IBD June Update

IBD REGISTRY SYMPOSIUM AT BSG IN MANCHESTER

Join us in Manchester on Wednesday 21st June at 4.30-6pm for the first presentation of the biologics KPIs, as well as the latest news on research projects using the Registry. Chaired by Stuart Bloom and Barney Hawthorne, speakers include David Barker, Fraser Cummings, Mark Allan, Keith Bodger and Angel Castro Silva.

 

NEW DATA VISUALISATION TOOLS FOR QUALITY IMPROVEMENT

A data visualisation tool has been developed to help IBD teams review their performance against key performance indicators for biological therapies. The tool is available initially for users of the IBD Registry Web Tool. The charts show local data compared with benchmarked standards as well as the national average (based on Web tool users). The tool is intended to enable teams to review how well they are doing compared to the national standards, prompt them to identify where changes in care are required and support them to implement improvements. There is an opportunity to provide feedback on this tool, which we would welcome. It should take 5 minutes to complete and can be completed via this link. You can find out more at the IBD Registry Roadshow meetings and at the IBD Registry symposium at the BSG on 21st June.

 

HELP SHAPE THE IBD REGISTRY REPORTS – LIVERPOOL UNIVERSITY SURVEY

Funded by Crohn’s & Colitis UK, Keith Bodger and his team in Liverpool are working with the UK IBD Registry to develop data reports for IBD teams. The aim is to produce site level information to support local service planning, delivery and quality assurance. They’d like to get your views on some pilot data reports, and hope to present feedback during the IBD Registry Symposium at the BSG on Wednesday 21st June. Please follow the link below for more information and to provide your feedback on the draft reports:

https://www.surveymonkey.co.uk/r/UKIBDR-Reporting

 

IBD REGISTRY 2017 ROADSHOW

The 2017 Roadshow has visited Exeter, Cardiff, Warrington, Darlington and London, reaching over 95 IBD doctors, nurses, audit leads and other team members. With a focus on practical information and action planning, the meetings are a chance to think and plan away from the hospital, as well as a chance to share experiences and tips. Delegate feedback suggests some key themes:

  • Seeing how the Registry can help teams to generate data that’s useful locally, to drive service development or improve quality.
  • Getting a good understanding of different types of data entry systems
  • Finding out how to get started, and where to find help when you need it.

 

QUARTERLY DATA SUBMISSION

The next data submission deadline is 30th June, so please make sure that you submit all of your data for the period up to 31st May. If you need any help at all in preparing for this, or if you have not yet registered with NHS Digital, please email support@ibdregistry.org.uk

 

DATA ENTRY GRANTS – DEADLINE EXTENDED TO 17TH JUNE 2017

The deadline for data entry grant applications has been extended to 17th June, but priority will be given to those who have applied by the initial deadline of 17th May. Please contact support@ibdregistry.org.uk for an application form. Applications need to be returned by 17th June 2017.

 

CALDICOTT GUARDIAN OPPORTUNITY

The Registry has a vacancy for a Caldicott Guardian to support all Information Governance aspects of the project. Please contact support@ibdregistry.org.ukfor more information.

With our thanks for your continued contribution to the IBD Registry,

Dr Stuart Bloom,
IBD Registry Chair

Dr Fraser Cummings,
IBD Registry Clinical Lead

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BSG May 2017 Update

NEW DATA VISUALISATION TOOLS FOR QUALITY IMPROVEMENT

A data visualisation tool has been developed to help IBD teams track performance against key performance indicators for biologics. The tool has been developed for the Registry by CIMS as an add-on to their InfoFlex IBD software and will be available initially for users of the IBD Registry Web Tool. (This development was funded by the final stage of the 2016/17 HQIP grant to the RCP for the IBD Audit.) The charts show local data compared with the national standard and the average performance of all hospitals using the web tool. We hope the data visualisation tools will help teams identify how well they provide care against the key performance indicators and prompt them to make changes where necessary to improve the quality of patient care. The data visualisation tool will be launched in May and you can find out more at the IBD Registry Roadshow meetings and at the IBD Registry symposium at the BSG on 21st June.

The charts below are samples showing number of patients receiving biological therapies and incidence of post-induction reviews (all data is fictional).

The charts below are samples showing number of patients receiving biological therapies and incidence of post-induction reviews (all data is fictional).

