ibdr regional workshop: london

IBD Registry. All rights reserved ibdregistry.org.uk

IBD REGISTRY REGIONAL WORKSHOP

LONDON FRIDAY 15TH 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 Stuart Bloom

University College Hospitals IBD Registry Chair


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 Welcomeandintroduc3on Chair:DrStuartBloom

2.15pm ThechangingIBDlandscape RichardDriscoll

2.55pm HowbeingpartoftheIBDRegistrymighthelpimproveanIBDservice

SisterKayGreveson

3.15pm HowtojointheRegistry ClaireMunro

3.20pm Workshop1:Localpriori3esandfacilita3ngRegistrypar3cipa3on

FacilitatedbyClaireMunro&NicolaBreQ

4.10-4.30pm Teabreak

4.30pm Workshop2:Solu3onsandac3onplans FacilitatedbyClaireMunro&NicolaBreQ

5.15pm Keymessagedevelopment ClaireMunro

5.30pm Feedback DrStuartBloom

6pm Mee2ngclose


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


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.


Where are we in the Registry journey?

WhatRegistry?!Notsurewhichdataentry

op3ontogofor

TryingtogetthePMS

UsingthePMStoenterdatarou3nely

Usingthewebtool

Dataonallmy3,000pa3ents

entered

PMSorderedbutnotinstalled

yet

PMSinstalledbutnobodys

usingit

IntheprocessofgeYngaccesstothewebtool


Teaser campaign

Examples of outputs and potential outputs from the Registry


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Crohn'sDisease Ulcera6veColi6s Allotherdiagnoses IBDUnspecied

Pa#entswithDiagnosisLiving Deceased


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Crohn's Disease Ulcerative Colitis All other diagnoses IBD Unspecified

Treatment with single agent AZA only MER only Oral MTx only INF only ADA only


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Crohn'sDisease Ulcera:veColi:s Allotherdiagnoses IBDUnspecied

Combina(onTherapyAZAandINF AZAandADA OralMTxandINF OralMTxandADA


Symptom to diagnosis

E XAM

P LE

Reproduced from the IBD Registry PMS delivered by InfoFlex

Dr Walker The Practice New Road Spinneyville Woodshire WS1 2SW Dear Dr Walker, Re: Mr Tony TEST 10/11/1975 NHS No:454 454 4545 Hosp No: L1145800 7 Lime Walk, Treetown, Woodshire, WS1 1SW Tel: 01923 898989 Type of Contact: Out Patient Visit Date of contact: 01/07/2013 Diagnosis: Ulcerative Colitis Diagnosis date: 01/12/2012 Disease extent: Ulcerative proctitis - Involvement limited to the rectum Modified UCDAI: 8 - Patient is considered to be in remission if disease score is 10. Extra GI manifestations: Joints : Arthralgia; Eye : Uveitis Disease Complications: Rectal bleeding, anaemia Surgery 10/06/2013 Colectomy & ileostomy with retained rectal stump

Medication STOPPED Dose Route Frequency Date Stop Reason Budesonide 100mg Oral Weekly 01/07/2013 Steroid induced NEW & CHANGED Dose Route Frequency Folic Acid 10mg Oral Once daily ONGOING Dose Route Frequency Pentasa Sachet 2mg Oral Twice daily ADVERSE REACTION Side Effects Date Budesonide Psychosis 01/07/2013

Disclaimer: non-IBD related medication being taken by the patient is not listed here. The following investigations have been ordered: X-Ray Abdomen, Colonoscopy Blood tests requested: Routine bloods: FBC, U&E, LFTs, CRP, ESR, Bone, Ferritin, B12, Folate Yours sincerely Dr M Jones Consultant Copies to: Hospital Notes

6. GP letter & patient summary examples: MDT letter

IBDinfopackA5drletters.indd 1 11/06/2014 10:06


These exciting developments come at a time when many changes in therapy are happening, and gives the UK the ability to measure how this impacts on real-life treatment for our patients, and drive forward meaningful improvement in patient care.

