Data Entry Options
Option 1: users of existing databases (e.g. Ferring’s ‘Rotherham’ system, Emis, GeneCIS etc) can extract and submit data from their own system (where data fields either match or can be mapped to the Registry specification) using the Registry’s Data Submission Framework.
Option 2: the IBD Registry Web Tool, which provides each hospital with its own database on a centrally-hosted server accessed through the NHS N3 network. The Web Tool enables data to be captured at the point of clinical contact with patients, provides immediate access to a summary of the patient’s disease and current care and can generate clinically useful outputs and basic service profiling information. The Web Tool has a built-in extract process to produce data files ready for upload to the Registry. Depending on the amount of data submitted to the Registry, IBD Teams will receive reports on the number of registered patients, admissions, surgery, and medications benchmarked against the national Registry data. The Registry Web Tool will be the online platform for IBD Audit from 2016 onwards. To sign up for the Registry Web Tool please contact us at email@example.com
Table 1: comparison between IBD Registry PMS and IBD Registry Web Tool
|Real-time data capture at the point of care||Y||Y|
|Ability to generate local reports for service management and improvement||Y||Y|
|Link to PAS data to pull through demographics||Y||N|
|Ability to generate GP letter at point of care||Y||Y|
|Ability to generate summary documents for patients and GPs at point of care||Y||Y|
|Searchable lists of patients by drug categories||Y||Y|
|Participation in Registry enabling benchmarking of services performance and activity against national levels||Y||Y|
Option 3: the IBD Registry Patient Management System (PMS) provided by InfoFlex. The PMS has greater functionality than the Web Tool and can be linked to hospital systems.
The PMS provides an IT platform to support IBD teams in providing high quality clinical care and will be configured to provide data though the IBD Registry to the IBD Audit from 2016 onwards.
The benefits of the PMS include:
- Easy access to an accurate summary of each patient’s care at a glance, without the need for paper notes, making all relevant clinical information accessible and reducing the potential for error
- Easy data entry – the PMS has been designed by working clinicians to be simple and easy to use in real time at the point of care
- Supports alternative models of care such as virtual clinics or telephone clinics
- Includes integrated disease scoring tools and comprehensive drug lists
- Facilitates the running of multi-disciplinary team (MDT) meetings and flare lines
- Biologics management system
- Easy organisation of clinical work lists – for example, azathioprine monitoring, biologics follow up and MDT meetings
- Can produce printable documents
- Patient summary of the consultation, diagnosis and treatment to take home
- GP letter
- Paediatric growth charts
- Subject to local IT arrangements, can be integrated with local PAS, pathology and other systems to minimise data entry
Data is easy to retrieve for:
- Service reports
- Clinical audit
- Business cases to demonstrate the impact of service, and make the case for additional resources
- Commissioner reports
Both the Web Tool and the PMS will help to improve IBD services:
- More accessible information for patient care
- Standard service and operational reports plus easily accessed data for clinical audit
- Participation in the Registry enables benchmarking against the IBD Standards and national performance
There are costs payable to Chameleon Information Management Services Ltd ( CIMS ) for licensing, installation, integration and upgrades of the PMS and these are dependent on local IT infrastructure and resources. CIMS have contracted to provide the IBD Registry PMS at a substantially reduced cost up until the end of 2018. For a local cost estimate, please contact CIMS [telephone: 01923 896939]
Find out more about:
Important information for Registry-participating clinical teams: with the COVID-19 outbreak, to ease pressure on clinical teams we postponed the last (April) submission deadline. The next submission deadline is 10 July 2020 for data to the end of June, including all...
Over 32,000 people in the UK with IBD have self-assessed their risk since launch on the 1 April 2020. Between them, they have identified the 175 hospitals (Trusts and Health Boards) that provide them with care, and the data has been shared back to their doctors which...
Given the special circumstances putting pressure on IBD teams and wider health services, we have created some in-depth articles below in an easy to read format: Switchers: Changing originator biologic to biosimilar Changing originator biologic to biosimilar With many...
With the COVID-19 outbreak and the resulting pressure on IBD clinical teams, the next IBD Registry data submission (planned beginning of April) has been relaxed, so that the next data submission dates will be 10 July followed by 9 Oct 2020. IBD clinical teams should...
Huge congratulations to IBD clinical teams across the country - we have surpassed the 60,000 patient record mark. At time of writing we hold 63,181 records. 62 IBD teams submitted for this last quarter, 24% more than the same period last year. Figure: number of...