Biological Therapy Post Induction Review

REGISTRY PARTICIPATION

Participation continues to grow, with 91 sites now set up to enter data into the IBD Registry. If you have not yet registered to participate in the IBD Registry, would like help uploading your data, or have any other registry related queries please contact Data Manager Mark Allan by emailing support@ibdregistry.org.uk

QUARTERLY DATA SUBMISSION

The next data submission deadline is 30th June, so please make sure that you submit all of your data for the period up to 31st May. This gives sites one month to submit the data and make sure it is accurate and up to date. If you need any help at all in preparing for this, or if you have not yet registered with NHS Digital, please email support@ibdregistry.org.uk

DATA ENTRY GRANTS – APPLY BY 17TH MAY 2017

The Registry is pleased to announce that grants to help teams with data entry have been made to the following Trusts: Birmingham Children’s, Brighton & Sussex, Coventry, Derby, East and North Herts, Northampton, Nottingham and West Herts. A second round of funding is now available: contact support@ibdregistry.org.uk for an application form. Applications need to be returned by 17th May 2017.

CONVERTING YOUR EXPORTED RCP BIOLOGICS AUDIT DATA INTO USABLE RECORDS

We have developed a data conversion tool that makes it easy to read data exported from the RCP Biological Therapies Audit. The tool converts the Excel files into a user-friendly, easy to read document for each patient record. These can be used to make manual data entry easier or can be filed in the patient’s clinical record. Sites will need to have exported the Registry-compliant export files from the IBD Audit tool in order to use this system. If you’d like to see an example of what the tool can produce, please email Mark at support@ibdregistry.org.uk

IBD REGISTRY SYMPOSIUM AT BSG ANNUAL MEETING IN MANCHESTER

Join us in Manchester on Wednesday 21st June at 4.30-6pm for the first presentation of the biologics KPIs, as well as the latest news on research projects using the Registry. Chaired by Stuart Bloom and Barney Hawthorne, speakers include David Barker, Fraser Cummings, Mark Allan, Keith Bodger and Angel Castro Silva.

USING DATA TO IMPROVE HEALTHCARE – FREE, ONLINE COURSE

This online course starts on 8th May. The course focuses on clinical practice and processes, so will be most relevant to physicians, at all levels of training. However, anyone is welcome to participate, and there’s no charge to access the course. View the course here.

OTHER QUALITY IMPROVEMENT NEWS

Developing Quality Improvement Champions in IBD – quality improvement training by the Royal College of Physicians, London starts on the 6th June. 9 teams will be attending this course that runs over 6 months and will help teams to plan how to implement an improvement plan into their service. To register your interest for future courses please contact qihub@rcplondon.ac.uk

INDUSTRY SUPPORT

The Registry’s Industry Working Group is developing a network of field based pharma company staff trained to answer queries about the Registry and signpost support for clinical teams. The aim is to launch the programme in the next month or two. If you have any queries about this initiative please contact claire@dovetailstrategies.com

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IBD REGISTRY 2017 ROADSHOW DATES ANNOUNCED

A series of half-day meetings to support clinical teams as they join the IBD Registry. The sessions provide protected time for teams to learn about the Biologics Audit and QI programme using the IBD Registry, and to develop local plans for Registry adoption. Each meeting will be tailored to local needs and aim to provide information, support and hands-on guidance. Experts from the Registry will be on hand to answer questions, and interactive workshops will provide practical support for teams to work together to develop your own plans. Free to attend due to generous industry sponsorship. Register at http://ibdrroadshow2017.eventreference.com/

  • MON 15th MAY EXETER
  • THURS 18th MAY CARDIFF
  • FRI 19th MAY SHEFFIELD
  • MON 22nd MAY WARRINGTON
  • TUES 23rd MAY DARLINGTON
  • FRI 2nd JUNE LONDON
  • FRI 9th JUNE BIRMINGHAM
  • AUTUMN 2017 GLASGOW

REGISTRY PARTICIPATION

Participation continues to grow, with 91 sites now set up to enter data into the IBD Registry, and over 24,600 patient records submitted. If you have not yet registered to participate in the IBD Registry, would like help uploading your data, or have any other registry related queries please contact support@ibdregistry.org.uk

QUARTERLY DATA SUBMISSION

The next quarterly data submission will be at the end of March. If you need any help at all in preparing for this, please contact Data Manager Mark Allan by emailing support@ibdregistry.org.uk

TRUSTS IN ENGLAND – 40% DISCOUNT ON AUDIT SUBSCRIPTIONS BY 15TH MARCH

We’ve had an encouraging response to the request for subscriptions from Trusts in England to help the BSG maintain the Biologics Audit now that NHS England funding has been withdrawn.