Dr Barney Hawthorne, IBD Section Chair


The Changing IBD Landscape

Richard Driscoll Development Lead

IBD Registry

UKIBDAudit

InammatoryBowelDisease(IBD)programme

Introduc9ontotheIBDprogramme

2006-2016

Thersttrulyna.onalauditperformedwithinGastroenterology

Aims:

1.ToassessthequalityofcareprovidedtopeoplewithIBD2.Iden3fypriori3esforimprovement

Elementsofwork:IBDprogramme

Round106-08

Round208-10

Round310-12

Round412-14

Round514-16

Organisa3onofservices

Inpa3entcare

Paediatricpa3entsincluded

Primarycareperspec3veofIBD

Inpa3entexperience

Biologicaltherapies

Focusonqualityimprovement

Evidenceofchange:IBDprogrammeRound106-08

Round310-12

Inpa9entcareaudit

UCmortalityrateshavehalvedover3roundsofaudit 1.7% 0.8%

SignicantlyfewerreadmissionsforUCover3roundsofaudit 51.1% 33.6%

Organisa9onalaudit

SiteswithatleastsomeIBDnursespecialistprovision 56% 78%

SiteswithadesignatedGastroenterologywardonsite 67% 93%

Biologicaltherapiesaudit

Pa3entsenteringremission(atrstfollowupafer12weeks) 62% 73%

Numberofadverseeventsreportedbypa3ents(atanyfollowuptreatment)

6% 5%

Totalinpa3entsaudited=23,762

All reports, slide sets, action plans etc can be downloaded from www.rcplondon.ac.uk/ibd

WherenextfortheIBDprogramme?NHSEnglandhasmovedfocustootherareas

IBDprogrammeenteringastepdownprocessfromthena3onalclinicalauditprogramme

2016-2017Aimtocon3nuetodeliverqualityimprovementtotheIBDcommunitythroughintegra3onwithanIBDRegistry

Thefuture.visionforIBDauditandqualityimprovement

DatacurrentlycapturedforBiologicalTherapiesauditontheRoyalCollegeofPhysicianswebtool.

SiteswillbeaskedtoTRANSFERtoenteringdataviatheIBDRegistry(Webtool/PMS).

FromdatacapturedonIBDRegistryWebtoolIBDauditprogrammewillhelphospitalteamstomakeimprovementsinpa3entcare.

IBDRegistry:helpingIBDteamstomakeimprovementsincare.How?

Qualityimprovementini3a3vesincluding

Training:workshops,caseseries

Instantfeedbackondataentereddatavisualisa3on

Hospitalteamentersdata:instantprovisionofperformanceagainstna9onalbenchmarks

Inthemean9me..

FortheIBDauditpleasekeepenteringyourbiologicaltherapiesauditdata.www.rcplondon.ac.uk/ibdNextphaseofdatacaptureendsMonday29thFeb2016.

Lookoutforinforma3oninSpringonnextsteps

WherenextfortheIBDprogramme?

IBDAuditandtheIBDRegistryarecurrentlyworkingtogethertoplanalongtermstrategytoembedthedeliveryofauditandqualityimprovementintotheIBDRegistry.

Data entry options

UK IBD RegistryA Central Anonymised Dataset of IBD Patients

DATA SAFE HAVEN

LEGACY DATA MIGRATION

EXISTING IBD SYSTEMS

IBD REGISTRY PMS

WEB TOOL

l Reportsl Outputsl Analysisl Feedbackl Data for Researchl Quality Measuresl Performance

IBD Registry

Data entry options

UK IBD RegistryA Central Anonymised Dataset of IBD Patients

DATA SAFE HAVEN

LEGACY DATA MIGRATION

EXISTING IBD SYSTEMS

IBD REGISTRY PMS

WEB TOOL

l Reportsl Outputsl Analysisl Feedbackl Data for Researchl Quality Measuresl Performance

IBD Registry

e.g. Rotherham, EMIS etc

(discounted) costs payable to supplier

currently free of charge


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.

Choose your EPR


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.


ContactSimoneCortattheBSG

[email protected]

www.ibdregistry.org.uk


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

Sister Kay Greveson IBD Nurse Specialist

Royal Free London Foundation NHS Trust


Why?

Facilitate audit/ research Service improvement/ development How many IBD patients in your service? Duplication of info/ work Easier access to patient info


Implementation process Aug2014:Funding&ini3almee3ngwithorganisingteam&CIMS

Nov14-Feb2015Decidingsite-speciccontentrequirements

ITteammanagement(systemsinterfaceissues)

December2015-Grouptrainingandgolive!(Biologics1st)


Reflections Challenges?

