0 DDF 2015 FULL SHOWREEL _Interactive - 20150624.ppt

7/18/2019 0 DDF 2015 FULL SHOWREEL _Interactive - 20150624.ppt

http://slidepdf.com/reader/full/0-ddf-2015-full-showreel-interactive-20150624ppt 1/172

IBD in the UK improving patient outcomes andexperience

Co-Chairs:Ian Arnott

Consultant Gastroenterologist, Edinburgh &

Clinical Lead, IBD Audit

Stuart BloomConsultant Gastroenterologist, London &

Chair, IBD Registry



Tiing Title !"ea#er$s%

'(( )elcoe & introduction Co chairs: Ian Arnott & !tuartBloo

'(* A +ision or IBD Da+id Bar#er

'* o. clinical inoration can i"ro+e uture IBD careand outcoes

/raser Cuings & 0ar /ai1

'2( Designing "atient-centred ser+ices elen Terry

'*( IBD "atient "ortals 3 the .ay or.ard4 Chris Cal+ert & Cath !tansield

5'( IBD research 6eith Bodger

5'5* 7anel discussion oderated by 8onathan /reedland 7anel: Ian ArnottCathryn Ed.ardsRo1lynn 7rescottRichard Russell

8erey Taylor

9'(( Close



#ibdintheuk



How much do you feel IBD patientoutcomes and experience haveimproved in the last years!

"igni$cantly

"%oderately

"&nly a little

"'emained about the same"Deteriorated



( )ision for IBD(chieving *xcellence

David Barker+hief *xecutive, +rohn-s and +olitis UK

+hair, IBD tandards .roup



( world class level of care and

treatment for anyone with IBDwherever they live in the UK

A le+el o ser+ice .e .ould .ant or our o.n lo+ed

ones $sons, daughters, others, athers etc%

What we want. . .



De$ning excellence

The defnition o quality in health care,enshrined in law, includes three key aspects: -

3 patient saety

3 clinical eectiveness

3 patient experience

A high quality health serviceexhibits all three

NHS Five Year Forward View – Oct 2014



S p e c i a l i s t

n u r s e s

Access t o t r eat ment s

Access

to

ser v ices

P r e s c r i p t i o n

c h a r g e s

. . .plus many others

De$ning excellence



De$ning excellence



;

De$ning excellence



/oll

0hich of the following have made thebiggest di1erence in driving excellencein care!

23 Introduction of the IBD tandards

43 IBD (udit

53 Developing our own 6uality improvement

programme locally73 Involving patients in the development of services

3 IBD nurses

83 Better use of technology to collect and assess

clinical data and patient outcomes



/oll

If you could only use one 9tool- tomeasure: benchmark 9excellence- inyour IBD ervice, what would it be!

23 IBD (udit

43 IBD tandards

53 ;I+* <uality tandard

73 'egular collection and assessment of clinicaldata and patient outcomes:satisfaction

3 ;one of the above



+reating excellence

Clinicians 7atients

< ;



/oll

%aking the UK IBDtandards a reality in allIBD ervices across the

UK will re6uire= %ore consultants

%ore specialist nurses

(ccreditation of IBD services ( redesign of your local IBD

service

( miracle



>hank ?ou

!t takes ti"e to

create excellence#! it could be donequickly "ore

people would do it$ @ohn 0ooden

Basketball coach



IBD in the UK

improving patient outcomes andexperience



= IBD Registry' All rights reser+ed ibdregistry'org'u#

o. Clinical Inoration Can

I"ro+e /uture IBD Care and0utcoes

Dr /raser Cuings

Clinical Lead >6 IBD RegistryConsultant Gastroenterologist >ni+ersity

os"ital !outha"ton ?! /T




@uestions

Do you ha+e a eans o data ca"ture .hich allo.syou to easily obtain your colonosco"y caecalintubation rate4es?o

