ibdr regional workshop: london
DESCRIPTION
IBDR Regional Workshop: LondonTRANSCRIPT
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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.
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IBD Registry. All rights reserved ibdregistry.org.uk
Chair: Dr Stuart Bloom
University College Hospitals IBD Registry Chair
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IBD Registry. All rights reserved ibdregistry.org.uk
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
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IBD Registry. All rights reserved ibdregistry.org.uk
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
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IBD Registry. All rights reserved ibdregistry.org.uk
#ibdregistry @BritSocGastro #ibdaudit @RCPLondon @CrohnsColitisUK @SBLOOM6 @dovetail_health
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IBD Registry. All rights reserved ibdregistry.org.uk
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.
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IBD Registry. All rights reserved ibdregistry.org.uk
Where are we in the Registry journey?
WhatRegistry?!Notsurewhichdataentry
op3ontogofor
TryingtogetthePMS
UsingthePMStoenterdatarou3nely
Usingthewebtool
Dataonallmy3,000pa3ents
entered
PMSorderedbutnotinstalled
yet
PMSinstalledbutnobodys
usingit
IntheprocessofgeYngaccesstothewebtool
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IBD Registry. All rights reserved ibdregistry.org.uk
Teaser campaign
Examples of outputs and potential outputs from the Registry
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IBD Registry. All rights reserved ibdregistry.org.uk
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Crohn'sDisease Ulcera6veColi6s Allotherdiagnoses IBDUnspecied
Pa#entswithDiagnosisLiving Deceased
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IBD Registry. All rights reserved ibdregistry.org.uk
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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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IBD Registry. All rights reserved ibdregistry.org.uk
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50
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Crohn'sDisease Ulcera:veColi:s Allotherdiagnoses IBDUnspecied
Combina(onTherapyAZAandINF AZAandADA OralMTxandINF OralMTxandADA
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IBD Registry. All rights reserved ibdregistry.org.uk
Symptom to diagnosis
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IBD Registry. All rights reserved ibdregistry.org.uk
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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
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IBD Registry. All rights reserved ibdregistry.org.uk
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
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IBD Registry. All rights reserved ibdregistry.org.uk
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IBD Registry. All rights reserved ibdregistry.org.uk
The Changing IBD Landscape
Richard Driscoll Development Lead
IBD Registry
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UKIBDAudit
InammatoryBowelDisease(IBD)programme
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Introduc9ontotheIBDprogramme
2006-2016
Thersttrulyna.onalauditperformedwithinGastroenterology
Aims:
1.ToassessthequalityofcareprovidedtopeoplewithIBD2.Iden3fypriori3esforimprovement
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Elementsofwork:IBDprogramme
Round106-08
Round208-10
Round310-12
Round412-14
Round514-16
Organisa3onofservices
Inpa3entcare
Paediatricpa3entsincluded
Primarycareperspec3veofIBD
Inpa3entexperience
Biologicaltherapies
Focusonqualityimprovement
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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%
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Totalinpa3entsaudited=23,762
All reports, slide sets, action plans etc can be downloaded from www.rcplondon.ac.uk/ibd
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WherenextfortheIBDprogramme?NHSEnglandhasmovedfocustootherareas
IBDprogrammeenteringastepdownprocessfromthena3onalclinicalauditprogramme
2016-2017Aimtocon3nuetodeliverqualityimprovementtotheIBDcommunitythroughintegra3onwithanIBDRegistry
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Thefuture.visionforIBDauditandqualityimprovement
DatacurrentlycapturedforBiologicalTherapiesauditontheRoyalCollegeofPhysicianswebtool.
SiteswillbeaskedtoTRANSFERtoenteringdataviatheIBDRegistry(Webtool/PMS).
FromdatacapturedonIBDRegistryWebtoolIBDauditprogrammewillhelphospitalteamstomakeimprovementsinpa3entcare.
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IBDRegistry:helpingIBDteamstomakeimprovementsincare.How?
Qualityimprovementini3a3vesincluding
Training:workshops,caseseries
Instantfeedbackondataentereddatavisualisa3on
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Hospitalteamentersdata:instantprovisionofperformanceagainstna9onalbenchmarks
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Inthemean9me..
FortheIBDauditpleasekeepenteringyourbiologicaltherapiesauditdata.www.rcplondon.ac.uk/ibdNextphaseofdatacaptureendsMonday29thFeb2016.
Lookoutforinforma3oninSpringonnextsteps
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WherenextfortheIBDprogramme?
IBDAuditandtheIBDRegistryarecurrentlyworkingtogethertoplanalongtermstrategytoembedthedeliveryofauditandqualityimprovementintotheIBDRegistry.
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IBD Registry. All rights reserved ibdregistry.org.uk
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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
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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
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IBD Registry. All rights reserved ibdregistry.org.uk
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
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IBD Registry. All rights reserved ibdregistry.org.uk
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.)
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IBD Registry. All rights reserved ibdregistry.org.uk
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
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IBD Registry. All rights reserved ibdregistry.org.uk
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
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IBD Registry. All rights reserved ibdregistry.org.uk
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
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IBD Registry. All rights reserved ibdregistry.org.uk
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.
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IBD Registry. All rights reserved ibdregistry.org.uk
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/
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IBD Registry. All rights reserved ibdregistry.org.uk
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.
