IBD in the UK improving patient outcomes and experienceDDF, London 25th June 2015

Designing patient-centred services Helen Terry Director of Policy, Public Affairs and Research, Crohns & Colitis UK

Feedback, consultation or co-design. At what point is it most useful to engage with patients to re-design services to better meet their needs?

Right from the startWhen you have formulated some ideas to explore with themWhen seeking their views on your proposalsBy asking for feedback on their experiences of existing services.

Designing Patient-centred ServicesFeedback, consultation or co-design. At what point is it most useful to engage with patients to re-design services to better meet their needs?Right from the startWhen you have formulated some ideas to explore with themWhen seeking their views on your proposalsBy asking for feedback on their experiences of existing services.

Co-designa process where professionals empower, encourage, and guide users to develop solutions for themselves.

co-design encourages the blurring of the role between user (patients) and professionals, and enables services and/or care pathways to be developed together, in partnership

by encouraging the trained designer (professionals) and the user (patients) to create solutions together, the final result will be more appropriate and acceptable to the user

the quality of design increases if the stakeholders' interests are considered in the design process.

co-design differs from participatory design in that it does not assume that any stakeholder a priori is more important than any other.

Better care for a better lifewith IBDA programme for improving the quality of care by co-designing and implementing new approaches to the management of IBD in Scotland

Multi-stakeholder collaboration, led by Crohns and Colitis UK, to co-ordinate IBD Quality Improvement across Scotland Ensuring alignment with Scottish Government prioritiesTaking the best good local initiatives in IBD and disseminating them across ScotlandPromoting collaboration and engagement with IBD Research across Scotland

Pan-Scotland IBD Care Delivery Plan Framework

IT e Health StrategyHealth EconomicsSIGN Guidance

Health Board Pilot Structure

Arena meeting, London 2014Smart phone applications

Mapping the patient journey

NHS Highland Patient Mapping

Patient Surveyhttp://www.crohnsandcolitis.org.uk/whats-new/scottish-ibd-patients-survey-results

NHS Highland IBD pilotDraft work plan produced July 14, revised 11/3/15.

Work streamDescriptionOutcomesMeasurementLeadMilestoneJobs/NotesOneEarly diagnosis - Faecal calprotectinFaecal calprotectin is a stool biomarker for gut inflammation. FC could be used to differentiate IBS from IBD patients.IBS patients could then be referred directly to dietetics. Primary care uptake IBS dietetic referral STT endoscopy use GI OPD use Colonoscopies if GP did FC % Referral GI NSTTCost incurred for FCCost incurred for IBS dieticianAll patients presenting in clinic with [X ]number of IBD symptoms to have stool specimen sent for Faecal calprotectinNo. of times advise provided to GPs to carry out FC and identify the resultNo. of referrals to IBSNo. of STT Reduction in OP clinic attendanceCost of serviceLiterature Search Community FCNHS Highland Lab FC??? Point of Care Testing for GPsProtocol FC-Results-GPSEducation GP Surgeries

TwoFast track referral and rapid access IBD services.There is a need for clear referral processes for both new and return IBD patients, 24/7. These include dedicated telephone and email communications & rapid access/One Stop clinicsin OOH referralstime for first referral from GP to clinic time to diagnosis staff costs e.g. IBD Nurses GastroMDT routinely operationalCare Navigator role in place Clinics (? Consultations)No. of OOH referralsMeasure time to diagnosis- reduce by how much? ( this can start of as a fixed number of weeks. Consider how these would be counted i.e. from symptom presentation to referral etc)CostsNo. of MDT mtgsNo. of consultationsStock take what happens nowPrioritise realistic goals- hierarchyWhat is needed to implement new service ?Start MDTThreeIBD MDTAll patients should be discussed at an IBD MDT. New diagnoses, escalation of treatment, surgery decisions, introduction and stopping of biologic drugs better monitoring of patientsShared decision making/discussionHolistic careBiologics withdrawal planSetting Up CostsNo of biologic withdrawalsPatient opinion on holistic care betterScope necessary resourcesAvailability cliniciansImplementationFourAscertaining our populationWe are uncertain about the total number of IBD patients under our care in NHS Highland (and the Western Isles). Without this information, it is impossible to plan services. We need to characterise the IBD patient population using a disease specific registryAccurate demographics of NHS Highland patient populationInformation available on no. of patients with IBD in NHS H currently being treatedAs above on drug regimeOptions appraisalCostsCloud finance through local Chapters for ALBA SoftNational RegistryPICTSALBA Soft (GP Data Mining)C&C Local Group Popularise/NotifyAdvertising campaignISD (Information Services Division)Diagnosis through Pathology

