In the healthcare arena, one of the promising areas of innovation is genomics--and how that can be adapted to providing personalized medicine. But while progress is being made in understanding the human genome and how to tailor treatments based on individual's genetic structures, a barrier remains: how to successfully weave together disparate sources of information.
Darrell West, founding director of the Center for Technology Innovation at the Brookings Institution in Washington, brought this issue to the forefront Jan. 28 in a paper and symposium at Brookings. He argues that now is the time to move forward to connect genomic and other personalized information to EHRs.
This will require, though, a "seamless and rapid flow of digital information, including genomic, clinical outcome, and claims data, in order to become more efficient, effective, and truly personalized," he says in his paper, "Enabling Personalized Medicine through Health Information Technology." However, he emphasizes, this will take multiple steps.
For instance, there is a need to integrate data on genetics and drug effectiveness into patient's electronic records. "This will give physicians the most up-to-date information and help them target drug treatments on those most likely to benefit," he said at the symposium.
Next, a need exists for better data-sharing networks that would give physicians and scientists a way to connect different information systems. "Currently we have discrete data systems in various parts of medicine, but they are not well integrated," he said. "It's hard to determine what works and how to assess costs and benefits."
And then, there's the issue of privacy rules. West acknowledges the fear that many patients have--that they may be discriminated against if their data is not kept confidential. However, he said, "We need to strike the right balance...between privacy and innovation."
While HIPAA rules provide an important safeguard, they also may be impeding health research. Now may be the time, he suggests, to revise privacy rules to distinguish health research from medical practice and "allow for linking data for multiple sources for research purposes in ways that protect privacy and confidentiality."
Overall, West proposes quite a plateful of changes for personalized medicine in terms of using the data and using EHRs.
So can this be done soon? It depends--if policymakers are listening and the medical community is willing to step back and see what needs to be done. - Jan