“Bring I.T. On” A transition service for young adults, using an electronic person-centred record

1. Sharon Levy PCR Specialist Nurse Lisa Henderson Senior Specialist Nurse Sophie Teear, Family Support Co-ordinator For further details contact Andrew H D Wynd Chief Executive chiefexec@ssba.org.uk www.ssba.org.uk “Bring I.T. On” A transition service for young adults, using an electronic person-centred record

2. Transformational Change The Project starts from the basis that all data on the PCR database is owned by the patient. All data synchronised with the main SSBA database is consented to be shared by SSBA staff. Third party data has been consented to be shared having first received patient and professional worker consent for sharing. The patient can upload additional data as and when required, ie OTC medications, still or video clips, scanned appointment letters, etc

3. Project Summary The Project is designed to deliver a unique and distinctive service to up to 60 young people aged between 12 and 18 years who are going through transition from paediatric to adult healthcare services, using Information Technology as a communication tool to improve the transition process. The project focuses on the young person taking control of the transition by accessing their own Person-Centred Record (PCR) and using telehealth, webcam conferencing and digital stories to tell and record their health and social care journey with the support of Keyworkers from SSBA and the broader Multidisciplinary team

4. Project Milestones and Measures Milestones Develop Operational Plan Design and Develop Person Centred Record Identify Patients Establish Project Advisory Group Develop and Agree Protocols with NHS Develop and gather patient information for monitoring and evaluation Measures Young People will: Take responsibility for their health and wellbeing and their health and social care records Take control of their health and social care records Better self manage their condition Have a greater sense of wellbeing Increase confidence Reduce reliance on NHS acute services

5. Innovation Young people will be in control of their health and social care record and will choose what to add to their record to make it more meaningful. Existing data stored on the SSBA database will be automatically updated into the new Person Centred Record (PCR) including diagnostic data , patient /clinician consented medical summary, CT/MRI Imaging suites, along with patients own digital Stories. The PCR will be accessed via the internet via the young persons laptop, desktop or mobile phone using secure and encrypted links.

6. Scalability The project can be easily replicated to support all young people with long term conditions. It is about empowering individuals and giving organisations the opportunity to use their combined expertise to enable people. It is about creating responsive and flexible services. The Project puts the patient at the centre of decision making and builds on the values of people working in and with NHS Scotland as well as the social care sector. It will encourage transformational change which will shift the balance of care.

7. The SSBA Person Centred Record in action

8. Sharon Levy PCR Specialist Nurse Lisa Henderson Senior Specialist Nurse Sophie Teear, Family Support Co-ordinator For further details contact Andrew H D Wynd Chief Executive chiefexec@ssba.org.uk www.ssba.org.uk “Bring I.T. On” A transition service for young adults, using an electronic person-centred record