Do you ha+e a eans o data ca"ture .hich allo.s

you to easily obtain your ean coort score orcolonosco"y4es?o

Are your endosco"y GR! outcoes "art o your

annual a""raisal docuentation4es?o




@uestions

Do you ha+e a syste or identiying "atients .hoha+e been on steroids or 9 onths4es?o

Do you ha+e a robust syste or Iunoodulator

onitoring4es?o

Do you ha+e a syste or initiating and onitoring"atients on biologics4

es?o




7oint o care data entry systes CI! 7atient anageent !yste

IBD Registry )eb Tool

AscribeEis gastroenterology syste




IBD 7! /unctions

7atient !uary

DT

/lareline

?ursing su""ort Drugs

3 Biologics

3 I onitoring 3 !teroids

3 *-A!A

Cancer !ur+eillancesyste

Bones

Letters 3 G7

3 7atient !uary,inoration etc'

Firtual clinics




IBD Anaeia 7roect

Deterine le+el o ser+ice and treatent IBD "atients

recei+e .ith res"ect to iron deiciency

0ut"uts

3 7re+alence o iron deiciency

3 Total iron deicit

3 Treatent in an IBD out"atient "o"ulation

3 * centres, ( consecuti+e >C and ( CD "atients each




Conclusions

o. do you use data4

Can you use it ore eecti+ely to i"ro+e:

3 7atient outcoes4

3 @uality o "atient care4 3 !er+ice de+elo"ent4

3 Research4

)hat are the barriers to this4 ...'ibdregistry'org'u#



IBD in the UK

improving patient outcomes andexperience



2H

Mr Omar Faiz+onsultant +olorectal urgeon A enior ecturert %ark-s Hospital A Imperial +ollege, ondon

+hair of (+/.BI Ileal /ouch 'egistry



*(



*

>he origins of outcomes



>he origins of outcomesmeasurement

/lorence ?ightingale)illia /arr

‘....we do not want impressions, we want facts’

>he era of public reporting



>he era of public reporting

State of New York

adult cardiac ypass

surgery

- A 2( reduction in ris#

adusted ortality .as

obser+ed .ithin 2 years

ollo.ing "ublic

re"orting

Data reporting is dynamic



Data reporting is dynamic

90hen performance is measured,performance improves3 0henperformance is measured and reported,

the rate of performance accelerates3-

Tho"as % &onson

*2



**

OPTION 1 – CENT!"IS!TION OF



C!E >he volume outcome e1ect in surgery

Large effect 0eso"hagus

7ancreas

Lung

Less effect Colon

6idney

!toach

*J



Volume analysis of outcome following

restorative proctocolectomy.

British Journal of Surgery 200

! Burns" A Bottle" P Aylin" S #lark" P $ekkis" A %ar&i" '( Nicholls" ) *ai&

ong term outcome in



ong term outcome in*ngland

Burns !, et al. Br J Surg 20

?;*,KK "ouch

"rocedures

Is it really all about volume!



Is it really all about volume!

OPTION 2 – #$!"ITY



J(

"r #tul $awande %"

#IMPOVEMENT



J



J5

OPTION %& EPOTIN'



O$TCOME

J9H(-day electi+e ortality

C0?CER?!-0nly electi+e-0nly

"erio"erati+e-ay relect

hos"itals

- Better than

surgeon

-Doesnt account

or case-iM



&#fter all, in my view, if you

can't descri(e what you'redoing and define how well

you're doing it, you have no

right to (e doing it at all)

Bruce +eogh

%edical "irector of the *ational +ealth Service in !ngland



Ai o the 7ouch Registry

‘‘o improve standards in ileal pouch surgery

through a process of continuous national auditof activity and outcome in an o(servational

registry)



7ouch acti+ity

N* surgical teas

HH hos"itals logged on the syste

59N9 cases subitted to the database $dating toHKK%

!ince re-launching H( and (( R7Cs subitted in5(( & 5( $E! data 9J and 95K%'

