An Australian researcher is calling for stronger governance of the way public sector health data is used. Dr Anni Dugdale, a sociology lecturer from the University of Canberra's School of Business & Government, says public agencies responsible for collecting public health data are under growing pressure from private sector organizations keen to commercialize the information.
At the same time, she told a recent seminar hosted by the Centre for Research in Public Sector Management at the University of Canberra, there is increasing pressures from citizens for access to information such as their own medical records.
"Public sector health information has value for public health and researchers have increasingly sought ways to create and integrate de-identified data-bases to better understand social determinants of health for example, or to plan interventions to modify patterns of health service provision," she said. "But there are other pressures: private sector information companies have sought out ways to expand the commercial reuse of health information, including information collected by public agencies."
As health information crosses and recrosses the "blurred boundary between the complex array of public and private entities collaborating in Australia's health care," Dugdale claims the information technologies underpinning e-government can sometimes outpace the adaptive capacities for systems for governance and legislation, with potentially adverse consequences for consumers and communities. As a result, she suggests a new framework is needed to conceptualize what is new about governance, public health and health information.
Dugdale says the context shaping public sector health information has changed as information as become separated from the context of its collection and become a managed and transferable resource.
This in turn creates conflict between two mutually contradictory interests - the desire for exclusivity of information and the need for access.
Governments must therefore grapple with numbers of dilemmas, such as questions about who may or must have information and for what purpose; who has the right to exclusive authority over what happens to information they have produced; and that fact that as information is widely disseminated it lowers the rewards for investing in better dissemination tools.
She says for the state, possession of information - collection, storage, processing and management - is central to highly personalized administrative decisions and the move away from a "one size fits all" approach to welfare. But at the same time questions have arisen about the rights the state has to enjoy commercial benefit from its data about citizens.
Since democratic rights entitle citizens to transparency, and citizens have a social right to make informed decisions about themselves, governments have a duty to make information accessible. However this can conflict with intellectual property rights.
And she says other forces shaping health information management which should be considered in devising new governance frameworks include:
- Privacy considerations and openness as pillars of a democratic society
- The trumping of commerce in favour of human rights of Australia's recent privacy law
- With some limited exemptions for health recognizing some equally important democratic purposes can be served by secondary data reuse
- Recent pressure for more intensive information gathering & sharing to police perceived terrorist crisis
- The trend towards expansion and reinforcement of intellectual property rights, which is strengthening perceptions about information as property
- The move away from knowledge as basis for rent-seeking, or wage-seeking to profit-seeking, for example GPs selling their de-identified patient records to pharmaceutical companies
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