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Abstract
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.
References
- [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: http://jama.ama-assn.org/content/303/23/2368.abstract?maxtoshow=&hits=10&RESULTFORMAT=&fulltext=early+stage+lung+cancer&searchid=1&FIRSTINDEX=0&resourcetype=HWCIT. Accessed December 15, 2010.↩
- [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: http://jnci.oxfordjournals.org/content/94/5/334.full.pdf. 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.
Great post and thanks for attending us to the research.
In turn, I’d like to attend you to the work of Prof. Dr. J.M. Bensing in the Netherlands, on communication between patients and their care providers.
Here’s a description of her profile http://www.onderzoekinformatie.nl/en/oi/nod/onderzoeker/PRS1237836/
Let’s keep on the track of these types of research!
Rob Halkes
Twitter/rohal
Actually research in the area of patient engagement has been going on for at least 30 years…it just was not called patient engagement. Research in the field of physician-patient communication…a requisite mediator of engagement…has consistently demonstrated a strong, positive correlation between the quality of the doctor-patient dialog and such measures as clinical outcomes, patient and provider adherence, reduced utilization and increased patient/provider satisfaction.
I address this very topic in a recent blog post entitled Health Behavior vs. Doctor-Patient Communications – Are We Focused On Modifying The Wrong Thing? at http://www.healthecommunications.wordpress.com.
Why don’t patients with NSCLC (stands for: Non-small-cell lung carcinoma [editor]) opt out of surgery as a treatment option? Having been there with my wife who survived NSCLC (Stage 4 – Re-staged to Stage 2 after Chemo) I can offer several reasons based upon real life experience: 1) Most Thoracic Surgeons in local community hospitals where lung cancers (and other cancers) are first diagnosed “dabble” in lung resections for cancer. Their primary focus (profit center) is on heart disease. If the consult my wife had in the SF Bay Area is representative, the surgeon’s familiarity with current treatment/outcomes research is dated…as are their ensuing recommendations. As such they instill little comfort or confidence in patients that aren’t willing to die without a fight. 2) Too few survivors willing to share their success stories (case for social media). Conventional wisdom is that lung cancer is a death sentence so why undergo major surgery only to die anyway. 3) There are better treatment options (as we discovered) such as Radiation Therapy and Proton Therapy. Again…poor physician-patient communications plays a huge role.
It should also be noted that not everyone is equally predisposed to “care” about their health, e.g., people with an external locus of control. I have met and counseled many lung cancer patients who believed that
it was their time to die…and nothing they could do would change the outcomes. The same notion applies to people with diabetes, heart disease and so on.
Patient engagement initiatives, like advertising, have to be relevant to the patient if it is to work. By relevant I mean it has to be congruent with the patient’s beliefs, attitudes, previous experience and social context. Telling a person who lives in s “bad neighborhood” to go out and walk everyday is not relevant. Providers projecting attitudes toward patients based upon their weight, gender or race is incredibly obvious and off putting to the patient.
I guess my point is that what the research has shown is that for engagement/communications to be effective, it has to be tailored to each individual patient to maximize relevance, cognitive engagement and eventual behavior change.
Steve Wilkins, MPH
I have worked with Bill Miller in the Motivational Interviewing field for several years, and it is just common sense that good customer service and being just plain old nice goes a long, long way. His research showed that empathy was the most powerful predictor of client outcomes and retention. I read an article somewhere where a young medical resident decided to try listening to his patients, and see if it made a difference and his actual time with them in the office turned out to be less time, more cooperation with the client and good follow-up. Steve Rollnick’s work in Healthcare has been equally fantastic, with a growing knowledge that our patients give us “change talk”, little gems of a desire, ability, reason or need to change a behavior. I had a woman I was coaching once tell me, “I thought all my clients were whining and they were really giving me Change Talk!” Being strategic with it is essential yet without evocation, collaboration, autonomy and empathy, the sessions don’t have the same results.
I once saw a therapist ONE time and walked out of there, problem solved. What had she done? She listened to my story (whining) and then she talked about my strengths, my past successes when I thought I could not make it and did in spite of myself, and I thought “Dang! She is right” and made the behavior change that night. One session.
The Motivational Interviewing website is http://www.motivationalinterview.org
Many thanks.
Jacque Elder, Psy.D., CADC