Darzi Fellowship brings new insights into the development of the Registry

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The Cystic Fibrosis Trust’s Registry team is currently working on a project to streamline how cystic fibrosis clinics transfer data into the UK Cystic Fibrosis Registry, and how baseline data is shared back to people with cystic fibrosis and their clinical teams. Over a period of a year, Jorge Meira, one of this year’s Darzi Clinical Fellows is working with the team, adding his clinical experience and insight to enhance the project.

What is the Darzi Fellowship scheme?

Every year for the past ten years, hospitals and other organisations around London have been sponsoring up-and-coming young professionals working in the NHS to realise their potential. They are supported to complete a one year fellowship programme.

The fellowships - known as the Darzi Fellowships, after eminent clinician and NHS manager, Lord Darzi - provide a selected group of nurses, doctors and allied health professionals with the skills and knowledge to make changes and improvements in the NHS. The fellowship includes studying for a Post graduate Certificate in Leadership in Health as well as conducting a project that will lead to improvements within the NHS.

Cystic fibrosis nurse specialist Jorge Meira is one of this year’s Darzi Fellows, he joins a select group of 27 other professionals who have been chosen for this year’s fellowship scheme. Jorge’s fellowship is supervised by Su Madge and Dr Siobhán Carr at the Royal Brompton Hospital and Rebecca Cosgriff, Director of Data & Quality Improvement at the Trust.

“The UK CF Registry only exists because of the support from people with CF, families, and the NHS CF teams who enter and use the data” explained Rebecca Cosgriff. “It’s great to build upon this support with a collaboration like this project with Jorge, as it means that the Registry benefits from his unique front-line experience, and Jorge is able to gain a special insight into the workings of the UK CF Registry”.

Sharing clinical data with the UK CF Registry

Most people with CF have their health and care reviewed once a year, a process known as an annual review. It’s a comprehensive look at all aspects of someone’s health and well being, from their lung function, to how much exercise they’re doing to any concerns or anxieties they want to discuss.

For people with CF, these can be beneficial to get an overview of their health, and an awareness of things to look out for in the future. For the CF clinical team, it allows them to better support people with cystic fibrosis. Together the clinical team and the person with CF can agree a tailored care plan for the next 12 months.

If people with CF have given their consent, data from their review is fed into the UK Cystic Fibrosis Registry. Collective data from the Registry is published every year, providing an overview on cystic fibrosis helping people with CF understand their condition and giving clinical teams evidence to improve the quality of care. Data from the Registry is also used for a range of purposes including helping commissioners provide funding to NHS centres, and monitoring the safety and effectiveness of new treatments. Anonymised data from the Registry are used by researchers, after completing a rigorous assessment of the research they'd like to conduct, to identify trends and patterns that tell us new things about CF and potentially better ways to support people in the future.

Smoother transfer of data

Currently the process of sharing data with the Registry team can be time consuming, involving manually adding data into the Registry portal. This is one of the reasons the Registry team are currently working on a way to streamline how the data is shared from electronic health records. (While not all CF patient records in the UK are stored in this way, a substantial minority are, so this seemed to be a good place to start to make improvements). The team’s ambition is to have a simple process involving a few steps to move the data across to the Registry.

Jorge Meira and the Registry team are currently looking at how to improve and simplify the transfer: they need to make sure that they can export the data from the health record, format it and import it correctly into the Registry.

The formatting is the most time-consuming part of this explained Mary Yip, UK CF Registry Development Manager “We need to make sure that the field names from the health record will be lined up with the correct data field in the Registry, in a process known as ‘mapping’. When you shop online, sometimes your computer will try and fill in the fields for you, but it doesn’t always get it right – what it is doing is mapping or matching the fields it has stored, against the questions in that particular form. We want the fields in the electronic health record to match up with the fields in the Registry correctly each time”.

“Having this semi-automated data transfer will save clinics time and improve the quality of the data that gets added to the Registry by reducing the errors that creep in when adding it manually. In addition, it will make it easier to add data to the Registry from each time someone comes to the clinic, rather than once a year” commented Jorge Meira.

Latest news on My CF Registry

Another part of this partnership with the NHS is to add further enhancements to the way that the clinic data from the Registry is shared back to people with CF and their clinical teams within the My CF Registry clinical dashboard. One possibility under discussion is that the dashboard could compare the data from someone with CF with a set of baseline data from the Registry.

“We don’t know what clinical measures people with CF and their clinical teams would find it useful to see on the dashboard” explained Jorge Meira. “For example, does a person with CF want to see the same type of information as their clinical team. Or do they want to see more than a year’s worth of data. We’re currently running focus groups to find out”.

Across many areas of research there’s a greater emphasis on learning as much as we can from the health data that we have available. The UK Cystic Fibrosis Registry is already held in high regard, and guides and informs the best possible care for people with cystic fibrosis. This is an exciting project for the Registry to deliver more for people with cystic fibrosis, at a time when big changes are under way in how the condition is treated and managed.

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