Storyboard Entry Form 2015Main author: Professor Alka S AhujaEmail: alka.ahuja@wales.nhs.ukTelephone: 01633 436831

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1. Storyboard title: a clear concise title which describes the work “ABOUT ME” – A Mobile app for autism Parent, child and professional partnership to improve information sharing and support for children and young people with autism

2. Brief outline of context: where this improvement work was done; what sort of unit/department; what staff/client groups were involvedThis work was co-produced by CARIAD team (Centre for Autism Research Intervention and Diagnostic team), Aneurin Bevan University Health Board (ABUHB) along with children and young people with autism and their carers in collaboration with colleagues in education, social services, voluntary sector and technology providers.3. Brief outline of problem: statement of problem; how you set out to tackle it; how it affected patient/client care The challenges identified in diagnostic assessment of autism have been acknowledged at an international, national and regional level (NICE 2011, Autism Strategic Action Plan for Wales, 2008). Clinical experiences and locally conducted research also reflected the lack of clarity and transparency in the diagnostic process for autism and difficulties in information sharing and communication with families and professionals.

“ABOUT ME” autism passport was developed with advice and support from professionals involved in the diagnostic assessment process but most significantly was led by parents and young people.

The passport has been piloted in the autism clinics in ABUHB for over a year and outcomes suggest that this has further enhanced delivery of person centred health interventions and supported transparency and accountability in clinical practice. It was developed as a live interactive document which would continue to be evolved and modified to meet needs of the children.

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Input from young people suggests the passport should be available as a mobile app to keep abreast with technology and promote sustainability. The mobile app will allow children and families to access and share information with services especially at times of emergency e.g. visit to A&E.

4. Assessment of problem and analysis of its causes: quantified problem; staff involvement; assessment of the cause of problem; solutions/changes needed to make improvementsAutism spectrum disorders pose challenges that are often multi-faceted and sometimes complex. The nature of autism requires a range of professionals to work together to ensure that needs are properly assessed. NICE (2011) made clear recommendations as to how families could be better informed and supported through the diagnostic process.

Local experiences and research with parents and professionals also highlighted the importance of taking a ‘whole person’ approach and the need for a clear pathway and more support for families. During 2010-2011, professionals and patients were involved in a local qualitative research project on their views and experiences of the diagnostic processes used for the assessment of autism in children and young people, common themes emerged timeframe for assessment, poor communication and information sharing, parental frustration at having to repeat developmental histories and a lack of involvement in the process.

ABOUT ME was developed to address the dissatisfaction of parents and professionals with the diagnostic process around autism. It clearly describes and informs families about the diagnostic process and helps them in their journey through the assessment process. The passport enables parents and children to access, “hold” and share information and thereby reduce stress and anxiety for families and children. It provides a low cost solution to well known information sharing issues and reduces stress and anxiety for families and children. It has put the child at the centre of clinical practice.

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Professional and parental partnership has driven this initiative and has led to changes in work practice. There has been a rigorous evaluation of ABOUT ME in clinical practice over the last year, it has been a welcome initiative for parents and professionals. Feedback from professionals suggests that it enhances delivery of person centred care and supports transparency and accountability in clinical practice. The passport supports improved planning and management thereby reducing stress for everyone.

Feedback from young people suggested the next stage of the passport should be available as a mobile app. The mobile app will allow access and share information with services easily especially at times of emergency e.g. a visit to A&E. Also the young person or family would not necessarily have access to their paper version at times of emergencies and it is not always possible to carry the paper folder everywhere. The mobile app will be easily accessible for updating information, less intrusive than a paper copy and easy to back up the information should the mobile phone or tablet break down or be lost. The investment in mobile apps will also make the passport sustainable without recurring costs for printing and memory sticks.5. Strategy for change: how the proposed change was implemented; clear client or staff group described; explain how you disseminated the results of the analysis and plans for change to the groups involved with/affected by the planned change; include a timetable for changeThe CARIAD team co-created with professionals, young people with autism and their families the development and specifications for the mobile app.

