IBD REGISTRY REGIONAL WORKSHOP

IBD REGISTRY REGIONAL WORKSHOP TAUNTON FRIDAY 22 ND JANUARY 2016 This meetings series has been funded by Janssen, Shire Pharmaceuticals, Takeda Ltd UK and Tillotts UK Pharma. Logistics support has also been provided by Tillotts. None of the companies had any influence over programme content.

Chair: Dr Ian Shaw Gloucestershire Hospitals NHS Trust Clinical Lead, IBD QIP

Meeting objectives To provide clarity on the national plans for ongoing data collection for quality improvement in IBD To review the local benefits of IBD Registry participation for clinical teams To support the development of local action plans in the context of the IBD Registry

Agenda 2.00pm Welcome and introduc3on Chair: Dr Ian Shaw The changing IBD landscape How being part of the IBD Registry might help improve an IBD service Dr Stuart Bloom Facilitated discussion How to join the Registry Workshop 1: Local priori3es and facilita3ng Registry par3cipa3on Claire Munro Facilitated by Claire Munro & Caroline Lindholm Tea break Workshop 2: Solu3ons and ac3on plans Key message development Feedback Facilitated by Claire Munro & Caroline Lindholm Claire Munro Dr Ian Shaw 6pm Mee,ng close

Thank you to our sponsors This meeting series has been funded by: - Janssen - Shire Pharmaceuticals - Takeda Ltd UK - Tillotts UK Pharma. Logistics support has also been provided by Tillotts None of the companies had any influence over programme content.

#ibdregistry @BritSocGastro #ibdaudit @RCPLondon @CrohnsColitisUK @SBLOOM6 @dovetail_health

Where are you in the Registry journey? What Registry?! Not sure which data entry op3on to go for Trying to get the PMS Using the PMS to enter data rou3nely Using the web tool Data on all my 3,000 pa3ents entered PMS ordered but not installed yet PMS installed but nobody s using it In the process of geung access to the web tool

What are your objectives for this meeting?

The Changing IBD Landscape Dr Stuart Bloom University College Hospitals IBD Registry Chair

Inflammatory Bowel Disease (IBD) programme UK IBD Audit

Introduc9on to the IBD programme 2006-2016 The first truly na.onal audit performed within Gastroenterology Aims: 1. To assess the quality of care provided to people with IBD 2. Iden3fy priori3es for improvement

Elements of work: IBD programme Round 1 06-08 Round 2 08-10 Round 3 10-12 Round 4 12-14 Organisa3on of services ü ü ü ü Round 5 14-16 Inpa3ent care ü ü ü ü Paediatric pa3ents included ü ü ü ü Primary care perspec3ve of IBD Inpa3ent experience ü ü Biological therapies ü ü ü ü Focus on quality improvement ü

Evidence of change: IBD programme Round 1 06-08 Round 3 10-12 Inpa9ent care audit UC mortality rates have halved over 3 rounds of audit 1.7% 0.8% Significantly fewer readmissions for UC over 3 rounds of audit 51.1% 33.6% Organisa9onal audit Sites with at least some IBD nurse specialist provision 56% 78% Sites with a designated Gastroenterology ward on site 67% 93% Biological therapies audit Pa3ents entering remission (at first follow up ader 12 weeks) 62% 73% Number of adverse events reported by pa3ents (at any follow up treatment) 6% 5%

All reports, slide sets, action plans etc can be downloaded from www.rcplondon.ac.uk/ibd Total inpa3ents audited = 23,762

Where next for the IBD programme? NHS England has moved focused to other areas IBD programme entering a step down process from the na3onal clinical audit programme 2016-2017 Aim to con3nue to deliver quality improvement to the IBD community through integra3on with an IBD Registry

The future. vision for IBD audit and quality improvement Data currently captured for Biological Therapies audit on the Royal College of Physicians web tool. Sites will be asked to TRANSFER to entering data via the IBD Registry (Webtool/PMS) (dates tbc). From data captured on IBD Registry Web tool IBD audit programme will help hospital teams to make improvements in pa3ent care.

IBD Registry: helping IBD teams to make improvements in care. How? Quality improvement ini9a9ves including Training: workshops, case series Instant feedback on data entered data visualisa9on

Hospital team enters data: instant provision of performance against na9onal benchmarks

In the mean9me.. For the IBD audit please keep entering your biological therapies audit data. www.rcplondon.ac.uk/ibd Next phase of data capture ends 29 th Feb 2016. Look out for informa3on in Spring on next steps

Where next for the IBD programme? IBD Audit and the IBD Registry are currently working together to plan a long term strategy to embed the delivery of audit and quality improvement into the IBD Registry.

