eHealth Ireland Lighthouse Project Bipolar Disorder eHealth Ireland Lighthouse Project Improved management of Bipolar Disorder through use of information technologies in the context of an Electronic Patient Record Dr Seamus Mac Suibhne - Consultant Psychiatrist, Rick Rossiter, Service User and Ambassador for See Change, Mel McIntyre and Dr Brona O’Neill, OpenApp IT Solutions

What is Bipolar Disorder Bipolar disorder (BPD) is a common and severe mental condition. Two types of recurrence, mania and depression. One in a hundred Irish people are affected. Early warning signs (EWS) interventions, targeted at improving the recognition and self-management are intended to train people to recognise early warning signs of recurrence and to avert adverse outcomes. The Service User is a primary participant in management and early warning

Who gets bipolar disorder? 40,000 Irish people suffer from this illness 1 in 100 people. It affects men and women equally. It usually starts between puberty and the age of 40, but can begin at any age. People from all walks of life, from presidents to porters, have had this illness.

While stigma still exists, attitudes are changing and the focus is changing from secrecy and shame to recovery and hope. We need new methods to help engage with service users and their families and carers to leverage these changes

What do we need from IT? Service user centric – longitudinal view of the service user across care settings Collaboration in a virtual care environment facilitating communication across a range of provider networks Clinicians, Carers, Service User, Family, Nurse, Primary Care and GP engagement, Allied Health Professional Usability – needs to be easy to use by all Accessibility – need access from inside and outside hospitals and facilities Privacy and confidentiality in a sharing environment

Service User Centric Collaborative Environment

Service User/Carer Portal

Service user identified Clinical Portal Service user identified

Service User Centric Collaborative Environment

Bipolar Disorder Workshop Themes Governance and ethics Consent, usage and confidentiality limits Service user perceptions and expectations of the EHR General practice and nursing expectations of the EHR IT challenges

Workshop Theme 1 Governance and ethics

Governance and ethics Who owns the project Who owns the data Which bodies are responsible for Ethic approval Ongoing Review – who monitors?

Consent, usage and confidentiality limits Workshop Theme 2 Consent, usage and confidentiality limits

Consent, usage and confidentiality limits What consent is required from the service user Consent to treatment? Active consent – multiple changing models of consent? Consent to share data – anonymised/Identifiable ? What happens if consent is withdrawn Have we precedents for sharing access to confidential data Who are the users?

expectations of the EHR Workshop theme 3 Service user perceptions and expectations of the EHR

Service User/Carer Portal

Service User Engagement Push information for Learning to Patients Push elements of patient health record from clinic Care Plan, Medication, Quality of Life Charts etc Gather data from Patient Patient diary - moods, sleep - other Treatment adherence - medication, consultations Surveys and structured instruments - PROMS - Patient Reported Outcome Measures Mobile Apps - leverage existing initiatives

General practice and nursing expectations of the EHR Workshop theme 4 General practice and nursing expectations of the EHR

Service user identified Clinical Portal Service user identified

Service user identified Clinical Portal Service user identified Only accessible to Clinical personnel – members of the care team and oversight Role based access – from where ? Flexible access to data collection forms – Assessments, Treatment orders, Quality of Life Surveys, Adverse Events Access to Service User and Population reporting

Workshop theme 5 IT challenges

Service User Centric Collaborative Environment

CONSULTANT PSYCHIATRIST Séamus Mac Suibhne CONSULTANT PSYCHIATRIST St Luke's Hospital Kilkenny Mel McIntyre Dr Brona O'Neill OpenApp 189 Parnell St, D1 www.openapp.ie