Researchers: Use evidence to create an effective big data health policy

Though big data offers the potential to improve healthcare and cut costs, developing winning public policy will require making the case with real-life examples showing how data-sharing led to improvements, according to a new Health Affairs article.

"Recent policy initiatives demonstrate that the issues are complex and constantly evolving. ... Transparency from the outset with both patients and practitioners about benefits as well as risks will be central to winning the rational as well as the emotional case in favor of increased data sharing," the authors write.

The article poses four questions central to creation of effective policies:

  • What aspects of big data are most relevant for healthcare?
  • What is the policy's intention?
  • What are the barriers to achieving the policy's objectives?
  • What policy levers are available?

It points to the National Health Service in the U.K. as an example of so-far-unsuccessful government attempts to promote data-sharing despite billions spent on such efforts. It looks at three types of barriers: normative barriers, which are cultural and ethical norms; market failures; and technocratic barriers, such as interoperability.

Interoperability remains one of the Office of the National Coordinator for Health IT's top priorities, although many in the industry have expressed concern about their approach to achieving it.

NHS' latest attempt to link health records across England, known as, has run up against significant opposition from the public and providers, according to the authors. One of the problems has been with assuming the benefits of data-sharing were obvious, the say, without local, on-the-ground efforts to make that clear.

The NHS effort also didn't take into account disincentives for providers, who don't necessarily want more granular data made public that would make it easier to compare providers in terms of quality and cost-effectiveness, according to the authors.

The available policy levers include building evidence that data-sharing delivers the promised benefits; creating demand and capability through incentives for innovation and public-private partnerships for experimentation; and legislating smartly. NHS found insufficient oversight of how data that could be shared with third parties undermined the trust of patients and providers, a problem it has since addressed. New legislation might be required, the authors note.

Indeed, a recent White House report found that new privacy protections may be needed in this electronic age.

The Federal Trade Commission recently called for Congress to require data brokers to offer consumers more transparency into the data being collected and how it is used.

To learn more:
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