?o. reached 9,((( casesOOO

7riary "ouch surgery -



y " g ydiagnosis

0 tcoe "o ch ail re



0utcoe 3 "ouch ailure



JH



K(



K

!uary



!uary

IBD !tandards

IBD Audit & @I7

- IBD Registry dat- E! data

- 7ouch Registry

Than# you



K9

PI+e u""ed y gae' ?o. u" yoursO

-at -aulsen american satirist /21//

Than# you



K2



IBD in the UK improving patient outcomes and

experience



Feed(ac)* co+,-.tatio+ or co/de,i+& !twat oi+t i, it mo,t -,e3-. to e+aewit atie+t, to re/de,i+ ,ervice, to(etter meet teir +eed,

'ight from the start0hen you have formulated some ideas toexplore with them

0hen seeking their views on your proposalsBy asking for feedback on their experiencesof existing services3



5e,i+i+ Patie+t/ce+tred



5e,i+i+ Patie+t/ce+tredService,

Ceedback, consultation or codesign3 (twhat point is it most useful to engage withpatients to redesign services to better

meet their needs!

23 'ight from the start

43 0hen you have formulated some ideas to

explore with them53 0hen seeking their views on your proposals

73 By asking for feedback on their experiences ofexisting services3



Co/de,i+

a process where professionals empower, encourage, andguide users to develop solutions for themselves3

codesign encourages the blurring of the role between userEpatientsF and professionals, and enables services and:or

care pathways to be developed together, in partnership

by encouraging the trained designer EprofessionalsF and theuser EpatientsF to create solutions together, the $nal resultwill be more appropriate and acceptable to the user

the 6uality of design increases if the stakeholdersG interestsare considered in the design process3

codesign di1ers from participatory design in that it doesnot assume that any stakeholder a priori is more important

than any other3

6etter care 3or a (etter .i3e



6etter care 3or a (etter .i3ewit I65

( programme forimproving the 6ualityof care by codesigning andimplementing newapproaches to the

management of IBDin cotland



%ultistakeholder collaboration, led by+rohn-s and +olitis UK, to coordinate IBD<uality Improvement across cotland

*nsuring alignment with cottish.overnment priorities

>aking the best good local initiatives inIBD and disseminating them across

cotland /romoting collaboration and engagement

with IBD 'esearch across cotland

Pa+ Scot.a+d I65 Care5e.iver7 P.a+

B tt O t C f I$ e ,ealth



Pa+/Scot.a+dI65 Care5e.iver7 P.a+Framewor)

Better Out Comes forPatients

+o designedservice

mapping

erviceredesign

/ilot workstreams

/ilotoutcomes

$8 Sta+dard, 3orI+9ammator7 6owe.5i,ea,e

Pi.ot :or)i+'ro-,

IT Ta,)'ro-

!-dit

Natio+a. M-.ti/,ta)eo.der Steeri+

'ro-

I65N-r,e,

Part+er,e&& TOC

I$ e ,ealth

Strategy

,ealth

!conomics

SI-N -uidance

Hea.t 6oard Pi.ot Str-ct-re



Hea.t 6oard Pi.ot Str-ct-re

Pi.ot :or)i+'ro-

"oca. Patie+te

C.i+icia+,

N-r,e

'P

5ieticia+

Hea.t 6oard

Steeri+'ro- e

t h li ti



Arena eeting, London 5(2

mart phone applications

Mai+ te atie+t ;o-r+e7



Mai+ te atie+t ;o-r+e7

NHS Hi.a+d Patie+t Mai+



7atient !ur+ey



7atient !ur+ey

htt":...'crohnsandcolitis'org'u#.hats-ne.scottish-ibd-"atients-sur+ey-results

NHS Hi.a+d I65 i.ot



:or) ,tream 5e,critio+ O-tcome, Mea,-reme+t "ead Mi.e,to+e <o(,=Note,

O+e Ear.7 dia+o,i, /Faeca. ca.rotecti+

Caecalcalprotectin is astool biomarkerfor gutinammation3

C+ could beused todi1erentiate IBfrom IBDpatients3IB patientscould then bereferred directly

to dietetics3

J /rimary careuptakeJ IB dieteticreferral >>endoscopy use

.I &/D use+olonoscopiesif ./ did C+ L 'eferral .I ;->>+ost incurredfor C+

+ost incurredfor IB dietician

23 (ll patientspresenting inclinic with MNOnumber ofIBDsymptoms tohave stoolspecimensent for

