Open health: what is it and why should you care?

Open health is one side of “open data” policies being pursued by countries all over the world. Kate Ter Haar

“Open health” captures a broad set of information technologies that will change the way we approach health and health care. It encompasses “ehealth” (the storage and provision of personal medical information online) but also includes the release of health information to the public at large. It’s the health side of “open data” policies being pursued by countries all over the world.

The capacity for anyone to access large amounts of health information is likely to have far-reaching effects. We’re researching open health in the United Kingdom, which has one of the most aggressive open data policies in the world, because as Australia enters the world of open health, it’s important to engage with the experiences of other countries in an open and democratic fashion, and apply them to our own situation.

Why it’s important

Open health is not just about you having more access to your health data, but making it available and accessible to others — eventually on an unidentifiable but individual scale — as opposed to aggregate data. In the near future, there’s a good chance that yours and everyone else’s personal health information will be available for download by anyone (with identifiers removed).

You should also know that this information isn’t just going to be shared outwards from government. Open data projects aim to increase information sharing across government departments; health data will be linked with education data, law enforcement data, and spending data.

A number of driving factors inform open health policy, and these drivers don’t always agree. The four key drivers of the UK government’s program, for example, are to:

  • increase public choice;
  • hold government to account;
  • enable private or business innovation; and
  • enable public servants to do their jobs better.

We all know that businesses, governments, and private individuals don’t always see eye to eye. Navigating good policy requires us to understand where our interests align with the interests of others, and where they conflict.

Why you should care

With the launch of ehealth and the National Broadband Network, the integration of information and health infrastructures is already under way here. We’re now trying to ensure Australia’s approach to open health is as good as it can be.

Open health programs need to account not just for issues about handling medical information, such as privacy and informed consent. They also need to address issues of distribution, such as ownership, security or liability and equity. Should companies that develop drugs using open health data be able to claim ownership over their innovations, for instance? And to what extent should the details of this new innovation be released to the public?

Open health will impact health-care research and practice. Manipulating electronic information and providing good health care are not the same thing. Nor is it a given that interpretation of this data will be a skill available to just anyone, or that the best users of information will be among those who are qualified to provide better health care.

Professionals researching issues of health care and health-care practitioners may soon have their lives changed by open health. We owe it to ourselves and to them to ensure that it makes health care easier and more successful, and not create new burdens.

We aren’t suggesting that open health isn’t a good idea. We think it could play a vital role in shaping the future of Australian health care. The important question is just what this role will — and should — be. Over the next two months, we’ll be exploring this issue with an intermittent series on this website.

This is the first part of Open Health. Other articles in the series are linked below.

Part Two – Open health, privacy and the digital divide