A Win:Win for Data Access: Balancing Public Good with Privacy Concerns

摘要

This chapter suggests that the current urgent issues facing modernudsocieties demand the best information and knowledge from whichuddecisions can be made. This is vital for governments at all levels, nongovernmentudorganisations and researchers whose work is used by thoseudmaking decisions and policy. Such information is commonly availableudbut rarely used, linked, re-used and analysed intelligently to inform suchuddecision-making. As many problems are global, finding, sharing andudanalysing such data in robust national and international collaborationsudare essential activities. Such problems include environmentaluddegradation, climate change, global pandemics, increases in obesity andudmental ill health, overpopulation and city planning, water, security, crimeudand youth unrest.udA recent report entitled From Data to Wisdom, prepared for the PrimeudMinister’s Science, Engineering and Innovation Council (PMSEIC)udmade several recommendations to put Australia in a strong position toudboth monitor and analyse these pressing problems internally and to be atudthe international table, when appropriate, to participate in planning andudevaluating global threats.2 One major issue in population data linkage is the balance between usingudindividual health records on the total population for important publicudgood activities, while at the same time ensuring that such privateudinformation is kept confidential. The rationale for using such dataudincludes obtaining accurate and unbiased assessments of risks of diseaseudand the effects of medical care. A win:win process to allow access andudto protect privacy that has been developed and used in WesternudAustralia for over 30 years is described below.