DIGITAL HEALTH > PUT TO A CITIZENS JURY PANEL HIC 2018 SYDNEY @HISA_HIC #HIC18 31 st JULY 2018 - 2PM Who owns, or who do you want to own your health and personal data?
Introduction Our Theme: Assoc Prof Terry Hannan Who owns, and who Introduction has rights to use patient data? A citizens jury Dr Louise Schaper Facilitator @louise_schaper OFFICE I FACULTY I DEPARTMENT 2
A Citizens Jury Representative forum of citizens Exploring a key priority topic Which has meaning and context By a facilitated discussion Provides an opportunity for us to listen and contribute Has been used in policy making Also Participatory Action Research (PAR) Today – forms the basis of our discussion and outcomes paper OFFICE I FACULTY I DEPARTMENT 3
Why a Citizens Jury? ‘ …despite the promised improvements with advances in technology, health care remains wasteful, inconsistent and opaque to those citizens that use and ultimately pay for it. ’ Australians receiving “appropriate” care - 57% Care delivered with NO benefits - 20-30% Annual wastage in annual health care spending $45AUD billion Professor Johanna Westbrook AIHI https://www.mja.com.au/system/files/issues/197_02_160712/run10510_fm.pdf OFFICE I FACULTY I DEPARTMENT Australia’s Health 2016 -20: AIHW 4
Why a Citizens Jury? It is about the patients who have been described as “ the most neglected part of the health care delivery system… ” [Warner Slack, CCC Harvard, Cybermedicine] “ Will be so seduced by the emerging technologies that will forget about the patient(s) .” Francois Gremy 1989 UVIC, Canada “ The patient may not seem well educated or very bright to you, but what could be more unintelligent than what we are doing?” Prof Lawrence Weed, 1989 UVIC, Canada OFFICE I FACULTY I DEPARTMENT 5
Why a Citizens Jury? After all: They are highly motivated, and if they are not, nothing works in the long run anyway. They do not charge. They even pay to help. There is one for every member of the population. OFFICE I FACULTY I DEPARTMENT 6
Our Discussion Today We are putting more and more systems in place to assist the health system to connect and work better. Known these days as digital health. We can agree that enabling the patient to manage their health and care is beneficial for all involved. Have we asked our citizens more broadly: Who owns, and who has the rights to use your patient data? And in what circumstance? OFFICE I FACULTY I DEPARTMENT 7
Examples of Good Use of Data Protect and enhance public health Develop security and confidentiality algorithms Conduct research Create and maintain terminology and representation formalisms Develop and apply decision support for health care providers Support quality of patient care Improve patient safety Manage personal health Educate and credential healthcare providers Analyse and Manage Finances Detect fraud and illicit activity Identify markets and promote sales OFFICE I FACULTY I DEPARTMENT 8
Our Prime Minister My Health terms and conditions for insurance companies to request My Health Records for claimants, Turnbull said people had an obligation to make “full disclosure” when applying for insurance. “When you take out insurance you’ve got an obligation to deal in absolute good faith, and you have an obligation now under insurance law as it’s stood for centuries to make full disclosure. If you’re seeking life insurance, for example, you’ve got to answer questions honestly that they ask you about your health, and that’s why very often life insurance companies will have one of their own doctors give you a medical check- up.” Malcom Turnbull PM. 23 July 2018 OFFICE I FACULTY I DEPARTMENT 9
Welcome to Our Citizens Jury Panel • Arjan Kumar • Sudershan Dhawan • Nicci Passmores • Alana Henderson • Nikhil (Nik) Nimmagadda Dr Louise Schaper Facilitator @louise_schaper OFFICE I FACULTY I DEPARTMENT 10
Discussion OFFICE I FACULTY I DEPARTMENT 11
Questions and Answers OFFICE I FACULTY I DEPARTMENT 12
Conclusions OFFICE I FACULTY I DEPARTMENT 13
Thank you and Acknowledgements Our Citizen Jury Panellists Contributors Dr Robin Mann Kathleen Yin Prof Enrico Coiera The HISA Team HIC 2018 Chair Australian Institute for Australian Institute for Health Innovation Health Innovation OFFICE I FACULTY I DEPARTMENT
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