Open health programs create a range of ethical concerns. Some of these are old, and some are new; some need action now, and some need a longer view.
Responding to these concerns requires the use of a limited pool of human and physical resources. So we need to start by determining the most important of these problems.
Privacy, intellectual property and liability are the usual suspect issues for open data policies everywhere. These concerns are important, but they are not novel. That doesn’t mean that they should be overlooked, rather it suggests these problems are within our capability to handle as open health evolves.
Of course, open health should be designed to prevent the mishandling of personal information, but we foresee this discussion as piggybacking on the larger open data movement instead of being a concern for open health in particular. And at any rate, privacy — for good reasons — already receives more attention than other concerns, and it’s already discussed within the context of open data.
Doing more with less
In the United Kingdom, open health is required to pay for itself, doing more work with less funding. While efficiency is obviously important, we should take care that the efficiency measures required by open health don’t create greater costs down the road.
Such costs include future financial burdens from unmaintained policies, or perversely created health incentives that draw providers away from their primary roles. Preventing this will require oversight, which itself will need independent funding and design. We think this presents a significant challenge for open health systems.
Freely available data is not itself without cost. These data sets represent significant investments and there’s a need to maintain data quality. Quality control ensures the data are usable and genuinely serve to promote health. Data sets also require good data collection, which will invariably require practitioner involvement.
We think that a central concern for open health should be navigating the balance between the costs of dataset generation, maintenance and release, and the time practitioners are required to expend in generating usable data. In the United Kingdom, moving to electronic health records has cost in excess of £2.7 billion, but it hasn’t been able to show what it has achieved yet.
As we suggested earlier, there’s tension between the aim of open health to incentivise innovation in private enterprise, and supporting best practice in health care. We need to ensure that we don’t let the search for more-bang-for-less-buck undercut our ability to promote health. That is not only a bad way to run the health industry, but may also lead to further costs down the road.
Most important, most challenging
Unequal access to information technologies could result in the poorest and least technologically savvy suffering from poorer quality of life. Open health requires access to technology, technological literacy and access to service providers – people who lack any of these are likely to fall through the cracks.
What’s more, the digital divide impairs the ability of some individuals to participate in the governance of open health. Direct engagement is incredibly beneficial, and can certainly support patients, health-care users and professionals. But if funding and service provision are decided by the most vociferous, then open health feedback can skew service provision to those who are the most organised and skilled complainers. Those already marginalised may be left out and suffer even greater inequality as a result.
Unequal access extends beyond personal use. Offline users' personal information may help develop policies or private enterprises that the offline user has contributed to (via their data) but cannot benefit from. This includes the power of any linked data sets, and any consultation mechanism about or emerging from open health, which, again, is likely to occur online. Open health may democratise health, but also make it more difficult for individuals to use their democratic power by denying those without the means access to participation.
Open health will use information and user feedback as a way of directing funding. Data is “crucial to public accountability”, so if it’s inaccurate or used badly, open health may result in limiting access to service providers. This will likely impact the most vulnerable more than other groups.
We think this is a serious challenge and one that cannot be met by merely assigning responsibility to the individual user – particularly to those physically unable or not technically competent to engage. Those isolated or unconnected could also be the most harmed or left behind by new policies. This is even more problematic when we consider that individuals with poor health are often more vulnerable to losses in basic services we take for granted.
Democracies need to account for all voices, even those without internet access. The need to design policy around mitigating this inequality requires early intervention; like many aspects of public health, prevention is better than cure.
We think countering this challenge is most pressing and most challenging for open health because it shifts the burden of promoting good outcomes to shoring up existing educational, infrastructural, and welfare considerations. This broadening of the scope of open health is consistent with its far-reaching aims but provides an extra layer of challenge to an already challenging policy innovation.
This is the third part of Open Health, an intermittent series on the role of open health in shaping the future of Australian health care. Previous articles from the series are linked below.
Part Two – Open health, privacy and the digital divide