At £2,500 per annum, the subscription is significantly less than the cost of one patient on biologics treatment for a year. Subscribers will receive benchmarked quarterly reports on the Biologics Audit KPIs focusing on quality improvement topics recommended in the last RCP Biologics Report. Later in the year, it is our intention to include reporting of HES data in relation to the Biologics data.

The BSG has offered to reduce the cost in the first year by 40% if a Trust provides a purchase order by 15th March 2017. We have written to the Chief Executives of all Trusts in England explaining the new arrangements for the Biologics Audit, putting the subscription cost in the context of overall expenditure on biologics for IBD, and reminding them that participation in the Audit is part of the NHS England Quality Accounts requirement.

Some teams have contacted us about submitting data to the IBD Registry if their Trust decides not to subscribe to the Audit. At present, you will still be able to submit data, but the Registry will not be able to provide the Trust with the benchmarked Biologics Audit reports. A copy of the letter to CEOs is available on request to support@ibdregistry.org.uk

DID YOU KNOW?

·      Teams can participate in the IBD Registry using their own choice of data entry systems to suit local needs (including some existing local systems)

·      Being part of the IBD Registry will give teams:

o   Robust local data to manage their biologics patients and IBD service more effectively, efficiently and safely

o   Evidence to benchmark the quality of their service as part of a national audit of the safety and appropriate use of biologics

 

With our thanks to you for your continued contribution to the IBD Registry,

Dr Stuart Bloom, IBD Registry Chair


Dr Fraser Cummings, IBD Registry Clinical Lead

 

DATES FOR YOUR DIARY:

·       MON 15th MAY EXETER ROADSHOW

·       THURS 18th MAY CARDIFF ROADSHOW

·       FRI 19th MAY SHEFFIELD ROADSHOW

·       TUES 23rd or WED 24th MAY DARLINGTON ROADSHOW

·       FRI 2nd JUNE LONDON ROADSHOW

·       FRI 9th JUNE BIRMINGHAM ROADSHOW

·       WED 21 JUNE:   IBD REGISTRY SYMPOSIUM AT BSG ANNUAL MEETING, MANCHESTER

·       AUTUMN: GLASGOW ROADSHOW

·       DECEMBER : Publication of the IBD Registry initial report

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January Headlines

·      The RCP audit now has closed so you need to export your data if you haven’t already done so.

·      A data visualisation module for the Registry Web Tool will be piloted soon.

·      NHS England has included the IBD Registry Biologics Audit on the Quality Accounts list for the coming year.

·      Trusts in England are being asked for a £2,500 subscription fee to help the BSG cover the costs of the Biologics Audit. Trusts responding by 15th March will benefit from 40% discount.

·      To help you get the most out of Registry participation, the IBD Registry 2017 Roadshow will visit Birmingham, Cardiff, Darlington, Exeter, London, Sheffield and Warrington in May/ June, and Glasgow in the autumn. Register your interest at http://ibdrroadshow2017.eventreference.com/

·      A PhD opportunity at University of Liverpool on record-keeping in patients with IBD using electronic patient record systems is open for applications until 13th February https://www.findaphd.com/search/projectDetails.aspx?PJID=82615

EXPORT YOUR IBD AUDIT DATA NOW!

The RCP biological therapies audit web tool has now closed. In line with programme closure and information governance procedures, the data will be permanently deleted in February and there will be no opportunity to retrieve it after this point. If you haven’t already done so, and you want access to your audit data you need to export it as soon as possible. You can store the information locally if you don’t yet have an IBD Registry data entry system up and running. If you need any help please contact biologics.audit@rcplondon.ac.uk

 

REGISTRY PARTICIPATION

Participation continues to grow, with 85 sites now set up to enter data into the IBD Registry, and over 22,893 patient records submitted. If you have not yet registered to participate in the IBD Registry, would like help uploading your data, or have any other registry related queries please contact support@ibdregistry.org.uk

 

REGISTRY ROADSHOW TO SUPPORT IBD TEAMS

A series of half-day workshops will be held around the country to support clinical teams as they join the IBD Registry. The workshops will provide protected time for teams to learn about the Biologics Audit and QI programme using the IBD Registry, and to develop local plans for IBD Registry adoption. Each meeting will be tailored to local needs and aim to provide information, support and hands-on guidance. Experts from the IBD Registry will be on hand to answer questions and interactive workshops will provide practical support for teams to work together to develop your own plans. Dates will be confirmed soon, and you can register your interest here http://ibdrroadshow2017.eventreference.com/

 

DATA VISUALISATION COMING SOON ON THE WEB TOOL

A data visualisation module is being prepared for piloting on the Registry Web Tool. It will provide charts illustrating the profile of the patients you have entered into the tool and how you are progressing with the Biologics Audit KPIs, compared to other Web Tool users. The pilot system will be available on the Registry Web Tool from late February/ early March and we will be inviting your feedback soon afterwards to assist further development. This work is the final element in the RCP IBD Programme and has been developed with the Registry Team.

