This is the fourth 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.
John Santa: Consumer Reports (CR) represents all consumers through three types of activities: science, journalism and advocacy. We appeal to three intersecting subsets of consumers: those interested in a scientific approach to comparisons and decision making, people who use media as a source of information, and people who are active around specific issues like hospital safety and health insurance reform.
In the fall of 2007, CR decided to focus more on health. While we had always focused on health to some extent, it had never reached the level of a dedicated team focused only on that topic. I joined CR in June of 2008 as the Director of the new Health Ratings Center.
Gruman: Where do you see comparative effectiveness research (CER) fitting into the effort to improve the effectiveness of health care?
John Santa: When CR first saw the rising national emphasis on CER three years ago, we were pleased: CER is what CR does. However, when it comes to health, we realized how difficult it is to do CER: CR would need to rely on good research done by others. Our 76-year model has relied on science and social science we do ourselves. It's one thing to do studies that compare dishwashers or cars and another to do large observational and controlled human trials that compare drugs, hospitals and doctors.
Gruman: Why do you think CER is such a volatile topic for some people?
John Santa: The context of CER in the national discussion of health care is a challenge. It speaks to the politics of the day and how health has been politicized. Comparing products and services is a functional market activity. So if you are in favor of markets and their positive effects, you have to be in favor of good CER.
But some interests have expressed significant concerns about CER and in many cases have tried to make it difficult for it to be done.
This doesn't surprise us. While industry espouses market forces, it has also opposed efforts to ensure that consumers get good comparisons of price and quality. Industry doesn't really want good comparisons. Rather it wants consumers to make decisions based on advertising and promotion.
CR was founded in the 1930's by activists who realized that our country would always use market-based approaches and that industry had an interest in undermining those approaches through advertising. CR founders took a science-based perspective by doing research internally. We don't have that choice in health. We find ourselves in a context that is much more difficult than it should be if we really believe in the importance of markets and that consumers should be treated fairly. We are excited about the work being done but disappointed that industry is making it so much more difficult than it needs to be.
Gruman: How is industry making it difficult?
John Santa: For example, industry undermines research by having financial relationships with researchers that reduces their independence. It's also a challenge to see industry create support groups that present themselves as consumer organizations when in fact they have substantial financial conflicts of interest. We believe that most consumers would recognize that those groups don't reflect their interests if they knew the role of industry. Industry tries to disguise itself behind a consumer front. Why?
Industry can play a strong role just being what it is. This is an old strategy of industry'drug companies, hospitals and even'sad to say'some doctors. Let consumers speak for themselves.
A level playing field would be much better: one where everyone is transparent, everyone plays by the rules, everyone can be trusted to represent their own stakeholder interests.
Gruman: Tell me how CR views the relationship between CER and patient-centered outcomes research (PCOR).
John Santa: PCORI has become the center of CER in the U.S.'as it should. PCORI will define the playing field now. As a result, all health groups should pay attention to the rules PCORI is formulating around CER.
We're thrilled that there is a playing field at all. The game is on. It will be interesting to see how consumers, industry and researchers play on it together. I'm impressed with how PCORI wants to involve consumers at all levels, from the start and at the top. I just hope they deal with conflicts, independence and transparency.
All involved need to recognize that this is a contact sport: the stakes are high and serious. Industry won't give anything away. While industry might admire people on the other side, they will still block, tackle and hit hard. They play to win and so should consumers.
My consumer colleagues have it right: 'Nothing about me without me."
Gruman: Can you give me an example of how your constituents have been affected by CER?
John Santa: Prior to coming to CR, I was the medical director of the Drug Effectiveness Review Project (DERP), a collaborative of organizations that commission systematic reviews to serve as the basis of public payment policies. Through that effort, a systematic review of NSAIDS brought to the attention of payers (Medicaid programs primarily) the dangers of Vioxx two years before it was pulled from the market. Multiple payers who participated in DERP chose not to 'prefer' Vioxx in their Medicaid populations and prevented deaths.
Gruman:' Some professionals believe that patients are opposed to comparative effectiveness research. Do you think this is accurate? ' What do you think is behind this view?
John Santa: I'd like to see that evidence. At CR, we've seen that lots of consumers want comparisons and will use them, although I'm sure this doesn't apply to all consumers. We're about to release a report with the Institute of Medicine involving a report out of the Business Roundtable on a survey showing that the majority of consumers do want to know all the options, including the option of no treatment or no testing, and that there is a substantial gap between those who say they want to know the options and the number who say their doctor has talked to them about options.
Some patients want the doctor to decide and will do what their doctor thinks is best. That is their choice, but by no means should this preclude the rest of us from getting whatever information we want. My sense is there are more people who want to know all the options than there are people who just want to be told what to do. CER makes that possible.
Gruman: What are your fears and hopes for CER?
John Santa: The challenge to consumers is that in the transition to being patients, they became focused on one disease or aspect of health care and their activism can get the best of them. They accept the support of a hospital or a drug company to advocate around that disease. When they do so, they operate in a biased way. They need to acknowledge that intellectual bias and their financial conflict and not assert that they represent anyone except those who have that disease and have accepted industry support.
With experience and training, patients and consumers can develop the skills to represent consumer interests more broadly and can become more effective consumer representatives with greater reach than they would have if they focus just on their own problem. Those folks should then be involved 'from the start and at the top' on behalf of consumer. Those folks will change the health care world.
More CER Interviews by Jessie Gruman