Caecalcalprotectin43 ;o3 of times

adviseprovided to./s to carryout C+ andidentify theresult

53 ;o3 ofreferrals toIB

73 ;o3 of >>3 'eduction in

&/ clinicattendance

83 +ost ofservice

23 iterature earchP+ommunity C+

43 ;HHighlandab C+

53 !!! /ointof +are

>estingfor ./-s

73 /rotocolPC+'esults./-

3 *ducation P./urgeries

NHS Hi.a+d I65 i.otDraft work plan produced @uly 27, revised 22:5:23

in &&H referralsti f $ t f l

23 ;o3 of &&Hreferrals

43 %easure timet di i

23 tock takewhathappens



Two Fa,t trac) re3erra.a+d raid acce,,I65 ,ervice,&

>here is a needfor clear referralprocesses forboth new andreturn IBD

patients, 47:Q3 >hese includededicatedtelephone andemailcommunicationsA rapidaccess:&ne topclinics

time for $rst referralfrom ./ to clinic

time to diagnosisJ sta1 costs e3g3J IBD ;ursesJ .astro%D> routinelyoperational+are ;avigator role inplaceJ +linics E!+onsultationsF

to diagnosisreduce by howmuch! E thiscan start of asa $xed numberof weeks3+onsider howthese would becounted i3e3from symptompresentation toreferral etcF

53 +osts73 ;o3 of %D>

mtgs3 ;o3 of

consultations

now43 /rioritise

realisticgoalshierarchy

53 0hat isneeded toimplementnewservice !

73 tart %D>

Tree I65 M5T

(ll patients should bediscussed at an IBD%D>3 ;ew diagnoses,escalation oftreatment, surgerydecisions, introductionand stopping ofbiologic drugs

J better monitoring of patientsJhared decision

making:discussionJHolistic careBiologics withdrawalplanetting Up +osts

23 ;o of biologicwithdrawals

43 /atient opinionon holistic carebetter

23 copenecessaryresources

43 (vailabilityclinicians

53 Implementation

Fo-r !,certai+i+ o-ro-.atio+

0e are uncertainabout the totalnumber of IBDpatients under ourcare in ;H HighlandEand the 0esternIslesF3 0ithout thisinformation, it is

impossible to planservices3 0e need to

(ccuratedemographics of ;HHighland patientpopulation

23 Informationavailable onno3 of patientswith IBD in;H Hcurrently beingtreated

43 (s above ondrug regime

23 &ptionsappraisal

43 +osts53 +loud

$nancethroughlocal+hapters for(B( oft

;ational 'egistry/I+>

(B( oft E./Data %iningF

%ultiple agencies can

J ./shared carearrangements

23 ;o3 of=a3 vc

23 /rotocolDevelopment



Five Mai+tai+i+ care&

p glook after patients withlong term conditions3 Itis desirable that IBDcare is not whollylooked after byspecialist doctors3ome patients would

like the opportunity touse guided selfmanagement30ork needs to beperformed tounderstand whichpatients are suitablefor which service andto describe thatservice3

gJ ;on traditionalclinics with video and

tele clinicsEJ .uided selfmanagementF routine, scheduled

&/Dclinic appointments

J @ointmedical:surgical:

dietetics:psychclinicsJ transitional careclinics

for Ruvenile onsetIBDink ;urses !iaison ervices !

b3 telephone

c3 outpatient clinics

43 Direct andindirectcosts:bene$ts

of above53 ;o3 Roint clinics

held73 Direct and

indirect costs of5

3 ;o3 oftransitionalcare clinics

83 Direct andindirect for 3

p43 *ducation

Si? 5ietetic ,ervicerovi,io+

Dietetics has a hugerole in themanagement of .Idisease and inparticular IB:IBD3 0eneed to work on theavailability of dieteticservice and onprotocols for accessthroughout a patient-s Rourney

