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

IBD Patient Portals - The Way Forward?Dr Chris CalvertRoyal Devon and Exeter NHS Foundation Trust

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Digital Technologies

Technology fully integrated Will change the way healthcare is deliveredPainfully slow adoption in the NHS

Internet Use 201484% households have Internet access74% use online services15% patients aged between 55-65 make health appointments68% used mobile devices

ONS Internet Access Households and Individuals 2014

IBD PortalProvide patients 24 hr secure access to their IBD recordBloodsClinic lettersDisease monitoring toolsSecure emailTrusted health information

IBD Portal SecureEasy & appealing to useAccurate education materialIntegrated easily into routine practice

Barriers

Potential BenefitsImprove communicationEnhance patient empowermentImproving capacity to take control of their IBD Improve knowledgePromote shared decision makingEnhance safety

Timeline of Development

Apr 2012Project commenced Apr 2013Design, implementation and testingMay 2013Recruitment commencedAug 2013Recruitment stoppedNov-Apr 2014Evaluation

Results75% IBD patients approached registered183 patients recruitedLogins mean 11.2, median 3Average duration of each visit over 5 min25% 0-1 times, 25% > 10 times over 6/12High levels of user satisfaction

Results90% perceived supported management32% helped with decision-making 29% shared access with family/friendUse associated with disease activityIncrease access to IBD helpline from users

5 Year Forward NHS PlanGreater involvement of patients and self-supported careEmpower patients to take greater controlBetter ways of organising careBreak down artificial barriers between 1 and 2 care Harness technology and improve access to informationEvery patient will have full access to EHRBe able to write in them!

ConclusionsEmbrace technology and look at new ways of delivering careDesign and implementation within the NHS is entirely feasibleCarefully consider barriers to implementationDo Patient Portals actually change clinical outcomes?

Special ThanksCrohns and Colitis UKRenal Patient ViewProf. Turner & Dr SimpsonRenal Patient AssociationWeb developers Solid State GroupSalford Royal HospitalIBD Nurses- Cath Stansfield, Grace Hammill & Justine NewberyProf. McLaughlin, Dr Robinson, Dr Lal IT Team Paul Creely & Usman DarsotR&D Department

IBD in the UK improving patient outcomes and experience

**Transformed how service industries work.NHS has been slow to implement changes, particularly in secondary care after the debacle of Connecting for HealthPopulation based service major advantage

Implementation of EHR in hopsitalsNew mutli-media education toolsDevelopment of registiresTrial patient portals*86% of the taotal population but only 2% contact their GP using the Internet*Functionality of an IBD Personal Record

The portal will be secure, easy to use and will provide accurate advice and linked information from reputable sources including Crohsn and colitis UK*MY IBD Portal aims to engage people with IBD and provide greater opportunities for people wanting to take a more active role in their disease management.

The system should greatly improve communication between GPs and hospitals, but even more importantly (pause) it will provide a direct link with the person with IBD.

and I hope in the proposal we have highlighted the potential benefits of such a system.

(the benefits of such a project are)

(We feel strongly that an online patient focused IBD health record with relevant information links will greatly enhance care for people with IBD.)

The project lends on the foundations of managing chronic conditions through Improving self care, patient empowerment and engaging patients in care planning are widely acknowledged as being the key to improving health outcomes and the patient experience for people with long-term conditions.MY IBD Portal will be an innovative internet-based tool for IBD Patients providing users with up-to date information about their condition. This system will allow IBD Patients to view their IBD health record securely online and obtain useful information linked to their condition. It will be secure, easy to use and will provide advice, helping patients manage their IBD.

**Fortunately there is now quite broad consensus on what a better future should be. This Forward View sets out a clear direction for the NHS showing why change is needed and what it will look like. Some of what is needed can be brought about by the NHS itself. Other actions require new partnerships with local communities, local authorities and employers. Some critical decisions for example on investment, on various public health measures, and on local service changes will need explicit support from the next government.*