Making sure data is put to good use

Rachael Brannan – Service Delivery Manager, ODR

You might say I am a bit like a human sieve because my role is to make sure the right information is available to the right people, at the right time and importantly, under the right conditions. Sometimes this means saying, ‘no you can’t do that’ or ‘have you thought about doing this instead’.  This sieve-like role can be described by the more technical term, ‘information governance’. For me, information governance is not about locking information away from view and rendering it impossible to use; but providing a clear framework and processes to manage access to the information.

The Office for Data Release exists to do just that – provide a structured approach to make sure we unlock the tremendous value of cancer information, while making sure any information the cancer registry shares will be handled lawfully and with the utmost respect.

Over the course of a year, my team and I work with hundreds of cancer researchers, doctors, nurses, public health professionals in local councils and others to make sure that cancer information is available to support doctors to make decisions about their patients’ care, monitor and improve how your local hospital operates their cancer services and to answer big research questions that completely change the way we understand cancer. No project looks the same as the next!  In 2016 we had over 300 requests, so as you can imagine there’s never a dull moment!

As well as liaising with prospective users of cancer information, my team of Data Access and Confidentiality Managers also have a critical role in making sure that the confidentiality of individuals is at the forefront of our data sharing activities.  I take this duty to protect confidentially really personally, not just because my own gran’s information is included but I know that other peoples’ grandparents, parents, siblings, children and friends are in the cancer registry too.

While my gran is now in her eighties and fighting fit, I’ve had two more grandparents who weren’t so lucky.  Information about them, their cancer diagnosis and treatment is included in the registry. This information has the potential to change outcomes for others. To me, that’s pretty big stuff in the fight against cancer and even after 5 years of working with the cancer registry,  I get a huge sense of pride when I hear about research that’s making great strides forward thanks to the information we hold and make available.