 

QUALITY ACCOUNTS 2017/18 – ENGLAND

The IBD Biologics Audit, which is now managed by the IBD Registry has been included on the NHS England list of Quality Accounts for the coming year. The intended benefit for IBD teams is to bring the Biologics Audit to the notice of the Trust Board and Chief Executive, which should help with gaining support for approval and implementation of a data collection system and resource for data entry. It is not the Registry’s intention that Quality Accounts status be used within a Trust to pressurise members of the IBD team about audit data entry and we would ask you to inform us if this occurs. For more information on the IBD Registry Biologics Audit and Quality Accounts see http://ibdregistry.org.uk/qualityaccounts/

 

SUBSCRIPTION REQUESTS TO TRUSTS IN ENGLAND

As you know the IBD Biologics Audit is no longer funded centrally by NHS England. Therefore the BSG is obliged to seek a local subscription from Trusts as a contribution towards the costs of maintaining the Biologics Audit now it is part of the IBD Registry. This subscription has been set at £2,500 which is significantly less than the cost of one patient on biologics treatment for one year. In return the IBD Registry will provide benchmarked quarterly reports on the Biologics Audit KPIs focusing on the areas for quality improvement recommended in the last RCP Biologics Report. At some point later in the year, it is our intention to include reporting of HES data in relation to the Biologics data.

The BSG recognises that introducing the subscription for the Audit will not be welcomed in some Trusts and has therefore offered to reduce the cost in the first year by 40% if a Trust provides a Purchase Order by 15th March 2017. The BSG and Registry have written to all Chief Executives in Trusts in England explaining the new arrangements for the Biologics Audit, putting the subscription cost in the context of overall expenditure on biologics for IBD, and reminding them that participation in the Audit is part of the NHS England Quality Accounts requirement.

Some Trusts have been concerned that they may not be able to submit data to the IBD Registry if their Trust decides not to subscribe to the Audit. At present, this is not the case: you will still be able to submit data, but the Registry will not be able to provide the Trust with the benchmarked Biologics Audit reports. A copy of the letter to CEOs is available on request to support@ibdregistry.org.uk

RESEARCH OPPORTUNITY FOR TRAINEE IN GASTROENTEROLOGY (PhD)

The following PhD studentship based in Liverpool, funded via the MRC Network of Hubs for Trials Methodology Research (HTMR), is now open for applications: Record-keeping in patients with inflammatory bowel disease (IBD) within electronic patient record systems: Current practice and motivations for collecting structured data

Supervisors:  Dr Keith Bodger, Prof. Paula Williamson, Prof. Bridget Young

Closing date, 13th February 2017 @4pm

Details at:  https://www.findaphd.com/search/projectDetails.aspx?PJID=82615

Do please forward to any local trainees who might be interested.

FUNDING AVAILABLE FOR LOCAL DATA ENTRY SUPPORT

The Registry has secured industry funding to help sites with data entry. Many thanks to our colleagues at AbbVie, Allergan, Dr Falk, Janssen, Napp, Pfizer, Takeda, Tillotts and Vifor for their contributions to this fund. IBD teams were invited to apply for grants in January and we will be in touch with applicants in the next few weeks. For more information please contact support@ibdregistry.org.uk

DID YOU KNOW?

·      Teams can participate in the IBD Registry using their own choice of data entry systems to suit local needs (including some existing local systems)

·      Being part of the IBD Registry will give teams:

·      Robust local data to manage their biologics patients and IBD service more effectively, efficiently and safely

·      Evidence to benchmark the quality of their service as part of a nation al audit of the safety and appropriate use of biologics

BE PART OF THE REGISTRY PUBLICATION COLLECTIVE

Looking ahead to 2017, we’re aiming to present the first IBD Registry data on Wednesday 21 June 16:30 – 18:00 at the BSG annual meeting, with a publication reporting on the majority of biologics patients in England at the end of the year. All sites contributing patient records will be acknowledged in presentations of Registry data. Details will be available in the next few months.

