Thinking about patients at the beginning of the process rather than at the end focuses the discussion on outcomes, said Sharon Terry, president and chief executive officer of Genetic Alliance. Patients should not be considered just the end users of genetic tests.

From the patient perspective, health care providers do not always have a clear sense of what is most useful to patients. Providers may overtreat, undertreat, inappropriately treat, or not treat at all, based on the available information. What insurance will cover is often unclear, which can lead to disagreements over what should and should not be prescribed or performed. Patients also may make demands, some of which are appropriate and others of which may be inappropriate. “None of these are clear-cut,” Terry said.

A fundamental problem, Terry said, is that the incentives to understand disease are low. Medicine is focused on trying treatment after treatment, but what is not captured during that process are data that could be used to determine what is effective and what is not effective. The key problem is finding an incentive to have a greater understanding of the biology of the disease, Terry said. What group will enforce assessments of value based on outcomes? In other industries, the consumer is empowered to do this, Terry noted, but in medicine, “all the stakeholders, including patients, make decisions that are disconnected from the consequences.” Developing companion diagnostics may even be an interim solution toward what is actually needed for understanding disease. There may be no need for a companion diagnostic after acquiring this information, she said.

Learning Health Care System as a Potential Solution

To address the difficulty of thinking on a systems level about patient care, the nation needs a learning health care system, Terry said. This will enable people to “understand the disease, the progression of the disease, the treatment, and the reaction to the treatment, adverse or not.” In short, she said, a learning health care system “will help us to understand the outcomes that we seek.” Similarly, transparency in the performance of tests, the data generated by those tests, and the consequences of those tests can lead to best practices that can be shared within the system, which can save time and money. This new way of thinking about the health care system involves all stakeholders and provides an opportunity to create new metrics and new value chains tied to outcomes. People have to be willing to risk what those who are sick risk every day, which is changing the model, finding a new solution, and possibly destroying a current business model, she said. That will be difficult in medicine, particularly given the lack of empowerment among the people who receive care.

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