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IBD Registry. All rights reserved ibdregistry.org.uk
ContactSimoneCortattheBSG
www.ibdregistry.org.uk
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IBD Registry. All rights reserved 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
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IBD Registry. All rights reserved ibdregistry.org.uk
Why?
Facilitate audit/ research Service improvement/ development How many IBD patients in your service? Duplication of info/ work Easier access to patient info
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IBD Registry. All rights reserved ibdregistry.org.uk
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IBD Registry. All rights reserved ibdregistry.org.uk
Implementation process Aug2014:Funding&ini3almee3ngwithorganisingteam&CIMS
Nov14-Feb2015Decidingsite-speciccontentrequirements
ITteammanagement(systemsinterfaceissues)
December2015-Grouptrainingandgolive!(Biologics1st)
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IBD Registry. All rights reserved ibdregistry.org.uk
Reflections Challenges?
Clinical engagement Training Cross-site IT issues Time Data entry
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IBD Registry. All rights reserved ibdregistry.org.uk
Reflections Learning points?
Team work Engagement Realistic goals One size doesnt fit all Implementation plan Time and expectations
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IBD Registry. All rights reserved ibdregistry.org.uk
Benefits and outputs
Streamline patient records Audit & research Patient safety Benchmark against standards Integrated care
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IBD Registry. All rights reserved ibdregistry.org.uk
Patient Telephone Contact
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IBD Registry. All rights reserved ibdregistry.org.uk
Patient Outpatient Contact
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Details of contact & GP letter Outcome of contact (OPA/ admission/ advice) Effective audit trail Consistent information each visit ?Help with tariff charge
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IBD Registry. All rights reserved ibdregistry.org.uk
Disease Summary Screen
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IBD Registry. All rights reserved ibdregistry.org.uk
Summary of patient contacts
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IBD Registry. All rights reserved ibdregistry.org.uk
Summary of patient contacts
MDTOutcomes
Biologicsfundingoutcomes
Outpa3ent/Telephonecontact
&outcomes
Inves3ga3onssummary
Daycasecontacts
Virtualbiologicsoutcomes
Hospitaladmissions
TrackPROMS/diseaseac3vity
trends
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IBD Registry. All rights reserved ibdregistry.org.uk
Immunisations & Screening Patient safety Incorporates routine screening Easy to audit and benchmark Fast entry and easy reporting
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IBD Registry. All rights reserved ibdregistry.org.uk
Immunity Check List
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IBD Registry. All rights reserved ibdregistry.org.uk
Biologics Audit
DatacurrentlycapturedforBiologicauditontheRCPwebtoolSiteswillbeaskedtoTRANSFERtoenteringdataviatheIBDRegistry(Webtool/PMS)DatacapturedonIBDRegistryWebtool
Improvementsinpa3entcareReducedworkload?Improvedauditpar3cipa3on
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IBD Registry. All rights reserved ibdregistry.org.uk
Audit & Research
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IBD Registry. All rights reserved ibdregistry.org.uk
Audit & Research
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IBD Registry. All rights reserved ibdregistry.org.uk
Audit & research
Only as g
ood as the
data ente
red!
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IBD Registry. All rights reserved ibdregistry.org.uk
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IBD Registry. All rights reserved ibdregistry.org.uk
How to join the IBD Registry
Claire Munro Communications Lead IBD Registry
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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
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IBD Registry. All rights reserved ibdregistry.org.uk
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IBD Registry. All rights reserved ibdregistry.org.uk
Local priorities and facilitating IBD Registry
participation
Nicola Brett & Claire Munro Dovetail
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IBD Registry. All rights reserved ibdregistry.org.uk
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
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IBD Registry. All rights reserved ibdregistry.org.uk
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
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IBD Registry. All rights reserved ibdregistry.org.uk
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
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IBD Registry. All rights reserved ibdregistry.org.uk
IBD REGISTRY REGIONAL WORKSHOP
tea break
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IBD Registry. All rights reserved ibdregistry.org.uk
Supporting a local action plan
Nicola Brett & Claire Munro Dovetail
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IBD Registry. All rights reserved ibdregistry.org.uk
Supporting a local action plan
Nicola Brett & Claire Munro Dovetail
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IBD Registry. All rights reserved ibdregistry.org.uk
Local priorities & facilitating Registry participation
Wherearewegoing?
Yourvision
Why?
HowwillbeingpartoftheRegistry
helpus
What?
Priori.esandgoals
Sor3ngouttheHow?
Whatsstoppingus
fromachievingourgoal?
Ac3onplanning
Prac.calsolu.ons:shortandlong-termac.ons
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IBD Registry. All rights reserved ibdregistry.org.uk
1. In groups, list on a flip chart all the BARRIERS to achieving your goal
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IBD Registry. All rights reserved ibdregistry.org.uk
2. In groups, brainstorm SOLUTIONS and list them on the flip chart
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IBD Registry. All rights reserved ibdregistry.org.uk
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?
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IBD Registry. All rights reserved ibdregistry.org.uk
Key messages help!
Claire Munro
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IBD Registry. All rights reserved ibdregistry.org.uk
Feedback and discussion
Dr Stuart Bloom
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IBD Registry. All rights reserved ibdregistry.org.uk
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
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IBD Registry. All rights reserved ibdregistry.org.uk
www.ibdregistry.org.uk
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IBD Registry. All rights reserved 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
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IBD Registry. All rights reserved ibdregistry.org.uk