 

WHAT NEXT?

If you’ve registered to join the IBD Registry you will have information about what you need to do to participate. If you haven’t already done so, please register to be part of the programme using this form. For any other queries please contact support@ibdregistry.org.uk

 

With our thanks to you for your continued contribution to the IBD Registry,

Dr Stuart Bloom, IBD Registry Chair


Dr Fraser Cummings, IBD Registry Clinical Lead

KEY DATES:

3 February 2017: 10 years of the UK IBD audit: framing the future, RCP in London

May/ June 2017: IBD Registry Roadshow (dates and venues will be circulated soon)

21 June 2017: IBD Registry Symposium at BSG Annual Meeting 2017, Manchester

December 2017: Publication of the IBD Registry initial report

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UK IBD REGISTRY ENDS YEAR ON A HIGH NOTE

We reached the end of 2016 with 60 sites actively participating in the IBD Registry, and over 21,000 patient records submitted. 80 sites in total have a ‘live’ system for data capture, and 21 additional sites are in the process of setting up so we expect patient numbers to increase steadily. If you have not yet registered to participate in the IBD Registry, would like help uploading your data, or have any other registry related queries please contact support@ibdregistry.org.uk

DID YOU KNOW?

  • The RCP audit is closing in January 2017
  • The IBD Registry is now the vehicle for the biologics audit and quality improvement programme
  • Biologics audit data can be transferred from the RCP audit into the IBD Registry Web Tool or PMS before the audit closes in mid-JanuaryFor more information please contact IBDProgramme@rcplondon.ac.uk
  • As part of the transition, we encourage teams to attend 10 years of the UK IBD audit: framing the future at the RCP in London on Friday 3 February 2017. Click here to book your free ticket.

 

BE PART OF THE REGISTRY PUBLICATION COLLECTIVE

Looking ahead to 2017, we’re aiming to present the first IBD Registry data on Wednesday 21 June 16:30 – 18:00 at the BSG annual meeting, with a publication reporting on the majority of biologics patients in England at the end of the year. All sites contributing patient records will be acknowledged in presentations of Registry data. Details will be available in the new year.

 

FUNDING AVAILABLE FOR LOCAL DATA ENTRY SUPPORT

The Registry has set up an industry working group with a number of pharma companies; as well as working to secure significant funding for long term maintenance of the registry, members of the industry group have generously contributed to a fund specifically to help sites with data entry. Many thanks to our colleagues at AbbVie, Allergan, Dr Falk, Janssen, Napp, Pfizer, Takeda, Tillotts and Vifor for their contributions to this fund. For more information please contact support@ibdregistry.org.uk by 20th January.

 

DID YOU KNOW?

  • Teams can participate in the IBD Registry using their own choice of data entry systems to suit local needs (including some existing local systems)
  • Being part of the IBD Registry will give teams:
    • Robust local data to manage their biologics patients and IBD service more effectively, efficiently and safely
    • Evidence to benchmark the quality of their service as part of a nation al audit of the safety and appropriate use of biologics
  • For more information on the IBD Registry, visit ibdregistry.org.uk

 

WHAT NEXT?

If you’ve registered to join the IBD Registry you will have information about what you need to do to participate. If you haven’t already done so, please register to be part of the programme using this form. For any other queries please contact support@ibdregistry.org.uk

With our thanks to you for your continued contribution to the IBD Registry,

Dr Stuart Bloom, IBD Registry Chair


Dr Fraser Cummings, IBD Registry Clinical Lead

 

KEY DATES:

  • 13 January 2017: RCP audit closes (audit data will not be accessible after this date)
  • 20 January 2017: Deadline for applications for local data entry support funding
  • 3 February 2017: 10 years of the UK IBD audit: framing the future, RCP in London
  • April / May 2017: IBD Registry Roadshow (dates and venues will be circulated soon)
  • 19-22 June 2017: BSG Annual Meeting 2017, Manchester
  • December 2017: Publication of the IBD Registry initial report

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Latest IBD Registry data submission and site numbers

As we approach the end of the year, the Registry team would like to thank all the IBD teams who have now joined the project for all their hard work. We’ve reached an important milestone in November with 20 sites now having submitted data, giving a total of 17,328 records. More records will be uploaded in December as we now have 44 teams who have completed their registration with NHS Digital. If you have data you’d like to upload and need any help at all please contact Mark at support@ibdregistry.org.uk

Altogether, 176 IBD teams from across the UK have registered to participate, and there are 78 sites ‘live’ with a system for data capture, using a variety of different data entry methods (e.g. web tool, patient management system, local system etc). If you’re in one of the teams that haven’t yet registered please contact IBDProgramme@rcplondon.ac.uk to find out more about joining in.