Pa#ents with Diagnosis Living Deceased 1600 1400 1200 1000 800 600 400 200 0 Crohn's Disease Ulcera6ve Coli6s All other diagnoses IBD Unspecified

Treatment with single agent AZA only MER only Oral MTx only INF only ADA only 300 250 200 150 100 50 0 Crohn's Disease Ulcerative Colitis All other diagnoses IBD Unspecified

Combina(on Therapy AZA and INF AZA and ADA Oral MTx and INF Oral MTx and ADA 100 90 80 70 60 50 40 30 20 10 0 Crohn's Disease Ulcera:ve Coli:s All other diagnoses IBD Unspecified

Symptom to diagnosis

GP letter & patient summary example

Data entry options IBD Registry UK IBD Registry A Central Anonymised Dataset of IBD Patients l Reports l Outputs l Analysis l Feedback l Data for Research l Quality Measures l Performance DATA SAFE HAVEN EXISTING IBD SYSTEMS IBD REGISTRY PMS LEGACY DATA MIGRATION WEB TOOL

Choose your EPR IBD Patient Management System Interfaces with hospital systems (PAS, document store, could include pathology, prescribing etc) Registry extract built in Installation and licensing costs Registry Web Tool Same data structure as PMS + Registry extract Does not interface with hospital systems (eg. PAS) At present, free to use and minimal local IT Other systems extract process built in (Eg. EMIS) or use Registry file templates to create an export.

Data entry strategies Enter a few patients in clinic each week Choose a sub-set of patients: biologics? new patients only? Admin backfill ahead of clinics Denominator population demographics and diagnosis (Initial data import is possible, but depends on the format of the original data.)

Registry PMS Local benefits Data can be entered in the course of clinical contact Better access to clinical data for managing patients growth charts can be viewed PMS supports: flow of clinical contact monitoring of blood tests and investigations multi-disciplinary team working IBD helpline calls Patient summary can be printed at end of consultation GP letters part template data, part free text

Web Tool Local benefits Data can be entered in the course of clinical contact Better access to clinical data for managing patients Web Tool supports: flow of clinical contact recording of any patient contacts worklists for monitoring blood tests, cancer surveillance etc Can print summary for patient and for hospital notes at end of consultation GP letters fixed template exported as pdf

Consent From May 2016 all patients in the Registry will need to be consented There are four separate consent questions Our experience so far suggests patients tend to consent to all

Consent 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: 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 Allows other linkages such as: cross-border activity with Wales and Scotland accessing the mortality register held by Office of National Statistics potentially other national audits such as bowel cancer.

Consent 3. Informed consent for research - 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 - 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. For more information on consent: http://ibdregistry.org.uk/resources/consent-materials/ http://ibdregistry.org.uk/information-for-patients/

IBD Registry and IBD Audit Any future funding from HQIP will be to embed quality improvement processes and support into the Registry Data collection will transfer to the Registry The RCP IBD Programme team and Registry will agree the focus of future audit topics. Registry datasets will be adapted as required. The Registry Web Tool will enable all sites in the UK to take part.

How being part of the IBD Registry might help improve an IBD service

Local benefits the Dorset experience Pearl Avery CNS

Responding to pa9ents The pa3ent management system is giving us the ability to respond to pa3ent queries effec3vely, since you have access to all the informa3on right there and then. When I get a call on the helpline it s quick and easy to see the pa3ent s history as well as colleagues comments. This helps us see the whole picture and provide bemer con3nuity of care for the pa3ent. You need to remember that oden, people have been symptoma3c for a while before they contact you for help. Having all the informa3on at your finger3ps when they do call boosts pa3ents confidence in the IBD service. In the past when pa3ents phoned we d some3mes have to arrange to phone back if it was a complex case, to give us 3me to go through the paper notes. It also impacts on pa3ent safety as it helps us make the right medica3on choices, and reduces the chance of our making silly mistakes.