Young people themselves suggested the idea and were key in the development of the layout of the app, content, colours, text were addressed in the group taking into consideration the sensory profile of young people with autism. A group of professionals from health, education, social services and the voluntary sector were also be consulted.

The service was successful in obtaining a small grant from the Techealth innovation fund last year which enabled us to start working with a young person with high functioning autism (who has a passion for computers and mobile technology) and his carer on developing a prototype mobile app for ABOUT ME. Further collaboration with technology providers Symlconnect via the success at the Health Technology Challenge has enabled decisions on the most appropriate platform for development of the app with consideration to the design, layout and options for back up of data. It has provided an opportunity to trial the mobile app and test the app under test laboratories and in real life situations e.g. clinics

As a service we are also aware that Smartphone applications are increasingly more popular but there still appears to be low level of health care professionals’ involvement in their developments and contents (Rosser 2011). This mobile app benefits not only from health care input but also user involvement.

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6. Measurement of improvement: details of how the effects of the planned changes were measuredA qualitative study was conducted by the CARIAD team to evaluate the use of the paper passport. The recurrent themes were:

Better information sharing Clarity in the process for professionals and parents Feeling of being supported and validated Timing and setting for use Desire for future improvements

The Autism Passport is acknowledged as being an innovative tool which counters the barriers of multi professional working and the study gave good insight into the benefits and challenges of the new tool with a largely positive experience.

Comment from parent interviewed for study:

“To have a story of a child and information about support groups would make it more personal for a parent”

The ‘mobile app’ will take this support one step further for families as it will feature a progress tracker about the assessment process, the outcome of the assessment process, contain a ‘profile’ of the child’s strengths, skills, impairments along with relevant information from health, social services and education. It will allow the child and their family to access and share information with services as needed and will also contain information regarding local and national support services.

It will also summarise the needs and profile of the child and have an emergency telephone number which maybe particularly helpful at times of crisis. The app can be regularly updated to ensure the information remains relevant. The information contained will support transition between services and inform services of the needs of the child/young person.

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Feedback from parents: “I do think that ABOUT ME is useful as it focuses the mind on what is positive. There was so much negativity at the point of my son's diagnosis that I would have welcomed any approach that viewed my son as a child rather than a problem.”7. Effects of changes: statement of the effects of the change; how far these changes resolve the problem that triggered the work; how this improved patient/client care; the problems encountered with the process of changes or with the changesThe investment in mobile applications for tablets and smart phones has made the passport sustainable without recurring costs for printing and memory sticks. The mobile app reduces time in duplicating history / information taking sessions. Having accurate information will mean that more suitable provision could be more easily identified and provided, which in turn will reduce anxiety and stress for the child/young person and family/carers and the number of high cost crisis situations experienced. The development of the free mobile app will make ABOUT ME easily accessible to a much wider audience not only nationally but also across the world. 8. Lessons learnt: statement of lessons learnt from the work; what would be done differently next time“ABOUT ME” mobile app development has been a challenging but rewarding project as it has put the child at the centre of clinical practice. Professional and parental collaboration has driven this initiative and has led to changes in work practice.

The development of mobile app has proven to be a catalyst for further development as this framework could be used to work with children and adults with other lifelong conditions such as epilepsy, schizophrenia, or physical conditions such as diabetes and at times of transitions or crisis.9. Message for others: statement of the main message you would like to convey to others, based on the experience describedABOUT ME will provide a low cost solution to well known information sharing issues and will reduce stress and anxiety for families and children whilst being user friendly and abreast with modern technology.10. Please summarise how your entry reflects the principles of prudent healthcare: you can find out more about prudent healthcare at http://www.prudenthealthcare.org.uk/The principles of Co- production underlie the origins and development of the mobile app ABOUT ME and its usage will promote information sharing and better communication among professionals thereby reducing the need for duplicating assessments and interventions.

It will enhance delivery of person centred health interventions and support transparency and accountability in clinical practice.

The NHS Wales Awards are organised by the 1000 Lives Improvement service in Public Health Wales.

www.1000livesi.wales.nhs.uk

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