M+ost ofimplementationO

M/-%O

Seve+ '-ided ,e.3ma+aeme+t a+d

eer ,-ort

%any patients expressthe desire to be able tolook after their owncondition safely andwith support, whenneeded3 >his re6uires adedicated pathway andprotocols to enable thisto happen eSciently3-

(llow patients to besupported if they wishto take u self

Jproportion ofpatients in our ;HHpopulation being supported totake

up selfmanagement3routine primary and secondary care

clinicappointments

M*:O 23 /atient*ducation

43 Designdedicatedprotocol:pathway toenable

53 'efer torecommendations M!O

73 0hat-s(vailable3 /I+> mart

0here are we now!



0here are we now!

>he report of /hase >wo of the proRect333

The inor"ation technologyinrastructure and sotwaredevelop"ent related to !'( care has

been identifed as a signifcant aspecto the pro)ect and any proposed pan%cotland (elivery plan#$



I65 Smart o+e !



I65 Smart o+e !

Angus 8 )atson

7roessor o Colorectal

!urgery

?! ighland



More mo(i.e o+e, ta+ toi.et,



mart /hones A IBD

.eographicallydispersed population

7TL cotland-s land

mass 55TK population

8TT IBD patients

'emote A 'uralhospitals

'aigmore, Inverness

Daily data



Daily data

Data based on

3 Harvey Bradshaw

3 imple +linical +olitic Index %obile phone wiped of data

Data remains anonymised until it

crosses ;H $rewall /atients can message though the app



Cocus groups



Cocus groups

/atients 3 *nthusiasm A

support

3 >ransform clinical

encounters

3 'eassured by beingmonitored

3 Increased contact

availability

3 /otential of newtechnologies

ta1 3 /atient reported

data valuable

3 Integration of app

into healthcaredelivery good

3 9app- easy to use

3 ee the potential

;ext steps for the (pp



;ext steps for the (pp

ink to cottish */'

Integration with IBD

registry Data ow to ID and H*

ink with IBD portal!

3 ( hybrid system! 'egion wide adoption

&nline peer support group

I65 Sta+dard O-tcome, 5e.ivera(.e, Pro;ect !ctivit7 Mea,-reme+t,

B tt i i ti 2 (ll ti t d ill t

Scotti, I65 Pro;ect O-tcome, 5!FT



Q Crohns and Colitis >6 7ro"osal to The @uality >nit, DG ealth and !ocial Care $/ebruary 5(9%M4O 4T4T )ision

Better service organisation

and improved 6uality of

clinical care and patient

experience for both acute

treatment and ongoing

support needs as a longterm

condition3

23 (ll patients surveyed will report

patient experience ratings as

good or very good by %ay 4T28

Sta+dard !

Hi #-a.it7 C.i+ica.

Care

afe +are

%aternity, mental health and primary carecomponents of the cottish /atient afety/rogramme implemented withmeasureable improvements

• Developing models for

psychological intervention

23

Hi #-a.it7 C.i+ica.

Care

Unscheduled and *mergency

+are

23 &ut of hospital care action plan

43 Increase ow through the system

• Improvement of patient pathway

reducing pressure on (A*

departments P service redesign

;o of patients attending (A* reduced

in /ilot trials by MxO

;o of patients seen using vc

appointments increased by MxLO in

/ilot trials

Hi #-a.it7 C.i+ica.

Care

+are for %ultiple and +hronic

Illnesses

23 Key pressure points in the entire patient

pathway for most common multiple

illnesses will be identi$ed and actionsagreed

• Introducing new approaches to IBD

+are focused on enabling all IBD

patients to live the best possiblelife with their condition3

23

Hi #-a.it7 C.i+ica.

