Skip to main content

NHS Blood and Transplant

Experian Data Quality helps NHSBT to ensure that healthy data processes are the lifeblood of UK transplant services

NHSBT drew on Experian’s industry leading expertise in, and experience of, large and complex databases to ensure that potential donors’ wishes were accurately recorded, enhancing confidence in the quality of their organ donor data.

Experian had the know-how, insight into handling large and sensitive databases and a collaborative approach to working relationships that matched both the recommendations of the Duff Report and the requirements of NHSBT.

David Shute Assistant Director for Transplant Support Services, NHS Blood and Transplant

Background

There can be few organisations with a remit as important as NHS Blood and Transplant (NHSBT), managing the voluntary donation system for blood, tissues, organs and stem cells. It is their responsibility to promote, collect and use these life-saving and life-enhancing resources for the benefit of patients across the country.

It’s a major challenge, both clinically and logistically, with the organisation supplying around 2 million units of blood a year to hospitals in England and north Wales, and supporting more than 3,700 organ transplants involving over 2,000 donors in 2010/11 .
NHSBT drew on Experian’s industry leading expertise in, and experience of, large and complex databases to ensure that potential donors’ wishes were accurately recorded, enhancing confidence in the quality of their organ donor data.

Situation

The Organ Donation and Transplantation Directorate (ODT) is a major part of NHSBT with responsibilities that include: serving patients and their families by ensuring that the possibility of being an organ donor is considered as part of all end-of-life care and ensuring that their wishes to be an organ donor are honoured; facilitating the timely retrieval of donated organs and ensuring that they get to patients in need of a life-saving or life-enhancing transplant; managing the UK Transplant Registry, encompassing details of all donors and patients who are waiting for, or who have received, a transplant; and maintaining the national NHS Organ Donor Register (ODR).
The ODR is a voluntary system and if people are to participate, they must be confident that the information held on their donation preferences is accurate and will be respected. An erosion of this confidence could have a negative effect on potential donors’ willingness to take part, with far reaching consequences for patients awaiting transplants.

In 2009 ODT wrote to people who were new to the register to confirm their donation preferences. Some potential donors replied, however, saying that the choices held by ODT were not the ones they had stipulated. Understanding the importance of these responses, NHSBT set about finding what had gone wrong, identifying a software programming error that had transposed some donor preferences. ODT immediately focused resources to resolve the problem.

In 2010, an independent enquiry chaired by Sir Gordon Duff found that NHSBT had reacted swiftly and effectively once the error had been identified, but recommended that they work with an organisation with experience of managing large databases to ensure that all data handling was of a high standard.

Solution

After exploring a range of options, NHSBT selected Experian as the organisation with the expertise demanded by Sir Gordon Duff. David Shute, Assistant Director for Transplant Support Services at NHSBT said, “Experian had the know-how, insight into handling large and sensitive databases and a collaborative approach to working relationships that matched both the recommendations of the Duff Report and the requirements of NHSBT.”

The first step involved understanding precisely what NHSBT wanted from Experian and what the data audit needed to deliver. The Experian team met with NHSBT to ensure that engagement was targeted and delivered the required outcomes. This initial scoping exercise paid dividends, with two critical prerequisites emerging: firstly, given the sensitivity of ODT’s data, the review had to be held onsite under strict security conditions; and secondly, any work undertaken by Experian had to have minimal impact on ODT’s day-to-day operations.

David Shute said, “From the very beginning, Experian worked with us to agree what their remit was and the parameters within which they had to operate. In taking the time to understand our unique circumstances, they conducted a thorough, efficient and, importantly, painless auditing process.”

Experian then worked with ODT staff to carry out a detailed information audit to review processes —how data flowed into and around the organisation. This involved the review of a third of more than 17 million donor records and encompassed data accuracy and integrity using Experian Data Quality address cleaning and contact data deduplication solutions. Personal information was compared with third party sources, such as the Royal Mail’s address databases, establishing the reliability of the data held on the ODR.

As well as deploying its technology solutions, Experian engaged on the personal level. A challenge for ODT had been the diversity of data streams that feed into the ODR, including flows from call centres, government agencies such as the DVLA, paper applications and bulk transfers. To ensure that this experience was captured accurately, the Experian audit team talked to staff with responsibilities across these data streams — helping to gain a rich picture of the reality of data handing ‘on the ground’.

Over eight days, the Experian audit team explored ODT’s data governance, including the state of their contact data management (CDM) systems and processes. Ten areas of scrutiny included security, reporting and data quality and delivered insight into individual areas as well as the directorate as a whole. The results of the health check were fed into Experian’s data Maturity Model, which rates organisations’ data handling systems and processes to give greater understanding of where they are and how they can progress.

Experian’s verification of accuracy allows ODT to be confident in the accuracy and integrity of its data and data management processes. It also acts as a benchmark — with the ability to compare current performance against potential enhancements using novel technologies, additional data sources and new processes.

Results

Reflecting the need for rapid action Experian delivered its report in January 2012, within three months of the initial brief.

NHSBT received an extensive report from Experian, which concluded that ODT’s data handling at the time of the audit was sound and fit for the purposes it was intended for. “Our Maturity Model rating brought us an enormous amount of confidence and, more importantly, enables us to reassure those who register on the Organ Donor Register that their data will be held securely and accurately,” said David Shute, Assistant Director for Transplant Support Services at NHSBT. “The report as a whole provided a greater understanding of data quality issues, and independent verification that the hard work we’d undertaken to ensure data quality had paid dividends.”

As well as benchmarking quality to date, the report suggested best practices and simple steps for ODT to take to further enhance their data effectiveness. The Experian audit and report met the organisation’s objectives in full, delivering: a comprehensive audit that worked around operational needs; confirmation from experts that standards were on a par with what was required; practical advice to strengthen these standards still further; and reassurance for internal and external stakeholders that their confidence in data safeguards for the ODR was well-founded.

“NHSBT is now able to move forward, sure in the knowledge that we are operating to industry standards and keeping pace with a rapidly changing information environment,” added David Shute, Assistant Director for Transplant Support Services at NHSBT. “Whilst our partnership with Experian was born out of necessity, the audit and report has left us a stronger and more confident organisation as we deliver our critical services to patients.”

*http://www.organdonation.nhs.uk/ukt/statistics/statistics.asp?loc=home&source=content_link

Read more about the software NHS Blood and Transplant use: