Public Needs Voice in Health Care Decisions

As the presidential election heats up and the Supreme Court prepares to hear arguments on the 2010 health care overhaul, it’s clear that the issue will remain a major national priority this year.

Comparative effectiveness research, the idea of doing research to find out what works for whom in health care, has been a prominent, and at times contentious, issue in health care reform.

Prominent because CER can serve a very important purpose in advancing high-quality care. Contentious because some propose that CER be used by the government to decide what medical care should and shouldn’t be available to patients.

The institute created by the law is now up and running. The Patient-Centered Outcomes Research Institute holds great potential in advancing comparative effectiveness research that supports doctors and patients and improves the quality of care.

One of the reasons that so many organizations representing patients, providers and people with disabilities supported creation of the PCORI was the opportunity that it offers for us to have a meaningful voice in decision-making.

The PCORI recently began the process of making a crucial early policy decision — that of setting national priorities for comparative effectiveness research.

Unfortunately, the PCORI’s process does not give patients and people with disabilities a real opportunity for meaningful input in this decision. That’s because the only priorities that it is seeking comment on are broad categories of health care that restate the institute’s research mandate from statute.

While these categories are important, they don’t get down to the real questions that matter to patients and caregivers, such as how do the risk-benefit trade-offs compare for different cancer treatments? Or which care management approach does the best job ensuring patients with high blood pressure receive optimal care and get their blood pressure under control? The real decisions like these will be made behind closed doors.

As a patient who has suffered from epilepsy for more than 50 years, I know how important these decisions are. And, as I told the PCORI board in January, these decisions are too important to be left to a small panel of experts in a nonpublic process.

I agree with the Institute of Medicine, which said in a 2009 report, “Public (including consumers, patients, and caregivers) participation in the priority-setting process is imperative to provide transparency in the process and input to delineating research questions.”

The fact is that we need better information to guide better health care in America. And the PCORI can help get us there. But we need to know we have a voice in the decisions that the PCORI will make, and that our voice matters. The PCORI must not punt on transparency.

I’m encouraged by recent statements that the PCORI will soon establish a clear, transparent process for making its research decisions and that this process will focus on meeting patient and physician needs.

As the PCORI moves forward, I urge its members to define and adopt procedures that achieve this. Their work is too important for it to move forward without this in place.

Former Rep. Tony Coelho (D-Calif.) is chairman of the Partnership to Improve Patient Care. This post first appeared on Roll Call.

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