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Keywords: Participatory medicine, African Americans, health care disparities, non-small cell lung cancer.
Citation: Gruman J. Evidence that engagement does make a difference. J Participat Med. 2010 Dec 22; 2:e19.
Published: December 22, 2010.
Competing Interests: The author has declared that no competing interests exist.

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 non-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,[1] almost one third of those with this diagnosis decide not undergo the surgery. Why would anyone make that choice?

Investigators found that patients’ decisions not to have the operation were 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.

They also found that African Americans were less likely to choose surgery than whites. African Americans and whites were equally affected by problems in 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 regular health care provider 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% 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 providers — led fully one third of them to make another choice.

Second, communication is critical. While age and other personal characteristics affected some people’s decisions of whether or not to have the surgery, their choices were powerfully affected by the style and content of communication with their doctor, and by the presence or absence of a relationship 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 with newly diagnosed lung cancer confirm her diagnosis, understand her prognosis and then weigh the trade-offs of surgery. Further, it has been confirmed elsewhere[2] that physicians are less likely to recommend aggressive procedures to African Americans than to whites.

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 laypeople 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 to surpass the knowledge and experience of our providers. We need the counsel of trusted medical advisors 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.


  1. [1]Cykert S, Dilworth-Anderson P, Monroe MH, et al. Factors associated with decisions to undergo surgery among patients with newly diagnosed early-stage lung cancer. JAMA. 2010;303(23):2368-2376. Available at: Accessed December 15, 2010.
  2. [2]Shavers VL, Brown ML. Racial and ethnic disparities in the receipt of cancer treatment. J Natl Cancer Inst. 2002 Mar 6;94(5):334-57. Available at: Accessed December 15, 2010.

Copyright: © 2010 Jessie Gruman. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author(s), with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.