Important information about the transition from audit to IBD Registry

As you know, the UK IBD audit team at the Royal College of Physicians (RCP) have delivered their final report, and data collection to support audit and quality improvement in IBD is now moving to the IBD Registry. Clinical teams can participate using their own choice of data entry system to suit local needs – including some existing local systems.

The RCP Biologics web tool will be closing in mid-January. All sites who want to retain their biologics audit data should make arrangements for this to be exported. You will receive an email from the IBD audit project team at the RCP explaining how to do this. Those users who want to import this data into the IBD Registry Web Tool should contact the IBD Registry team by emailing Mark at support@ibdregistry.org.uk. The RCP biologics audit data will no longer be accessible to sites after the RCP web tool closes in mid-January.

As part of the transition, we’d really encourage teams to attend 10 years of the UK IBD audit: framing the future at the Royal College of Physicians in London on Friday 3 February 2017. The meeting will celebrate the successes of 10 years of the IBD audit programme and outline opportunities for continued quality improvement using the Registry. There will be time for networking and best practice sharing. Click here to book your free ticket

The first 30 people to register will be also eligible for a £50 reduction against their travel arrangements if booked by 15th December.  If you would like to take advantage of this early booking offer, please select the General admission – Early bird £50 voucher ticket (details on claiming this offer are provided on the ticket).

Funding for 2017/18 and letter from the BSG to NHS Trust CEOs in England

A letter was recently sent to IBD Clinical Leads at hospitals in England explaining that with the loss of NHS England funding for the IBD Biologics Audit and Quality Improvement Programme and its transfer to the Registry from February 2017, the BSG would be seeking an annual subscription payment from NHS Trusts to cover part of the cost of running the programme. The subscription has been set at £2,500 per annum, in line with other national audits. Users of the Web Tool will be asked to pay an additional £1,000 per annum. We will shortly be writing to Trust CEOs reminding them of the importance of the Biologics Audit in terms of quality and safety, and seeking their commitment to subscribe in the coming year. A copy of the letter to Clinical Leads is available on request from support@ibdregistry.org.uk

 

What to do next

If you’ve registered to join the IBD Registry you will have information about what you need to do to participate. If you haven’t already done so, please register to be part of the programme using the form here.

If you’d like more information on any aspect of joining the IBD Registry or entering data please contact support@ibdregistry.org.uk

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Upload your patient data in November!

We are asking all sites that have any patient data live on a Registry-compatible system to upload their patient data to NHS Digital (HSCIC) during November. This is really important as the BSG Trustees will be assessing BSG support for the Registry/Audit in 2017 when they have their December 2016 meeting and we want to be able to show the good progress the Registry is making by reporting the maximum possible numbers of sites contributing and the numbers of patients in the central Registry. Every upload, even if the patient numbers on your database are relatively low, will help. If you need any help at all to upload your data please contact support@ibdregistry.org.uk

 

IBD Audit Transition to IBD Registry

The UK IBD audit team at the Royal College of Physicians have delivered their final report, and data collection to support audit and quality improvement is now moving to the IBD Registry. Teams can participate using a choice of data entry systems including existing local systems. Being part of the IBD Registry will give teams:

  • Local data to manage their biologics patients and IBD service more effectively
  • The chance to be part of ongoing national audit of the safety and appropriate use of biologics and biosimilars

The goals for 2016/17 are:

  • Transfer data collection from the RCP biological therapy audit web tool, which will be closing, to the IBD Registry.
  • Develop a near-complete UK Register of IBD patients on biologics by the end of 2017

 

172 teams have now registered to be part of the project and there are 63 live sites using a variety of different data entry methods, with a further 20 in the pipeline. If you haven’t registered yet please contact IBDProgramme@rcplondon.ac.uk

 

Scotland

The first two IBD teams in Scotland are now set up to use the IBD Registry Web Tool and Ian Arnott is chairing a Delivering Outpatient Integration Together (DOIT) IBD Service Development Day in Stirling on the 30th of November, where teams can find out more about how the various IT initiatives in Scotland will help to deliver the National Blueprint for Inflammatory Bowel Disease in Scotland and feed into the UK IBD Registry.

