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

Posted in News

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

Posted in News

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

Posted in News

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

Posted in News

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

 

 

Posted in News

BSG meeting June 2016

Join Stuart Bloom, Ian Arnott, Pearl Avery, Keith Bodger and Fraser Cummings at the BSG meeting in Liverpool next month. Delivering Quality with the IBD Registry will give you a chance to find out more about IBD Audit and IBD Registry plans as the Registry takes over from the Audit as the vehicle for ongoing data collection. The session is on Thursday 23rd June 8:45-10:15 and will include group work and discussions to give you a chance to help shape the project.

If you can’t make the Thursday session, the IBD Audit Programme and IBD Registry teams will be sharing a stand in the charities section of the exhibition throughout the conference. Do come and see us to find out more about plans for the future.

 

April data submission

We are receiving data from participating sites and will update you on the numbers next month. If you are a site that now has patient data available and would like to start submitting that to the Registry, please email simone.cort@ibdregistry.org.uk and we will support you in making the necessary arrangements.

 

Web tool update and support for local implementation

The web tool has undergone its final development and testing so that sites can use it for ongoing data collection for audit and quality improvement. It will be available next month. Starter packs have been sent to all registered sites. If you haven’t received your starter pack please contact IBDProgramme@rcplondon.ac.uk.

We have also drafted a letter which can be sent to Trust CEOs to ask for their assistance with Registry participation. The letter is signed by the BSG President, IBD Section Chair, IBD Registry Chair, IBD Audit Clinical Lead and the CEO of Crohn’s and Colitis UK. If you feel this would be helpful you can request a copy to be sent to your Trust CEO by emailing IBDProgramme@rcplondon.ac.uk.

 

Crohn’s & Colitis UK Registry Research Project

As part of Crohn’s and Colitis UK funded registry research, the team at University of Liverpool (led by Keith Bodger) has generated reports of IBD-related activity for English hospitals based on anonymous HES data. Pilot local reports have been sent to selected hospital IBD teams in a first round of consultation. The next phase of the project will share reports more widely with Registry sites. Feedback from local teams will help to shape the content of reports and explore better ways to analyse the administrative data. The Registry is working to gain permission to extend reporting to similar administrative datasets in other parts of the UK. Future linkage to Registry data will aim to maximise the value of both sources of data to support service delivery and quality improvement.

 

Anaemia project

The first patients’ data has been entered on the anaemia service evaluation pages of the web tool, demonstrating the ability to use the system for specific research or audit projects involving selected IBD Teams.

To find out more about joining the IBD Registry please contact simone.cort@ibdregistry.org.uk

Posted in News

Regional Meetings and Next Steps

Most of you who came to a regional meeting have written a local plan focusing on the next steps you need to take to join the Registry. We hope you’ve been able to put your plan into action, but if you have come up against any barriers that you think the Registry team can help you with, please don’t hesitate to get in touch via info@ibdregistry.co.uk or by emailing simone.cort@ibdregistry.org.uk

For those of you who need to write a business case, we have an example on the Registry website here.

All the presentations from the regional meetings are available here.

For those looking for slides outlining local clinical and patient benefits, the section (in any of the regional meetings slide decks) on How Being Part Of The IBD Registry Might Help Improve An IBD Service should be of use.

 

Registry Meeting in Scotland

This was to be held on 20th April, but has been postponed and will be rearranged in a few months’ time. The IBD Registry is working closely with the IBD Audit Team at the Royal College of Physicians, with key Scottish gastroenterologists and with Crohn’s and Colitis UK to deliver a coordinated approach that makes sense for Scotland in the immediate and longer term. The development of this IBD IT strategy is taking place with the support of the Scottish Government and rather than hold the meeting now, we aim to arrange it when we can give more definite information about the technical solutions and the information governance issues.

 

IBD Section Chair

Barney Hawthorne has described the IBD Registry as a chance for UK gastroenterologists to do something world-leading, in terms of gathering data in real time, to better monitor our patients’ treatment and outcomes. See the whole interview here.

 

BSG meeting in June

Join us at the BSG in Liverpool on Thursday 23rd June 8:45-10:15 for an update on all the Registry projects. More details to follow soon.