FiveMaintaining care.Multiple agencies can look after patients with long term conditions. It is desirable that IBD care is not wholly looked after by specialist doctors. Some patients would like the opportunity to use guided self management.Work needs to be performed to understand which patients are suitable for which service and to describe that service. GP-shared care arrangements Non traditional clinics with video and tele clinics( Guided self management) routine, scheduled OPD clinic appointments Joint medical/surgical/ dietetics/psych clinics transitional care clinics for juvenile onset IBDLink Nurses ?Liaison Services ?No. of:vctelephoneoutpatient clinicsDirect and indirect costs/benefits of aboveNo. joint clinics heldDirect and indirect costs of 3No. of transitional care clinicsDirect and indirect for 5.Protocol DevelopmentEducationSixDietetic service provisionDietetics has a huge role in the management of GI disease and in particular IBS/IBD. We need to work on the availability of dietetic service and on protocols for access throughout a patients journey[Cost of implementation][LPLM]SevenGuided self management and peer supportMany patients express the desire to be able to look after their own condition safely and with support, when needed. This requires a dedicated pathway and protocols to enable this to happen efficiently.Allow patients to be supported if they wish to take up self management[?] Primary & secondary care clinic appointmentsproportion of patients in our NHSH population being supported to take up self management.routine primary and secondary care clinic appointments[ES/SS]Patient EducationDesign dedicated protocol/pathway to enableRefer to recommendations [?]Whats AvailablePICTS/Smart PhonesVC

Where are we now?The report of Phase Two of the project...

The information technology infrastructure and software development related to IBD care has been identified as a significant aspect of the project and any proposed pan Scotland Delivery plan.

IBD Smart phone AppAngus J M WatsonProfessor of Colorectal SurgeryNHS Highland

More mobile phones than toilets

Smart Phones & IBDGeographically dispersed population40% Scotlands land mass330K population~600 IBD patientsRemote & Rural hospitalsRaigmore, Inverness

Daily dataData based onHarvey BradshawSimple Clinical Colitic IndexMobile phone wiped of dataData remains anonymised until it crosses NHS firewallPatients can message though the app

Focus groupsPatientsEnthusiasm & supportTransform clinical encountersReassured by being monitoredIncreased contact availabilityPotential of new technologies

StaffPatient reported data valuableIntegration of app into healthcare delivery goodapp easy to useSee the potential

Next steps for the AppLink to Scottish EPRIntegration with IBD registryData flow to ISD and HESLink with IBD portal?A hybrid system?Region wide adoptionOnline peer support group

[1] Crohns and Colitis UK Proposal to The Quality Unit, DG Health and Social Care (February 2013)[2] 2020 Vision Scottish IBD Project Outcomes DRAFT

IBD StandardOutcomesDeliverablesProject ActivityMeasurementsBetter service organisation and improved quality of clinical care and patient experience for both acute treatment and ongoing support needs as a long-term condition. All patients surveyed will report patient experience ratings as good or very good by May 2016Standard AHigh Quality Clinical CareSafe CareMaternity, mental health and primary care components of the Scottish Patient Safety Programme implemented with measureable improvementsDeveloping models for psychological interventionHigh Quality Clinical CareUnscheduled and Emergency CareOut of hospital care action planIncrease flow through the systemImprovement of patient pathway reducing pressure on A&E departments service redesignNo of patients attending A&E reduced in Pilot trials by [x]No of patients seen using vc appointments increased by [x%] in Pilot trialsHigh Quality Clinical CareCare for Multiple and Chronic IllnessesKey pressure points in the entire patient pathway for most common multiple illnesses will be identified and actions agreedIntroducing new approaches to IBD Care focused on enabling all IBD patients to live the best possible life with their condition.High Quality Clinical CarePreventionEarly detection of cancerTo increase the proportion of people diagnosed and treated in the first stage of [breast], colorectal [and lung cancer] by 25%, by 2014/15Standard BLocal Delivery of CarePrimary Care2020 Vision for expanded primary careNew models of place-based primary careIncreasing the role of Primary Care-GP engagementGP active member of project Pilot and Working Group, including IT Task groupLocal Delivery of CareIntegrated CarePreparatory work with NHS Boards, local authorities, third and independent sector and the building of effective Integrated Health and Social Care PartnershipsPublic sector reform third sector and NHS partnership

UK-Wide ambitionsCapturing lessons learned in ScotlandAdapting these to address UK-wide issuesExemplar for otherlong-term conditions

Thank you!Elaine StevenPeter CanhamShona SinclairAndrew GreavesAngus WatsonCath StansfieldPilot Working GroupsNational Steering GroupStrategic Planning and Clinical Priorities Team Scottish Government

IBD in the UK improving patient outcomes and experience

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