 

New consent materials

Following the extension of our Section 251 exemption for England and Wales until May 2017, consent is assumed unless patients opt out, and data can be submitted without formal consent having been obtained. Posters must be prominently displayed in clinic so that patients know your team is participating in the IBD Registry, but this extension gives clinical teams more time to gain written consent from all their patients. Please contact Simone (support@ibdregistry.org.uk) if you need clinic posters.

Following discussions with Crohn’s and Colitis UK and CICRA, we’ve added a question to the consent form to allow for the future use of fully anonymised and aggregated data in reports to health-related companies with an interest in IBD. The new consent materials are being sent to registered users and are available here. (Advice regarding the additional consent question is included in the Guidance for Hospitals document and is being sent to those IBD Teams that have already obtained consent from some patients.)

What to do next

If you’ve registered you will have information about what you need to do to participate. If you haven’t already done so, please register to be part of the programme using the form here.

If you’d like more information on any aspect of joining the IBD Registry or entering data please contact IBDProgramme@rcplondon.ac.uk

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2016 UK IBD Audit report highlights potential huge cost savings through the use of biosimilars

The report suggests that biosimilars are safe and effective for IBD patients and if adopted can reduce the cost of treatment by half. This is the final report produced by  the UK IBD audit at the Royal College of Physicians. Data collection to support audit and quality improvement will move to the IBD Registry. Teams can participate using a choice of data entry systems including existing local systems. Being part of the IBD Registry will give teams:

  • Local data to manage their biologics patients and IBD service more effectively
  • The chance to be part of ongoing national audit of the safety and appropriate use of biologics and biosimilars

In time the Registry will become a unique resource for real-world clinical effectiveness and health economic studies in IBD care. The goals for 2016/17 are:

  • Transfer data collection from the RCP biological therapy audit web tool, which will be closing, to the IBD Registry.
  • Develop a near-complete UK Register of IBD patients on biologics by the end of 2017

Over 160 teams have now registered to be part of the project. If you haven’t registered yet and would like to, please contact IBDProgramme@rcplondon.ac.uk

 

Wales

Cwm Taf (Dr James Berrill and team) has become the first site in Wales to make a data submission, an important milestone for the UK Registry.  We’d encourage all sites to undertake their first data submission process as soon as you have a few patients on the database, so that you become familiar with the process.  If you’d like support from Mark Allan, our Registry Data Manager, to talk you through the process, he can be contacted via support@ibdregistry.org.uk

 

Scotland

IBD teams in Scotland are invited to join Ian Arnott at the Delivering Outpatient Integration Together (DOIT) IBD Service Development Day in Stirling on the 30th of November to find out how the various IT initiatives in Scotland will help deliver the National Blueprint For Inflammatory Bowel Disease In Scotland and feed into the UK IBD Registry.

 

Central Manchester University Hospitals case study

In our latest case study, Dr Karen Kemp describes the importance of identifying an IT champion to drive the process, how having one database for all their patients is saving duplication of effort and how having an incremental approach to data entry is paying off.

We’d love to hear about your experience, so if you’ve got an example of good practice or an experience others can learn from, please contact claire@dovetailstrategies.com

 

New consent materials

Following the extension of our Section 251 exemption for England and Wales until May 2017, consent is assumed unless patients opt out, and data can be submitted without formal consent having been obtained. Posters (available from simone.cort@ibdregistry.org.uk) must be prominently displayed in clinic so that patients know your team is participating in the IBD Registry, but this extension gives clinical teams more time to gain written consent from all their patients.

Following discussions with Crohn’s and Colitis UK and CICRA, we’ve added a question to the consent form to allow for the future use of fully anonymised and aggregated data in reports to health-related companies with an interest in IBD. The new consent materials are being sent to registered users and are available here. (Advice regarding the additional consent question is included in the Guidance for Hospitals document and is being sent to those IBD Teams that have already obtained consent from some patients.)

 

What to do next

If you’ve registered you will have information about what you need to do to participate.  If you haven’t already done so, please register to be part of the programme.

If you’d like more information on any aspect of joining the IBD Registry or entering data please contact IBDProgramme@rcplondon.ac.uk

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Local value of Registry data – the Dorset experience

With the launch of the IBD Registry web tool last month, we’re all set for every IBD team in the UK to join in, and to start to benefit from collecting useful local data to help deliver better patient care and support service development. Here Pearl Avery describes the approach she took to entering data on  the Infoflex PMS developed in collaboration with the IBD Registry, how she’s involving patients in the process and how she’s used the information collected in the first ten months to achieve CCG funding for the helpline for the first time in 20 years.


