Data Linkage Between Intellectual Disability & Mental Health: Current Research and a Proposal for Integrating Data Systems between Health and the NDIS Dr Tony Florio, Clinical Coordinator Intellectual Disability & Co Existing Mental Illness, Senior Clinical Psychologist South Eastern Sydney Local Health District Mental Health Service Honorary Clinical Associate, Associate Investigator Department of Developmental Disability Neuropsychiatry School of Psychiatry, UNSW [email protected]
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Dr Tony Florio - SESLHD Mental Health Service & UNSW School of Psychiatry - Data Linkage between Intellectual Disability & Mental Health: Current Research and a Proposal for Integrating
Dr Tony Florio, Clinical Coordinator Intellectual Disability & Co Existing Mental Illness, Senior Clinical Psychologist, South Eastern Sydney Local Health District Mental Health Service & UNSW School of Psychiatry delivered this presentation at the Inaugural Integrating Mental Health into the National Disability Insurance Scheme.
This conference focuses on the latest plans to integrate mental health services into a new funding scheme and how its implementation will affect the future direction of disability policy reform for people with mental illness in Australia.
For more information about the event, please visit the conference website: http://www.healthcareconferences.com.au/mentalhealthndis
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Transcript
Data Linkage Between Intellectual Disability & Mental Health:
Current Research and a Proposal for Integrating Data Systems
between Health and the NDIS
Dr Tony Florio, Clinical Coordinator Intellectual Disability & Co Existing Mental Illness,
Senior Clinical Psychologist South Eastern Sydney Local Health District Mental Health Service
Honorary Clinical Associate,
Associate Investigator Department of Developmental Disability Neuropsychiatry
• The new National Disability Scheme will from its onset be a segregated service
• Because we choose to segregate services, data about people who access more than one service is also segregated
• In the future when the same person interacts with disability services and mental health services then data about that person and services is independently collected and stored by two or more organisations
• Disability Services and Mental Health Services are increasingly become collaborative with clients and carers
• The usually goes under the rubric of being person centred or client focused
• Services are not yet collaborating with each other.
• We do not yet have a concept of person centredness that transcends organisations. Apparently organisations can be person centred, but the “service system” as a whole cannot.
• Data reflects this reality.
– Data is segregated, so are services
– Data exists in independent streams, so do services
– Data streams go their separate ways in parallel and so do services
– Data streams don’t come together collaboratively and neither do services
• Linked WA Psychiatric (n = 236,973) and Intellectual Disability Registers (n= 11,576) (total n = 245,749)
• Found that 4,221 were on both registers.
• 31.7% of the Intellectual Disability register were also on the Psychiatric register and that 1.8% of the Psychiatric Register were on the Intellectual Disability register
• Depending upon birth cohort 3.7 to 5.2% of those with an Intellectual Disability had co-occuring schizophrenia
• Those on both registers compared to those on the psychiatric register only:
– Younger at time of first contact with psychiatric services
– Had a greater number of psychiatric in-patient admissions
– spent longer in hospital
– Depending upon birth cohort had a 2.3 or 2.3 mortality ratio
• Autism was more common among those on both registers compared to ID register alone
– Adding a fixed string to each piece of information then encrypting – stops hackers forward encrypting known information or names and then matching
• Russian doll salted encryption
– Encrypt an encryption, can add a salt values to each doll
• Time based salting
– Add the number of hours past a certain base date and time as a salt. This means that encryption is only valid within that hour. Can use a Russian doll to do this. Used in Windows network logins, known as the KEROBOS protocol.
• All these techniques guarantee privacy preservation
• Some leading work on all this at ANU, dept. of Computer Science
• Information sharing around an individual. Person-centred unification of data.
• Computer systems can exchange de-identified data packets which are then linked to identified data at its destination. Like the Personally Controlled Electronic Health Record (PCHR) extended to disability
• Communication and collaboration between the person with a disability, their carers and their service providers.
• Puts the person with a disability in control, they can grant or deny access to their information at a granular level.
• Include people with a disability and their carers by using already familiar well understood interfaces like “Facebook”.
• Allows people with a disability to choose service providers who allow them to control their own information. NGOs can include as part of their offering.