Care

/revention *arly detection of cancer • >o increase the proportion of peoplediagnosed and treated in the $rststage of MbreastO, colorectal Mandlung cancerO by 4L, by 4T27:2

Sta+dard 6

"oca. 5e.iver7 o3 Care

/rimary +are 4T4T )ision for expanded primary care

;ew models of 9placebased- primary care

• Increasing the role of /rimary +are

./ engagement

23 ./ active member of proRect

/ilot and 0orking .roup,

including I> >ask group

"oca. 5e.iver7 o3 Care Integrated +are 23 /reparatory work with ;H Boards, localauthorities, third and independent

sector and the building of e1ective

Integrated Health and ocial +are

/artnerships

• /ublic sector reform P third sectorand ;H partnership

23

UK0ide ambitions



UK 0ide ambitions

+apturing lessonslearned in cotland

(dapting these toaddress UKwideissues

*xemplar for otherlongterm

conditions

>hank youV



>hank youV

*laine teven /eter +anham hona inclair

(ndrew .reaves (ngus 0atson +ath tans$eld /ilot 0orking .roups

;ational teering .roup trategic /lanning and +linical /riorities

>eam P cottish .overnment




experience



IBD /atient /ortals

>he 0ay Corward!

5r Cri, Ca.vert'oyal Devon and *xeter ;H

Coundation >rust

22T



Digital >echnologies



g g

>echnology fully integrated

0ill change the way healthcare is delivered

/ainfully slow adoption in the ;H

Internet Use 4T27



Internet Use 4T27 W7L households have Internet

access

Q7L use online services

2L patients aged between 8make health appointments

8WL used mobile devices

0?! Internet Access 3 ouseholds and Indi+iduals 5(2

IBD /ortal



IBD /ortal

/rovide patients 47 hr secure accessto their IBD record

3 Bloods

3 +linic letters 3 Disease monitoring tools

3 ecure email

3 >rusted health information

IBD /ortal



IBD /ortal

ecure *asy A appealing to use

(ccurate education material

Integrated easily into routine practice

Barriers



Barriers

/otential Bene$ts



Improve communication

*nhance patient empowerment

3 Improving capacity to take control oftheir IBD

3 Improve knowledge

3 /romote shared decision making

*nhance safety

>imeline of Development



>imeline of Development

(pr 4T24 /roRect commenced

(pr 4T25 Design, implementationand testing

%ay 4T25 'ecruitment commenced

(ug 4T25 'ecruitment stopped

;ov(pr 4T27 *valuation

'esults



'esults

QL IBD patients approached registered 2W5 patients recruited

ogins mean 2234, median 5

(verage duration of each visit over min

4L T2 times, 4L X 2T times over

8:24 High levels of user satisfaction

'esults



'esults

YTL perceived supportedmanagement

54L helped with decisionmaking

4YL shared access with family:friend

Use associated with disease activity

Increase access to IBD helpline fromusers

?ear Corward ;H /lan



.reater involvement of patients and self

supported care 3 9*mpower patients to take greater control-

Better ways of organising care

3 Break down arti$cial barriers between 2 and4 care

9Harness technology- and improve access toinformation

*very patient will have full access to *H' 3 Be able to write in themV

+onclusions



+onclusions

*mbrace technology and look at newways of delivering care

Design and implementation within

the ;H is entirely feasible +arefully consider barriers to

implementation

Do /atient /ortals actually changeclinical outcomes!

pecial >hanks



pecial >hanks

+rohn-s and +olitis UK 'enal /atient )iew

3 /rof3 >urner A Dr impson

3 'enal /atient (ssociation

3 0eb developers P olid tate .roup alford 'oyal Hospital

3 IBD ;urses +ath tans$eld, .race Hammill A @ustine ;ewbery

3 /rof3 %caughlin, Dr 'obinson, Dr al 3 I> >eam P /aul +reely A Usman Darsot

3 'AD Department




experience



/atient /ortals P >he 0ay

Corward!+ath tans$eld %c, Bc, ';,

;/

(dvanced /ractitioner P.astroenterology

alford 'oyal Hospitals ;H >rust

+hallenges to IBD services



+hallenges to IBD services

IBD

management

! o e h o .