Over 160 teams have now registered to be part of the project. If you haven’t registered yet and would like to, please contact IBDProgramme@rcplondon.ac.uk

Wales

All the approvals for full participation by IBD teams in Wales have now been obtained and starter packs have been sent out both to hospitals that have registered to use the IBD Registry Web Tool and those who are using a locally-installed system such as the InfoFlex PMS, Emis or Rotherham.

Scotland

We’re holding a workshop for teams in Scotland to find out more about how Registry participation fits within the National Blueprint For Inflammatory Bowel Disease In Scotland. The meeting will be in Glasgow on Wednesday 2nd November from 2-6pm. To register please visit http://ibdrmeetings.eventreference.com/

Scotland and Northern Ireland

Approvals are now in place for IBD teams in Scotland and Northern Ireland to use the Web Tool, and starter packs will be sent this week to those sites who have registered to do so. Sites that have registered to participate using a locally-installed system can also begin or continue to collect patient data.  The Information Governance approvals and the data safe haven arrangements for teams in Scotland and Northern Ireland to submit data to the Registry are not yet finalised, but we’ll update you in future newsletters.

Focus on biologics

To deliver immediate local value to teams and patients, the Transition Steering Group has proposed reporting on a set of key performance indicators on biologics in this transition year, with the goal of building a UK-wide register of all people receiving biological therapies for IBD by the end of 2017. The combined UK data will become a unique resource for real-world clinical effectiveness and health economic studies in IBD care.

As a continuation of the biologics audit, the programme remains on the Quality Accounts list and the national clinical audit and patient outcomes programme (NCAPOP) in England.

New consent materials

Following the extension of our Section 251 exemption for England and Wales until May 2017, consent is assumed unless patients opt out, and data can be submitted without formal consent having been obtained. Posters (available from simone.cort@ibdregistry.org.uk) must be prominently displayed in clinic so that patients know your team is participating in the IBD Registry, but this extension gives clinical teams more time to gain written consent from all their patients.

Following discussions with Crohn’s and Colitis UK and CICRA, we’ve added a question to the consent form to allow for the future use of fully anonymised and aggregated data in reports to health-related companies with an interest in IBD. The new consent materials will be sent to registered users and are available here. (Advice regarding the additional consent question is being sent to those IBD Teams that have already obtained consent from some patients.)

What to do next

If you’ve registered you will have information about what you need to do to participate.  If you haven’t already done so, please register to be part of the programme using the form at Registration Form for participating in the IBD Registry PDF

If you’d like more information on any aspect of joining the IBD Registry or entering data please contact IBDProgramme@rcplondon.ac.uk

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IBD Registry web tool launched!

We’re delighted to announce that the web tool is now live, and the first sites are currently on track to be entering data by mid-August. We have secured the necessary permissions for hospitals in the devolved nations to access the Registry Web Tool through the N3 secure network. Outgoing president Ian Forgacs has called on all IBD teams to match the BSG’s commitment to the Registry and safeguard its success by taking part, so if you’re among the few who haven’t registered to join yet, please see the section below on what to do next.

Transition focus on biologics

To deliver local value to teams and patients, the steering group has proposed reporting on a set of 6 key performance indicators on biologics in 2016-17, with the aim of building a UK-wide register of all people receiving biological therapies for IBD by the end of 2017. The combined UK data will become a unique resource for real-world clinical effectiveness and health economic studies in IBD care.

As a continuation of the biologics audit, the programme remains on the Quality Accounts list and the national clinical audit and patient outcomes programme (NCAPOP) in England.

An important update on consent

We have received an extension of our Section 251 exemption for England and Wales until May 2017, which means that consent is assumed unless patients opt out, and data can be submitted without formal consent. Posters (available from simone.cort@ibdregistry.org.uk) must be prominently displayed in clinic so that patients know your team is participating in the IBD Registry, but this gives clinical teams more time to gain written consent from all their patients.

An additional consent question has been added to allow for the future use of fully anonymised data in reports to commercial organisations. The new consent materials will be sent to registered users during August 2016.

 

What to do next

If you’ve registered you’ll be hearing from us soon about what you need to do. If you haven’t already done so, please register to be part of the programme using the form at http://ibdregistry.org.uk/wp-content/uploads/2016/05/Registration-Form-for-participating-in-the-IBD-Registry2.pdf.

If you’d like more information on any aspect of joining the IBD Registry or entering data please contact IBDProgramme@rcplondon.ac.uk

 

 

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