Working more efficiently The IBD Registry pa3ent management system is easy to use in clinic, and can be adapted to local needs, which is a bonus. Previously we recorded informa3on in the notes, then had to enter data onto the hospital PAS, as well as write a GP lemer, which was 3me consuming for us, and inefficient for the Trust. Being able to generate GP lemers and pa3ent summaries is a big benefit. We copy and paste these into our local document system, and it s made our lemers much quicker, so the pa3ent and GP aren t having to wait weeks to hear back from us. Being able to update pa3ent records from different loca3ons allows us to be more efficient. The robust infrastructure also helps with con3nuity when colleagues are away, but also gives us a great way to demonstrate our work; for example we can easily report on the number of helpline calls received, the 3me it took to respond, and the number of clinic appointments or A&E visits saved.

Sta3s3cs From Helpline Calls Taken in 4 months 653 Calls answered directly 138 Visits saved 149 GP 106 A+E 2 OPA 40 Admission 1

Planning and resourcing the service Once we ve registered all our pa3ents we ll have a clear picture of our popula3on, which will allow us to resource effec3vely; for example, by making sure we ve got sufficient nurse specialists to meet the IBD Standards. Up to now we ve made an es3mate based on our catchment popula3on and the average incidence of IBD in the popula3on to corroborate the data laboriously recorded in a spreadsheet. Being part of the Registry will not only allow us to define our popula3on more accurately but also compare our incidence and outcomes with services in other parts of the UK. I can see benefits for the local health economy too: care is less expensive when pa3ents are well managed, and you can only do that with a well-run service.

How to join the IBD Registry Claire Munro Communications Lead, IBD Registry

STEPS TO JOINING THE IBD REGISTRY INITIAL ENQUIRY TO REGISTRY REGISTRY SENDS "INFORMATION PACK [contains info on steps to joining] Business case Informa3on for Caldicom Guardians on par3cipa3ng in the IBDR and registering with HSCIC Sample screenshots, lemers & reports Technical overview Consent materials REGISTRATION FORM TO COMPLETE & RETURN HOSPITAL COMPLETES & RETURNS REGISTRATION FORM INTERNAL APPROVALS, E.G. CALDICOTT GUARDIAN, IT ETC REGISTRY SENDS RELEVANT GETTING STARTED PACK" SYSTEM (PMS/ WEB TOOL) IMPLEMENTATION ESTABLISH PATIENT CONSENT PROCESS Welcome lemer Contacts & support Checklist Mandatory data items Quick start guide for PMS/ web tool How to submit your data (including registering with HSCIC) HOSPITAL: ORDERS PMS/ REGISTERS FOR WEB TOOL/ CHOOSES OTHER OPTION CALDICOTT GUARDIAN APPROVAL FOR DATA UPLOAD TO HSCIC PLAN TEAM APPROACH TO DATA COLLECTION ENTER DATA SUBMIT DATA TO HSCIC

Contact Simone Cort at the BSG simone.cort@ibdregistry.org.uk www.ibdregistry.org.uk

Local priorities and facilitating IBD Registry participation Caroline Lindholm & Claire Munro Dovetail

Local priorities & facilitating Registry participation Where are we going? Your vision Why? How will being part of the Registry help us What? Priori.es and goals Sor3ng out the How? What s stopping us from achieving our goal? Ac3on planning Prac.cal solu.ons: short and long-term ac.ons

1. Individually, on a post-it note, write down your vision for your IBD service over the next 3 years WRITE BIG LIKE THIS not small like this

2.Individually, on a post-it note, complete this sentence: The main difference being part of the IBD Registry could make to my service is Each person write just one difference on one post-it

3.What s my/our next goal? In clinical teams (if possible), agree the next step, e.g. business case, agree how to enter data etc

IBD REGISTRY REGIONAL WORKSHOP tea break

Supporting a local action plan Caroline Lindholm & Claire Munro Dovetail

1. In groups, list on a flip chart all the BARRIERS to achieving your goal

2. In groups, brainstorm SOLUTIONS and list them on the flip chart

3. In groups, write an action plan with a short and medium term action for each barrier and solution: What will you do? Who will do it? By when? What resources are needed?

Feedback and discussion Dr Ian Shaw

IBD Regional workshops also being held at: BIRMINGHAM Friday 5 th February Chair: Prof Tariq Iqbal DARLINGTON Tuesday 1 st March Chair: Dr John Mansfield GLASGOW Wednesday 20 th April Chair: Dr Ian Arnott

Your engagement and participation are needed right now to ensure that the benefits of the Registry are fully realised. Dr Ian Forgacs President, BSG