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GoodBehavior!: Evidence That Engagement Does Make a Difference


There is tremendous intuitive appeal in the idea that people must be engaged in their health care to benefit from it. To date, however, there has been little direct evidence to support the claim that our engagement affects health outcomes.

So when a study comes along that specifically examines how people engage in a high-stakes, effective intervention and its impact on their health, it's worth a close look:

Most people diagnosed with early-stage small cell lung cancer who have surgery live about four years. Those with the same diagnosis who do not have the surgery live about one year. Yet in this study, reported in the June 16 issue of the Journal of the American Medical Association, almost one-third of those with this diagnosis decide not undergo the surgery.'  Why would anyone make that choice?

Investigators found that patients' decision not to have the operation was associated with lack of confidence in the accuracy of the diagnosis, poor communication with their doctors and fear that the operation would erode their quality of life.

And they found that African-Americans were less likely to choose surgery than whites. African-Americans and whites were equally affected by problems communicating with their doctors and lack of confidence in their diagnosis, the study found. But the presence of other illnesses and the lack of a usual source of care were exclusively associated with African-Americans deciding not to have surgery.

This study illustrates four critical points about people's engagement in their health care:

First: access is only the first step in making use of care. More than 90 percent of the people in this study had access to appropriate and effective life-extending surgery, yet other factors -- some personal and some related to their interactions with health care -- led fully one-third of them to make another choice.

Second, communication is critical. While age and other personal characteristics affected the decisions to have the surgery by some, their choice to have surgery or not was powerfully affected by the style and content of communication with their doctor, and if they had relationships with a regular provider.

Third, racial disparities matter. The opportunity to participate fully in one's care is influenced by race. African-Americans are less likely to have a familiar, trusted primary care provider who can help a distraught patient newly diagnosed lung cancer confirm her diagnosis, understand her prognosis and then weigh the trade-offs of surgery. Further, it has been confirmed elsewhere that physicians are less likely to recommend aggressive procedures to African-Americans than to whites.

And finally, individual choice may outweigh evidence. It is important to note that even some who have been counseled thoughtfully by their surgeons and primary care providers about the risks and benefits of this effective surgical intervention decide to forgo it. There are many reasons to do so: fear of surgery, discouragement and depression, religious beliefs, lack of family support'the list goes on.

This research demonstrates that our engagement in our care influences our use of the treatments available to us in ways that affect the length and quality of our lives. And it suggests that our engagement is profoundly shaped by our relationships with our providers. A relationship with a trusted and responsive clinician was a key factor leading to an average of three more years of life for these patients.

But I don't for a moment believe that our engagement and relationships with our providers matter only in high stakes decisions about treatment for serious diseases. All of us are continuously bombarded by messages from multiple sources about how to prevent and treat major and minor illnesses. Few of us will ever do sufficient research to separate the useful from the fanciful or surpass the knowledge and experience of our providers. We need the counsel of trusted medical advisers to fully understand our choices, the potential and limits of medicine, and what it requires of us to benefit from the care available to us.

Efforts to increase our engagement in our health care are an empty promise without it.


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

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Patient Engagement   Jessie Gruman   Inside Healthcare  

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