We should not build walls around the research

[Guest guest]

Another important conversation among experts . that won't be read by the

American public http://bit.ly/agMklW

THE BROOKINGS INSTITUTION

IMPLEMENTING COMPARATIVE EFFECTIVENESS RESEARCH:

PRIORITIES, METHODS, AND IMPACT

" patients must be at the center of the questions

about medical care that we want answered "

SENATOR BAUCUS: Thank you, Mark, very much, and thank you very much for

inviting me to your session today to talk about an issue I think of great

transformative effect, and that is comparative effectiveness research.

Nelms once said, " If men liked shopping, they'd call it research. "

Think about it. From cars to television, when Americans go shopping, they're

readily able to find and evaluate information about the quality and

effectiveness of almost anything, but not so for health care.

Why shouldn't Americans have information on what works and what doesn't when

it comes to their health? That question is especially important when one

considers that health care for Americans spend one in every six dollars that

we spend in a year.

Since the Finance Committee began to pray in for a comprehensive health

reform last year, comparative effectiveness research has been mentioned very

often. It's almost constantly mentioned, and it has raised almost as much

controversy. It's a hot topic, so much so that senators on my committee on

both sides of the aisles suggested that we stop using the name, stop calling

it " comparative effectiveness research. " They suggested that we switch to

something else that is a little less controversial in its branding.

So we talked about this one day and I, just off the top of my head, said

let's call it FRED. That might be more palatable and less ominous. Another

name we could use is Patient Centered Outcomes Research, we could call it

P-COR. At least it would reflect the intent of the research, or we could

just call it " shopping. " Whatever we call it, one thing is certain: We need

to address the very real concerns that this research might help, but very

real concerns that this research might be used to, quote, " ration health

care. "

People talk about cost-effectiveness versus clinical effectiveness. People

talk about whether the research can be used to make coverage decisions.

These concerns boil down to one underlined issue: rationing.

This is serious and needs to be addressed with integrity. There are several

ways: The first is to make sure that the research is patient-focused. The

research must consider patient preferences for how they want treatments to

work. Patients must be actively involved in studying the research priorities

and in designing the research study. The research findings need to be

relevant for patients.

We should assist patients so that they can participate in the process for

developing priorities and designing studies. Patients' representatives

should be given training on technical matters so they can interact with

researchers and other stakeholders on these matters. In short, patients must

be at the center of the questions about medical care that we want answered.

Next, practicing physicians need to be at the table, not just researching

physicians but those who use and prescribe medical care. They know what

questions to ask, and they are key to making the research meaningful for the

decisions that we make with patients.

Third, we need safeguards: safeguards, when it comes to the use of research

in federal health care programs. Medicare and Medicaid should not be allowed

to create automatic links to any single study. These programs need to be

open, transparent, and thorough in how they use patient standard research.

Nothing should be done behind closed doors without public input.

We should not build walls around the research.

..

Many patient groups see the value, indeed the need, for more of this type of

research. Let's take prostate cancer. Men with prostate cancer have a choice

among three common treatments: surgery, radiation, and chemotherapy. Each

approach yields different outcomes in terms of survival and quality of life.

Some areas of the country tend to use one approach; some use other

approaches, and some of these are more costly and less effective than the

others. Comparative effectiveness research would compare the clinical

outcomes of each approach in a systematic way.