Improving outcomes through patient data

There is widespread concern about use and misuse of personal data at the moment, in particular health data. Chris Carrigan, a cancer data specialist and former Director of the National Cancer Intelligence Network at Public Health England, explains some of the issues, why sharing data is so important for research and improving patient outcomes and what the ‘use MY data’ campaign sets out to achieve.

The issues with sharing health data

Whatever the rights and wrongs, the care.data programme, which closed in July 2016, did massive damage to the trust that patients have in how the NHS uses their data, or more specifically, in those who want to exploit our data for purposes other than those which patients value. As a result, more than two million patients opted out of care.data, saying they didn’t want their data to be used in this way.

This brought to the fore two fundamental issues:

1. If patients say “no”, does anyone ever have the right to overrule that wish?
2. What people were actually saying “no” to and furthermore, who asked those patients about what they DID want their data to be used for?  This, for me, is the more pressing, issue.

As cancer patients and advocates we have a good track record of contributing our informed views and having a voice.  And the NHS, mostly, listens to our voice.  But in terms of data usage, patients were not being informed, nor was their voice being heard.

Why is sharing data in the NHS so important?

Many of the new insights around the outcomes of treatments would not have been possible without the ability for data to be shared and linked.

For example, the main diagnostic test to identify bowel cancer is a colonoscopy.  We know that this test is not 100% accurate but through the use of data we have been able to highlight where improvements could be made to better detect people with the disease. By doing so, we have seen the proportion of people developing bowel cancer within three years of having a colonoscopy fall from 10.6% to 7.3% in six years.

We also know that a quarter of bowel cancers are diagnosed as a result of an emergency presentation.  Bowel cancers which are detected through screening have a 97% survival rate after a year; for those diagnosed through an emergency route this falls to 49%.

Knowing this has helped the NHS to do something about it.  Since the figures were first published, the rate of cancers detected through an emergency route has fallen from 27% to 24%.  That’s the equivalent of over 1,000 patients each year going through a more “managed” diagnostic process, just for bowel cancer.  And we know that fewer patients being diagnosed as an emergency means more patients alive now who perhaps may not have been.

Without shared and linked data, this would still be hidden.

What would happen if no data was shared?

Not having access to the data can have huge implications, in terms of the actual analysis which is possible.  In essence, whilst some analyses would still be possible, it would become harder, and potentially impossible, to look at less common cancers, age groups where cancer is less common, or for different ethnic groups. This happened quite recently in parts of Europe, where sensitivities around data usage led to access to data becoming restricted, which caused huge damage.

To highlight the implications of a loss of access to data we developed scenarios looking at how the most powerful recent piece of national analysis, Routes to Diagnosis, would be affected by data access problems.  The results (see them at www.useMYdata.org.uk/scenarios.shtml) speak for themselves, and highlight the inability to undertake reliable analysis on less common cancers, certain age groups, and small area survival.

The ‘use MY data’ campaign

The ’use MY data’ movement was established to give patients that detailed understanding about their data and to allow them to have that truly informed voice.  We do this by holding workshops to explain to patients how their data flows around the NHS, the benefits of using data to an individual, for society, and for those who will become cancer patients in their lifetime.

Fundamentally, the use MY data movement is about equipping cancer patients with the knowledge to make not just a choice, but an informed choice about data usage, and to equip large numbers of patients with the information that they need in order to advise other patients and groups

Getting involved

By joining the use MY data movement you will also become part of a growing movement of patients and advocates, determined to develop a fuller understanding and have a greater influence in the use of data to save lives. Just email getinvolved@useMYdata.org.uk.

As one of the use MY data members said, “The type of treatment that I had depended so much on the data of patients who went before me”.

By Chris Carrigan, cancer data specialist and former Director of the National Cancer Intelligence Network at Public Health England