate course of treatment, and the people discussing that may never have met you. It’s vital that data like this is recorded and shared in a consistent manner. In my experience, pathology data items are often not complete and even when they are, the local scoring may differ from lab to lab and there’s also variation in scoring between pathologists.  For example, a patient may have their details of oestrogen receptors recorded, but not their HER2 protein status, and what is classified as ‘oestrogen positive’ in one lab may be ‘oestrogen negative’ in another. We also need to consider standardising how tissues are prepared and scored across the UK, as well as how final results are recorded. There are variations because standards are defined regionally, and because pathology is an art, that is to say, context matters. The use of standards, digital pathology and complete data sets will help identify the best treatment for a patient and also provide the best, consistent data for research.

At the moment, the number of referrals where testing is needed is increasing. But while 10 years ago pathologists may have needed to record 12 lines of data, now there might be three pages. As the workload increases, we need digitisation to help the process run more smoothly. In the future I would like to see pathology results fully incorporated into our digital health records. I’d like to see them handed over to patients and flowing into our cancer registry to facilitate future research. However, this can only become a reality if this information is standardised, so that it can be shared between different health and care professionals as well as patients.”

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