The IBD audit programme and the IBD Registry will be sharing a stand and taking the opportunity to showcase their work going forward. Please come and meet us and hear more about the future plans.

 

IBD Audit news

The UK IBD Audit is moving towards an improved system for data capture and quality improvement, using the IBD Registry. This new programme of work remains on both the quality accounts list and the national clinical audit and patient outcomes programme (NCAPOP) in England. Your ongoing participation is very important, and you should have received a registration form from the IBD Audit team at the RCP so that you can sign up to be part of the new initiative. If you have any queries about this you can contact Jessica Watts, IBDProgramme@rcplondon.ac.uk

To find out more about joining the Registry click here or email simone.cort@ibdregistry.org.uk

Posted in News

Latest data submission March 2016

We now have information from 11 hospitals on 12,246 IBD patients (up from 8 hospitals and 8,037 IBD patients last quarter). 3 additional teams have registered with HSCIC, so are ready to contribute their data next time.

We’re making steady progress with participation and importantly, we have now successfully uploaded data not only from sites using the IBD Registry Patient Management System (PMS) but also sites using the Emis system, 2 web tool sites and one hospital using an in-house database, demonstrating the infrastructure for all the different data capture options. That infrastructure will also allow us to deliver other projects.

The Registry is currently recruiting a Data Manager who will enable us to begin providing a standard report back to sites when we receive their data. Meanwhile, Keith Bodger and his team at the Department of Biostatistics at the University of Liverpool are busy analysing the Hospital Episode Statistics (HES) for IBD as part of a Crohn’s and Colitis UK research project. We will begin to see some of the results of this analysis soon; later in the year we will extract the HES data for all patients in the Registry database and be able to analyse the demographics, clinical and HES history for that group.

Colleagues at the sites have worked really hard to upload their data on time – thank you to everyone. We are happy to help any IBD team that needs support to begin collecting and submitting their data. Please contact simone.cort@ibdregistry.org.uk if you have any queries at all.

 

Posted in News

We’re recruiting a data manager

BSG Data Manager advert

Inflammatory Bowel Disease Registry

Data Manager, London

£25,000-£30,000 per annum

The British Society of Gastroenterology is an organisation and registered charity focused on the promotion of gastroenterology within the United Kingdom. The IBD Registry is a national project managed by the BSG which is creating the first ever UK-wide repository of anonymised IBD adult and paediatric data for prospective audit, service improvement and research. The IBD Registry is entering an exciting period as it opens data collection to all hospitals in the UK.

The new post of Data Manager has been created to be responsible for maintaining and updating the central database systems within the IBD Registry IT infrastructure. This will involve set up of new hospital and user registrations, user helpline enquiries and configuring the databases and reports. Training in the InfoFlex software will be provided.

Candidates should have relevant IT experience, an understanding of Data Protection and Information Governance principles, a methodical approach to work planning and time management, and good communication and team-working skills.

Click here to read the role description PDF

To apply, please send your CV and a cover letter to scort@bsg.org.uk confirming your salary expectations and current availability. Candidates must have the right to work in the UK.

Closing date: 4th March 2016. Interviews in the week beginning 7th March.

Posted in News

A reminder about consent

From May 2016 all patients in the Registry will need to be consented; there are four separate consent questions and our experience so far suggests patients tend to consent to all.

  1. Informed consent for Registry. This allows personal demographic and clinical data to be sent to the IBD Registry. If patients say NO to this then the subsequent questions are not applicable.
  2. Informed consent for linkage. This allows HSCIC to use NHS numbers to extract and link to past Hospital Episode Statistics and then repeat the extraction each year as new HES data is published. It also allows other linkages such as cross-border activity with Wales and Scotland, accessing the mortality register held by Office of National Statistics and potentially other national audits such as bowel cancer.
  3. Informed consent for research. This allows data to be used by researchers who have received Registry approval to access the Registry data.
  4. Informed consent to be contacted for future research studies. This allows data to be matched against criteria for research projects (e.g. a study into side effects from a particular type of treatment). If a patient seems eligible, HSCIC will contact their local clinical team.

There’s more information on consent at http://ibdregistry.org.uk/resources/consent-materials/and http://ibdregistry.org.uk/information-for-patients/

Posted in News