Open health, privacy and the digital divide

Open health refers to a set of developing information technologies that make it easier for patients, professionals and administrators to access health-care information or make it anonymous and open to the public. This is done by integrating existing health-care records and data. It is hoped the result will be more health information for more people to access more easily. Open health requires online access. It’s easy to think of this as a background issue because the national broadband network is due to roll out in Australia over the next few years. But the so-called digital divide is a real concern in Australia and around the world.  What’s more, the world isn’t just divided between those who have internet access and those who don’t. We also need to consider the staggering differences between the quality of access, individual internet literacy, and how these variables can be leveraged to create good outcomes... Perhaps the most obvious concern for open data policy is the privacy of individuals. If there’s enough identifiable information in a data set that has become public, then individuals can be picked out and potentially targeted by private businesses,government agencies, and even by police in ways they might not want.  Even if the intentions of the viewer are good, we still have the right to expect that our personal information remains anonymous and our privacy is protected... We should also be concerned about who can exploit the data, and how much control we have over access. Some of us may not want even our anonymised data being used in ways we don’t agree with.  Open health should make opting out simple... Finally, to whom do we turn if something goes wrong? With a move towards more automated and rapid release of data, there’s more urgency around what options individual citizens and groups have to question, comment, or contest the release and use of open data...  Primary health-care givers treat illness, they don’t work on open data strategies. Indeed, they may not even have time to use open data effectively. New policies bring new responsibilities around reporting and this could burden already over-worked doctors... We also need to ensure that health-care providers aren’t prevented from doing their job as a result of new policies. Open health data can help us all, but only if they are properly supported...  Open health policy works with the assumption that getting benefits out of open health is the individual’s responsibility – a trend a recent UK publication referred to as 'responsibilisation.' We think this is a problem – if open health is really about improving our lives, it shouldn’t just shifting the burden downstream.  Done badly, open health could reduce responsibility for a community’s health solely to the individual. Being responsible for our health doesn’t mean the public health system shouldn’t help..."