Clinical engagement Training Cross-site IT issues Time Data entry


Reflections Learning points?

Team work Engagement Realistic goals One size doesnt fit all Implementation plan Time and expectations


Benefits and outputs

Streamline patient records Audit & research Patient safety Benchmark against standards Integrated care


Patient Telephone Contact


Patient Outpatient Contact


Details of contact & GP letter Outcome of contact (OPA/ admission/ advice) Effective audit trail Consistent information each visit ?Help with tariff charge


Disease Summary Screen


Summary of patient contacts


Summary of patient contacts

MDTOutcomes

Biologicsfundingoutcomes

Outpa3ent/Telephonecontact

&outcomes

Inves3ga3onssummary

Daycasecontacts

Virtualbiologicsoutcomes

Hospitaladmissions

TrackPROMS/diseaseac3vity

trends


Immunisations & Screening Patient safety Incorporates routine screening Easy to audit and benchmark Fast entry and easy reporting


Immunity Check List


Biologics Audit

DatacurrentlycapturedforBiologicauditontheRCPwebtoolSiteswillbeaskedtoTRANSFERtoenteringdataviatheIBDRegistry(Webtool/PMS)DatacapturedonIBDRegistryWebtool

Improvementsinpa3entcareReducedworkload?Improvedauditpar3cipa3on


Audit & Research


Audit & research

Only as g

ood as the

data ente

red!


How to join the IBD Registry

Claire Munro Communications Lead IBD Registry

INITIALENQUIRYTO

SIMONESENDS"INFORMATIONPACK[containsinfoonstepstojoining]Businesscase Informa3onforCaldicoQGuardiansonpar3cipa3ngintheIBDRandregisteringwithHSCIC

Samplescreenshots,leQers&reportsTechnicaloverviewConsentmaterialsREGISTRATIONFORMTOCOMPLETE&RETURN

HOSPITALCOMPLETES&

RETURNSREGISTRATION

FORM

INTERNALAPPROVALS,E.G.

CALDICOTTGUARDIAN,ITETC

HOSPITAL:ORDERSPMS/

REGISTERSFORWEBTOOL/

CHOOSESOTHEROPTION

REGISTRYSENDSRELEVANTGETTINGSTARTEDPACK"WelcomeleQerContacts&supportChecklistMandatorydataitemsQuickstartguideforPMS/webtoolHowtosubmityourdata(includingregisteringwithHSCIC)

ESTABLISHPATIENTCONSENTPROCESS

SYSTEM(PMS/WEBTOOL)

IMPLEMENTATION

CALDICOTTGUARDIANAPPROVALFORDATAUPLOAD

TOHSCIC

PLANTEAMAPPROACHTO

DATACOLLECTIONENTERDATA SUBMITDATATOHSCIC

STEPS TO JOINING THE IBD REGISTRY


Local priorities and facilitating IBD Registry

participation

Nicola Brett & Claire Munro Dovetail


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.Whats 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

Nicola Brett & Claire Munro Dovetail


Local priorities & facilitating Registry participation

Wherearewegoing?

Yourvision

Why?

HowwillbeingpartoftheRegistry

helpus

What?

Priori.esandgoals

Sor3ngouttheHow?

Whatsstoppingus

fromachievingourgoal?

Ac3onplanning

Prac.calsolu.ons:shortandlong-termac.ons


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?


Key messages help!

Claire Munro


Feedback and discussion

Dr Stuart Bloom


IBD Regional workshops also being held at: CARDIFF Thursday 21st January Chair: Dr Barney Hawthorne

TAUNTON Friday 22nd January Chair: Dr Ian Shaw

BIRMINGHAM Friday 5th February Chair: Prof Tariq Iqbal

DARLINGTON Tuesday 1st March Chair: Dr John Mansfield

GLASGOW Spring 2016 Chair: Dr Ian Arnott


www.ibdregistry.org.uk


Your engagement and participation are needed right now to ensure that the benefits of the Registry are fully realised.

Dr Ian Forgacs President, BSG

ibdr regional workshop: london

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