Lessons From the Early Adopters

8/12/2019 Lessons From the Early Adopters

1/35

IBD Registry. All rights reserved ibdregistry.org.uk

Lessons from the early adopters

Dr Matthew Johnson


2/35

What will the IBD Registry

do for you

Dr. Matt W. Johnson

Tracey Price + Karen Lithgo


3/35


Affiliations

Service development support

CIMS / Infoflex

Patient Knows Best

Sponsorship for educational meetings

Warner Chilcott

MSD

Shire

Ferring

AbbVie

Almirall

3


4/35

4


5/35

28


6/35

2


7/35

7


8/35

8


9/35


10/35

10 3


11/35

11


12/35

12


13/35

13


14/35

2


15/35


16/35

16


17/35

17

The Nursing Perspective


18/35


Recent improvements ?

Generic Information Sheets

IBD-R Consent

ECCO Immunity / Vaccination

Simplification of Surgery Tab

Time line

Virtual Clinic Tab

18


19/35


Why the L&D got involved?

Large cohort of IBD patients (2850)

IBD-SSHAMP

Functional database

Audit + Research - Easy statistical analysis CCG Commissioners - Financial support

Trust Aim = Electronic (paper free) end of 2015

Improve our Service Standards / IBD - GRS

Contribute to National data

19 5


20/35


Getting started

Excel list of names + Hosp Nos - 2850

Ported over Rotherham (Ferring) Database - 1450

Data input in routine clinics follows natural history

3m = Uploaded 300 / 1400 during OPAs

Training takes 30-60mins

Cons / IBD Nurses / SpRs / Secretaries / Sx / Paeds

Accessible Trust wide

Live with PAS

20 3


21/35


Instant benefits?

Trust wide access (March 2014)

Summary page

Dashboard

Audit / Research Instantly generated letter - CCS

Finances (clinics saved = extra IBD Nurse)

21 9


22/35


Help for the future?

Checklists Immunity and Vaccination protocol (ECCO)

Initial + Pre-Biologics reviews

Worklists Colonoscopy surveillance

Multi-Disciplinary Meetings (MDTs)

National IBD Standards + IBD-GRS

Patient Satisfaction Audits

CCG Financial Support

Remote Management - IBD-SSHAMP

22 10


23/35


Financial support from CCG

IBD Advice Line = Payment if an OPA is saved 250 / 2205 x 23 = 5,700 / year

Virtual (Telephone) Clinic Tariff = 2350 patients / month at 23 each = 13,800 / year

Outcome = approx 20,000 per yearSecured funding for 1 WTE IBD Nurse

They are supporting a business case for another 2 WTE IBD Nurses basedon our IBD-SSHAMP work

23 15


24/35


25/35

25


26/35


27/35


28/35

Cost, Sustainability andDissemination

Cost Savings

IBD - R / PMS = 4,000

PKB = 3,000

Calprotectin = 24,000 (2x/y)

IBD Nurse = 30,000

Virtual OPAs = 36,000 (2x800)

OPAs 800 x 2 x 115

= 184,000

Saved colonoscopies (539)

= 42,000 -120,000

? Preventing hospital admissions ? GP visits ? Reduction in Surgery ? Reductions in opportunistic infections

Total = 97,000 Total = > 226,000

Gross Savings = 130,000 per year


29/35


Site Visit Feedback

Active Users

Luton & Dunstable

St. Georges

Norfork and Norwich

UCH

Princess Alexandra Barts and the London

(Paeds)

Visits David Barker (CEO of

CCUK)

RCP Audit Manager

29

New Users

BirminghamRoyal Berkshire

DerbyWorthingtonNottinghamSt. Helens

Barnsley? East Surrey


30/35


User Feedback QuestionsBirmingham

Actual cost was higher because because they were asked to factor in a new server and

didnt have InfoFlex. So far installation appears to be progressing well

St. Georges - S.LondonAre waiting for an upgrade of their InfoFlex 1st before they can utilise the new version

Newham - BartsStumbling block = IT engagement issues

Royal Berkshire - ReadingFunding and setting up have been relatively simple - but already had InfoFlex0.5 WTE in IBD Admin - ? To upload data

St. Helens & KnowsleyDifficulty convincing Trust about the funding for InfoFlex. IT have repeatedly delayed

deadlines as they dont see it as a priority.

UCHUsual IT issues, helped by the fact that InfoFlex was already on boardStuart Bloom is the main data inputter, finding it a little difficult in the clinic setting, butauditing is easy

30


31/35


Site Issues

Biggest stumbling block

IT = General letter of support to all CEOs

Most common question Does it help with Azathioprine monitoring ?

Most useful comment

Money saved on Secretarial Support

31


32/35


Patient Experience

I have always been so impressed with the IBD Nurses, who

always remember my colitis history

40 patient audit

- No negative comments

- No issues with data input time in clinic

I dont mind the upload in clinic because I know this informationwill be available if I have to phone up with a flare

I like the new letter system. Last time I was able to notify my GP

instantly of my medication changes Its the way forward

Its all going electronic anyway

32


33/35


Consenting

Registry Consent - Information Sheet

a) Locally held data

b) Pseudo-anonymised data upload to the National

IBD Registry

c) Pseudo-anonymised data upload for other

research projects

33


34/35


Patient Satisfaction

So far all have been happy to fully consent

With the exception of one

a) Wary of the security of his personal data

b) Consent for local held data

c) Not for Registry, Research or PKB

d) Pseudo-anonymised

34


35/35

IBD Registry All ibd i t k

Lessons From the Early Adopters

Documents