How registries need good stakeholder engagement
The success or failure of a registry isn’t determined solely by the data it was built to hold. The data must be complete and high quality, of course, but successful registries also keep their stakeholders fully engaged. Experience has shown that when stakeholders see clear value in the functions the registry performs, and the outputs it generates, they are motivated to ensure accurate and complete data gets submitted at every stage.
Mandating collection isn’t enough
Simply making data collection mandatory won’t work, because it’s not the ‘silver bullet’ you might imagine. Although submission to the National Joint Registry (NJR) is now mandated for units undertaking joint replacement surgery in England, Wales and Northern Ireland, the NJR had been meeting many of its key data quality measures for some time before.
Clinician buy-in and support is key to ensuring that high quality registry data gets submitted. Gaining universal support may take some time too, so it’s important to think about the long-term goals.
Aiming for universal support
In our experience, here’s what makes a difference to overall success:
- Explaining clearly how the registry data will be used. As it’s likely to be used to monitor individual and collective outcomes, the following information must be clearly communicated: how the data will be used; how performance will be measured; and who will have access. There is also a need to alleviate any concerns over information governance by explaining who controls the data, who can see it and why.
- Providing meaningful data to stakeholders. The data mustn’t simply disappear into a ‘black hole’, limited only to the few individuals responsible for managing the registry. A step change for the NJR was the presentation of clinical feedback to a meeting of the British Association for Surgery of the Knee (BASK). For the first time, surgeons could see information about their clinical practice and compare it with colleagues at local and national levels. Not only did it show useful data, it also gave surgeons a view of what they would see in the future. Clearly, in the early stages of a registry’s development, the ability to provide much more than ‘counts’ is limited. With more longitudinal data, the more sophisticated a registry’s reporting and feedback services can become.
Making the data personal
Whilst the NJR has a responsibility to identify statistically outlying data, it also provides key stakeholders with the data they need to audit and assess their own clinical practice before potential issues become actual problems. This is personalised data that builds confidence, securing clinician buy-in for the long term.
Engagement will always be the key to a registry’s success, and providing even the most basic information to stakeholders at an early stage is key to building trust that truly adds value.
If you would like a demonstration of the types of information available to surgeons and senior trust/hospital management please contact the NEC Registries team.
