This is the sixth in a series of interviews between CFAH President and Founder Jessie Gruman and patient and consumer group leaders about their experiences with and attitudes toward comparative effectiveness research (CER).
Gruman: Tell me about yourself and your organization.
Bill Vaughan: I am a member of the National Committee to Preserve Social Security and Medicare. This organization started in the early 80's to lobby against cuts in these core programs. Increasingly, we have tried to offer ideas for cost savings and financing reforms that will educate the public that these programs are sustainable'to counter the 'Chicken Littles' who just cry that the sky is falling. We try to say that there are things we should do to improve and preserve these programs and not just say 'No, there are no problems.'
Gruman: Where do you see comparative effectiveness research (CER) fitting in the effort to improve the effectiveness of health care?
Bill Vaughan: When you look at what can be done to save Medicare with this growing aging population, what do you do? One of most important things to do is to quit paying for things that don't work or don't work very well.
Gruman: Can you give me an example of how your constituents have been affected by CER?
Bill Vaughan: Take Nexium: there is a huge price difference between it and the generics. The data show a statistically insignificant difference in effectiveness but the brand is six times the cost. It is similar in sleeping pills'some of the most advertised ones are not very effective, are more addicting, but cost more. If doctors and patients knew this, they'd be better buyers and save themselves and the program tons of money.
But the absolute key is in how you explain to people what works and what doesn't. If it isn't done right, it scares people and they think you are rationing care and imposing 'death panels.' The U.S. Preventive Services Task Force really kicked a hornet's nest during the height of the debate on the Affordable Care Act (ACA) when it suggested that fewer mammograms would be okay.
The idea that 'More and New" are better is hard to counteract, since 'More and New' have been just a key part of our American culture. At the beginning, we need to focus our messages where the science clearly shows that the differences in outcome between two treatments are the most important and most dramatic. As we build trust that this 'comparative' information is important'life-saving'it can be extended to more and more medical questions.
Remember Doctors Woloshin and Schwartz's 'fact box' idea for prescription drug labels? People tried hard to get it written into the ACA. It would be a great help to people to understand the value of comparative effectiveness information. Plus it would help us all be better shoppers.
Better medical labeling'on drugs and devices'is so long overdue and so important. You know it took 45 months to win World War II and the FDA has been working on simplifying prescription drug labeling for 33 years. That's 396 months. What's wrong with us that we can't get this done?! We still have gobbledygook on those labels.
Gruman: How do you see the increased attention to CER affecting the care your constituents will receive in the future?
Bill Vaughan: We think that CER gives us the ability to make the case for saving money on things that don't work'in terms of better care, less wasted money. CER science will help give us backbone. People can take findings to the doctor or dentist and it will improve quality of our care and save us money. And it will give the country part of an answer to saving Medicare financially.
Gruman: Some professionals believe that patients are opposed to comparative effectiveness research. Do you think this is accurate?
Bill Vaughan: No, I don't. If you say ACA provides research into what works for you, people like it. If you say the government is going to conduct research that restricts what medications it pays for, they hate it.
People are in favor of medical research and translating it into action. So the key is in how you explain what CER is doing. And we need to empower patients to be better advocates for themselves.
Increasingly, patients are turning to websites for information. We need trusted sites'like the Cochrane Collaboration'where they can go to see what the latest consensus of science is, so they can work with their doctors better.
In the meantime, though, as long as CER is not explained well, most people look at it like a cow looks at a new barn door.
Gruman: What are your fears and hopes for CER?
Bill Vaughan: We think the country needs education about comparative effectiveness research. It's scary that the 'death panels' framing during the ACA development process got the traction it did.
I'm not sure we're doing a good enough job. We talk about it in our newsletters ' we're trying to move to an electronic format ' but the average age of our members is mid-70s, and electronic formats have limited appeal. We have been reassuring people that CER is not rationing or death panels. We are desperate for ways to say this effectively.
The very words 'comparative effectiveness research' are a disaster: people don't know what we're talking about. We should call it 'What's the Best Care for You Research.' Consumer Reports (CR) did a better job with its Best Buy Drugs program, where it tries to educate people about the best drug for them, putting quality before price, and stressing the importance of talking to one's physician. But there are still a surprising number of doctors mindlessly telling patients that 'I don't think generics are any good' and this eviscerates the CR advice about finding 'the best drug for you after you talk with your doctor.'
Our members and seniors need to understand that the Medicare dollar will go farther if we support CER research. Our membership is 1/3, 1/3, 1/3'Republican/Democratic/Independent'so a lot of them have fears that 'Obamacare' is going to shorten their lives. We think it's the opposite. Our job is to educate our members and the general public that having the best science and using it (with flexibility) will extend their lives'and the life of the Medicare Trust Fund!
More CER Interviews by Jessie Gruman