. e h

a + e t

o . o r # s

a r t e

r a n d

h a r d e

r O O

0hat do people want from the;H!



;H!

Accurate and reliable inoration

I"ro+ed access to inoration

ore in+ol+eent in decisions about health

Better integration o care

(re portals the wayf d!



forward!

1& E.ectro+ic Hea.t d



ecord

2& Per,o+a. Hea.t d



ecord

%& I+3ormatio+ S7,tem



7

Bene$ts to service



IBD /ortal as a tool of selfmanagement

3 'eduction in outpatient attendances

( 5rd +heckerV >racking disease activity

3 upporting biologic re6uests

Barriers to Implementation



p

ocally 3 +onsultant time

3 %y I> knowledge

3 I> department support

/ortal proRect roll out

3 +linicians concerns regarding sharing of

information 3 ocal I> infrastructures

/atient Ceedback



Zomewhere to turn before .oogle[ ZBetter understanding of my disease including

disease location and procedures[

Z.reater understanding blood tests and results[

Intertransferable data from one medicalinstitution to another I can Rust log in anywhere[

ZI can document my medications and diseasepattern[

ZCantastic chronological database of treatments,appointments and discussions with the careteam[

Cuture /lans



'oll out the service to all patients at alford'oyal to further evaluate its impact onservices

Implement the /ortal into early adoptinghospitals

*valuate the drivers and barriers toimplementation and develop a roadmap to

facilitate national roll out ink the /ortal with the ;ational IBD

'egistry




experience



I65 e,earcKeith BodgerUniversity of iverpool



Service5e.iver

7



34s, long regarded as the

‘gold standard’ 5 have (een

put on an undeserved



put on an undeserved

pedestal. heir appearance at

the top of ‘hierarchies’ of

evidence is inappropriate.

hey should (e replaced (y a

diversity of approaches that

involve analysing the totality of

the evidence1(ase)

6(servational studies are

also useful and, with care in

the interpretation of results,can provide an important

source of evidence a(out

(oth the (enefits and harms

of therapeutic interventions)

7t is increasingly recogni8ed

Real .orld data



7t is increasingly recogni8ed

that conclusions drawn from

classical clinical trials arenot always a useful aid for

decision1ma9ing 1

assessing the value of a

drug or technology re:uires

an understanding of itsimpact on current

management in a practical,

real1life setting.



'andomi&ed

#ontrolled $rials

'eal world/

)servational data



#ost inputs

!ffectiveness of

standard care

#ontrolled $rials )servational data

!fficacy



P0S We Portal !2isting

Systems



Patient 0anagement System

1Info*le23We4ased $ool 5ocal %ataase 1e.g. 6*erring7"

Ascrie3

Hea.t a+d Socia. CareI+3ormatio+ Ce+tre

0+er+ie. o Registry data-lo. & "seudonyisation in England

I65 ei,tr7 we(



@HSCICA5ata Sa3e Have+

eceive, a+d ,e-do+7mi,e,te data B.e, 3rom o,ita.,

!..ocate, ei,tr7 ide+tiBera+d mai+tai+, data B.e

.i+)i+ NHS +-m(er a+dei,tr7 ide+tiBer

E?tract, a+d 3orward, data3rom HES a+d ONSdata,et,e&& 5eat* ca+cer* o,ita.

data etc&

5ata B.e,3rom

o,ita.,

I65 ei,tr7PMS -,i+I+3oF.e?,o3tware

Ho,ita. or 'I5et I65data(a,e

e#g# Ascribe,

*erring, +ospital

"eac7 I65data(a,e@o+ PC i+o,ita.A

:e(Too.acce,,@ei,tr7 data

,et* +atio+a.

,erver,

:e( Too.

data(a,e,Searate data(a,e 3or eacTr-,t=6oard

Patient identiable dataencrypted and accessed onlyby hospital users who then

export their data to theRegistry.

