Our Telehealth Journey A Paediatric Perspective The National

Our Telehealth Journey A Paediatric Perspective: The National Centre for Inherited Metabolic Disorders Dr Joanne Hughes, Consultant in Inherited Metabolic Diseases Anne Clark, Dietitican Manager, Celine Stenson and Olivia Walsh Clinical Nurse Specialists Jennifer Doyle, Clinical Informatics Manager & Telehealth Lead

Agenda v What we did v How v Outcomes (Patients and Services) v Enablers v Barriers v Lessons Learned v Discussion

Service Profile: NCIMD v The National Centre for Inherited Metabolic Disorders (NCIMD) is also known as the Metabolic Unit. v NCIMD is the tertiary care referral centre for the investigation and treatment of individuals suspected of having a metabolic disorder in Ireland. v NCIMD Temple Street provides care to approximately 1550 patients nationwide. The service is predominantly outpatient based. v The management of metabolic disorders is complex and requires input from the multidisciplinary team led by a Metabolic Consultant. A holistic and family centred approach is used by our team, which includes input from medical, nursing, dietetic, psychology, social work, laboratory staff and play specialist.

Dietician Social Work Nursing Psychology Medical Pathology Play Specialist

Our Telehealth Roadmap Specialty Deployment: • Extend to NCIMD • Lessons Learned Site Deployment Training & Testing: • MDT complete Attend Anywhere Training Proof of Concept: • MDT identify & contact Patient Cohort for POC. • Consent • Contingency Plans • Lessons Learned Policies, Procedures & Guidelines: • CIT develop checklists & supporting documentation. • CIT contribute to CHI SOP • MDT & CIT complete testing against identified workflow • CIT monitor bandwidth Planning: • Meet NCIMD MDT & Operations Teams • Identify & Map Workflow • Identify & Deploy Hardware

Outcomes Patients v Reduced requirement to travel to site and incur associated costs v Patients more relaxed in home environment v Clinicians have more time with patients v Continuity of Care v Personalised service – Home visit Service v Enhanced quality of consultation v Continuity of care v Reduction in DNA & CNA rates v 75% of all Nurse/Dietetics PKU clinic appointments are virtual video. This in turn has freed up physical space for face to face consultations

Enablers v Intuitive tool – easy to use v No requirement for patients to download application v No digital footprint v Clinician engagement v ICT v Parents are technologically competent v Availability of Attend Anywhere content on www. cuh. ie (in progress) v Communication of url via SMS for appointment reminders (in progress)

Barriers v. Firewall issues v. Impact on bandwidth v. Automated link between completion of training and issue of licence v. Access to hardware v. Parental access to technology cannot be assumed v. Lack of signed off SOP v. Parental access to appropriate private space for consultation v. Clear message on use of Attend Anywhere on personal devices (Section 38 & 39 Hospitals) v. Ability to screen share on mobile phone

Lessons Learned v. Importance of clear and consistent messaging on policies, procedures and guidelines. v. Clinician Engagement, Operations Support and ICT are intrinsic to success. v. Patients are required to be physically present for virtual video consultations. v. Contingency Plans are essential. v. Technological challenges firewall, training videos, screen sharing extensions can negatively impact on adoption. v. The importance of saying ‘Thank You’.

Questions