Inflammatory Bowel Disease - Supported, Self Help and Management
Programme (IBD-SSHAMP)
Setting
The Luton and Dunstable University Hospital manages 3016 patients with
inflammatory bowel disease (IBD), most of whom are seen routinely twice a
year, costing our CCG (2x£110) £663,520 per year. The most common forms
of IBD include ulcerative colitis and Crohn’s disease, both of which tend to
have long periods of remission, interspersed with episodes of acute severe
relapse. Like many hospitals throughout UK the demand on our clinic capacity
is always challenging, and these patients utilise approximately 6032 clinic
spaces a year, so alternative management strategies were needed. Also
when our patients flare they want to be seen urgently and this frequently
requires additional urgent clinic appointment slots. On the other-hand routine
OPAs when patients are well can be frustratingly inconvenient. Whilst all IBD
patients need to be reviewed regularly, not all need or want the “red carpet”
outpatient review system.
We separated our patients into 2 different tiers of management, depending on
their service needs; those that need hospital based clinic review and those
that needed something more than discharge back to GP with self
management advice. In order to monitor and manage these patients in the
community we set up an IBD Supported, Self Help And Management
Programme (IBD-SSHAMP). This programme relies on 3 key features;a) Database - National IBD Registry
We were in the process of developing our own database, when the British
Society of Gastroenterology asked us to get involved in designing and
developing the National IBD Registry (IBD-R) and Patient Management
System (PMS). We have now ended up with something substantially more
than just a database. This system allows us to closely monitor and manage
our patients better, with electronic records and a disease summary sheet at a
click of a button. It instantly generates letters and can be used to set up
surveillance, worklists, reminders, and generates instant letters. The system is
available through any computer in the hospital and acts as our single port of
data entry.
b) Alternative Monitoring System - Virtual Clinics
Via Patients Knows Best we have been able to offer all our patients a
personalised websites that helps them monitor their symptomatic disease
activity, and using a traffic light system, notifies the hospital if there are early
indicators of a flare. Depending on their results, it will guide patients on self
management or send an alert to us in the hospital so that we can call them
and optimise their therapy. The sites allow communication between patient
and specialists from the comfort of their home, whilst at work or from
anywhere in the world provided the patient has wifi access.
c) Patient Communication Portal - Patients Knows Best
For our more stable patients we are now able to safely transfer them on to
community based care with the knowledge that we will be able to continue
close monitoring through the specialist unit. Telephone clinics are offered 2x a
year by experienced specialist IBD nurses with blood tests, faecal calprotectin
and surveillance colonoscopy organised automatically using the IBD-R.
Reported patient benefits
Empower patients’ with the confidence and knowledge to control their own
condition better
Enable early recognition of flares by patients and physicians
Provide an early alert system with instant management advice
Allow early intervention, aimed at preventing urgent outpatient
appointments/hospitalisation
Allow remote management by the specialist IBD team
Allow pre-emptive and directed individualised therapy
Reduce the number + waiting times of routine OPAs, whilst increasing clinic
capacity
Reduce the number of endoscopic procedures
Improve patient satisfaction + reduce the personal impact of IBD
Some of the direct impact on our patients is capture on a set of video
testimonials that can be found via the link below
http://blog.patientsknowbest.com/2014/03/25/testimonies-from-luton-anddunstable-university-hospital/
We have been running our community based IBD-SSHAMP for 3 years and
now have 550 patients on to this service. In that time we have recorded just
43 flares. Most of these we have been able to deal with over the telephone by
up regulating their medication e.g. mesalazines. Of these, 16 patients needed
steroids and just 8 patients needed to be brought back to the hospital
outpatient review system. We have had no hospital admissions to-date in this
cohort of patients. Three patients chose to return back to the hospital based
outpatient review system. This is not an issue and something we leave up to
patient choice, as this form of management will not suite everyone. We do
however see this as a confluent system and fully expect patients who flare
significantly to moved back into the hospital based review setting until they
become stable enough to return back to community based (remote) care.
Reported system benefits
We started this system in 2011 and reassuringly the Department of Health
commissioned an independent review the next year (2012) of all the web
based companies providing personalised health records. PKB was voted No.
1, some distance ahead of its nearest rival, Microsoft’s HealthVault. This was
based on the fact that they remain the only UK web-based company to have
their servers hosted within the secure NHS N3 Network and they use a novel
encryption process.
In 2014 IBD-SSHAMP saved our CCG £121,000 in outpatient tariffs alone
(550 x2 x£110). The introduction of a faecal calprotectin service also saved
another £110,000 in preventing unnecessary colonoscopy.
For the Trust this had the effect of freeing up 1100 follow up clinic
appointments in 2014, helping us to dealing with the increasing demand on
our outpatient service. In addition the faecal calprotectin helped release
another 240 colonoscopy spaces, helping our Endoscopy Unit maintain its 6
week targets, passed its JAG accreditation and preserved our Bowel Cancer
Screening Service.
It remains to be seen whether the prompts to assess symptoms, the library of
34 patient information leaflets and the self help and management guidance
leads to a reduction in GP visits and long term complications, but the early
signs are positive. Sadly we still have 315 patients on an old paper based self
management programme, many of whom have been lost to follow up and
surveillance, and in 2014, 4 colorectal cancers were found in this group. We
believe this could have been prevented had they been under closer specialist
supervision and surveillance. It is our intention to move all 315 onto IBDSSHAMP once we have the necessary staffing support to do this safely. We
expect our aim to have >800 patients on IBD-SSHAMP by 2016 will be
achieved.
Future developments
We have now developed iPhone and Android apps.
The sites can now be converted into 14 different languages
We are presently awaiting the integration of these PKB sites with the National
IBD Registry. So far the “dummy” runs have gone well. Once completed we
will invite Pharma to sponsor hospitals for the 1st year so that they can
assess cost-benefit locally.
By the end of the year 12 hospitals will be using our IBD modules with PKB.
By the end of the year 20 hospitals will have the National IBD Registry / PMS.
We are due to start work with the Crohn’s and Colitis UK to develop a CQUIN
for this type of Supported Self Help And Management Programme.
The Royal College of Physicians have asked if they could use IBD-SSHAMP
as one of their flagship projects to support their “Future Hospitals” policy.
Best oral award at the 2013 BSG in the Health Informatics Section
Best poster award 2014 BSG, IT Services
One of the Top 10 High Impact Innovations of 2012, at the NHS Health
Innovations Expo.
Winner of the BSG endorsed SAGE Awards for Innovation
Finalist for the BMJ Gastroenterology Team of the Year Awards 2014 + 2015
We have had over 24 UK Hospitals come to visit us and see the system in
action.
SSHAMP lends itself to the management of many chronic medical conditions.
I have just finished designing a similar system to help safely monitor and
manage our 1264 Coeliac disease patients within the community, and am due
to start working with our respiratory physicians to develop a similar module for
Bronchiectasis.
This programme has the potential of changing the way we practice medicine,
and could make routine hospital outpatient clinic visits for chronic disease, a
thing of the past.
Dr. Matt W. Johnson BSc MB BS FRCP MD
Clinical Lead for IBD and Gastroenterology
PKB - Symptoms recorded using a traffic light system
Integration between PKB and the National IBD Registry
IBD-SSHAMP - Winner of the BSG endorse SAGE Awards 2014