Te ei,tr75ata(a,e

3or a-dit a+d re,earc

(ll export through secure networks to H+I+3

P,e-do+7mi,e

d data B.e3rom HSCIC

"oca. Tr-,t,=6oard,

= iBD Registry, A"ril 5(*

5ata e?tractB.e, 3romwe( too.returned toTrust serverbefore upload

to !C"C.

N%



#urrent diagnosis $>C, CD or IBD->%

%ate of diagnosis

%ate of symptom onset

#onsent-related ites 8# e2tent9 7roctitis, distal, eMtensi+e

#% classify9 Location and beha+iour

Smoking status

%rugs

Admissions

Surgery

Minimum dataset




%ate of diagnosis




Smoking status

%rugs

Admissions

Surgery

Minimum dataset Hospital Episode Statistics Inpatient : %aycase !pisodes

)utpatient attendance

Accident : !mergency attendance




%ate of diagnosis




Smoking status

%rugs

Admissions

Surgery

Minimum dataset Hospital Episode Statistics Inpatient : %aycase !pisodes

)utpatient attendance

Accident : !mergency attendance

Deogra"hics



Age

Trust A

Trust B

Trust C

Trust D

Trust E

Trust /

Contacts



edication



In"atient Care



rust A

rust B

rust C

rust D

rust E



issing

cases

issing data

!elected

centres



Research Designs



(n !r) is a secure data analytics facility that will bringtogether the right mix of skilled people, with the data,analytical methods and infrastructure and tools to

provide continuous improvement and innovation *vidence produced by services can be rapidly analysed,

service improvements identi$ed and then implemented,and new evidence produced

>he whole purpose of the (rk is to fundamentally change

the relationship between service and research and howthat linkage is thought of and what it is expected to be

A data 6Ark7 for the IB%

community;



Service5e.iver

7

+onclusions



The IBD Registry oers an o""ortunity to ser+eas a "o.erul +ehicle to su""ort ser+ice deli+ery,

audit and research

A secure SAR6 to host data or real-.orld

studies 7lator or "ros"ecti+e research 3 an So-the-

shel solution

Data content, structure, ca"ture, lin#age and

su""orting analytics .ill continue to e+ol+e

6ey to success4 !ta#eholder engageent and

incenti+es




experience



7anel discussion:the IBD Fision 3

getting there ro here

0oderator9 (onathan *reedland

8onathan /reelandEMecuti+e Editor, he $uardian

Ian ArnottConsultant Gastroenterologist, Edinburgh



g , g

& Clinical Lead, IBD Audit

Da+id Bar#er Chie EMecuti+e, Crohns & Colitis >6

& Chair, IBD !tandards grou"

Cathryn Ed.ardsConsultant Gastroenterologist, Torbay os"ital, De+on

& !enior !ecretary o B!G Richard Russell

7aediatric Gastroenterologist, or# ill os"ital, Glasgo.

& "ast-Chair, B!7GA?

8erey Taylor Chie EMecuti+e, ?ational Foices

0hat will make the biggest di1erence toimproving patient care in the next 5



improving patient care in the next 5

years!

"%ore IBD nurses" >he routine capture and use of clinical data

electronically".reater political understanding and awarenessof IBD"(ctual delivery of the IBD tandards in all

services across the UK "'esearch




experience

IBD Registry



g y

!ites can register no. to use the IBDRegistry .eb tool

Registration ors a+ailable ro

!ione Cort today

sione'cortUibdregistry'org'u#

7resentations



All "resentations a+ailable no.

& +ideo ootage soon at

...'ibdregistry'org'u#



%avid Barker Chie EMecuti+e, Crohns and Colitis >6

Chair, IBD !tandards Grou"




experience

0 DDF 2015 FULL SHOWREEL _Interactive - 20150624.ppt

Documents

Transcript of 0 DDF 2015 FULL SHOWREEL _Interactive - 20150624.ppt