Data Entry Options

The Registry has been set up so that all IBD teams in the UK can take part. There are three data entry options to suit different local conditions and resources. Any of the three options allows the Registry data to be submitted as they all use the same Data Submission Framework.

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 protected]

Table 1: comparison between IBD Registry PMS and IBD Registry Web Tool

BenefitPMSWebtool
Real-time data capture at the point of careYY
Ability to generate local reports for service management and improvementYY
Link to PAS data to pull through demographicsYN
Ability to generate GP letter at point of careYY
Ability to generate summary documents for patients and GPs at point of careYY
Searchable lists of patients by drug categoriesYY
Participation in Registry enabling benchmarking of services performance and activity against national levelsYY

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]

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