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Evidence and Trustworthy Intermediaries

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2009 was not a good year for the public's understanding of evidence.

First came the explosion of public suspicion about comparative effectiveness research as a tool for rationing rather than one that could improve the quality and cut the cost of health care, as was represented by the Obama Administration in the American Reinvestment and Recovery Act.

In November, the clumsily worded revision of the mammography guidelines released by the US Preventive Services Task Force heightened public alarm about 'evidence' as a tool of government control.

To some, 'evidence' is now synonymous with government intrusion into personal choices that are due all American citizens. Regardless of the number of people who believe this, media coverage of these two events has sometimes presented the pro- and anti-evidence arguments as a smack-down between equals.

This is not good for us.

Most of us don't realize that one of the gifts of modern health care is that there is rarely only one treatment approach for a given health problem, large or small, and that merely following our doctor's recommendation doesn't guarantee a more effective solution or a solution that matches our preferences. Assuming we recognize that we always have at least two options (to proceed with a treatment or not) and often more, on what basis do we decide among them?  Toss a coin?  Rely solely on our doctor's recommendation? Poke around online to see what information we can find?

Unearthing and understanding unbiased evidence for any one of our choices is sufficiently tricky without concern some insidious motive is skewing the findings one way or the other.

A growing number of unbiased 'tools' are available to help people make some of the more common choices about treatments. Health Dialog and Healthwise are two (of many) companies that develop proprietary (although sometimes free) Web sites and materials that carefully array risks and benefits and walk people through the decision-making process. Annette O'Connor, a leader in the development of decision-support tools, collects publicly available high-quality tools here.

But the vast majority of decisions we make about our care are larger, smaller, unique to us, or otherwise not amendable to representation in a decision guide, even if we could locate the right one at the right time.

So I was interested to learn about the work of CUE (Consumers United for Evidence-based Healthcare) and its member organizations at CUE's annual meeting of last week in Washington DC.

CUE is hosted and supported by US Cochrane Center at Johns Hopkins University, Bloomberg School of Public Health.'  Many CUE members are also part of the Cochrane Consumer Network (CCNet) an international network of consumer activists committed not only to making sure that evidence is communicated clearly and accurately to the public, but who have represented the perspectives of patients and consumers within the Cochrane Collaboration as it sets priorities for and conducts reviews.

CUE members are educational and advocacy organizations that, as part of their mission, translate, explain and communicate complex scientific information that is relevant to their constituents. They are not part of the government; they have no commercial interests. Each group works on behalf of the public and sub-groups (e.g., pregnant women, people with breast cancer, lesbian, gay, bisexual and transgender people) to ensure that their members and readers can understand the research findings for which their tax payer dollars have paid.

The suspicion and lack of trust of government, of corporations and of health institutions is rising. Independent groups like the members of CUE play an increasingly important role as trustworthy intermediaries that can help us distinguish what is relevant and useful evidence that we can use.

And we need all the help they can offer.

More Blog Posts by Jessie Gruman

author bio

Jessie C. Gruman, PhD, was founder and president of the Center for Advancing Health from 1992 until her death in July 2014. Her experiences as a patient — having been diagnosed with five life-threatening illnesses — informed her perspective as an author, advocate and lead contributor to the Prepared Patient Blog. Her book, AfterShock, helps patients and caregivers navigate their way through the health care system following a serious or life-threatening diagnosis. The free app, AfterShock: Facing a Serious Diagnosis, offers a pocket guide based on the book. | More about Jessie Gruman


Tags for this article:
Evidence-Based Medicine   Jessie Gruman   Make Good Treatment Decisions   Inside Healthcare  


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