Jessie Gruman’s Journal of Participatory Medicine commentary, “Evidence That Engagement Does Make a Difference,” reminded me of a talk delivered by Alice Tolbert Coombs, M.D.,  last September:

As you listen to Dr. Coombs’s chilling story about a man who lost his foot because nobody ever took his sock off to examine it, please review Jessie’s summary of the JAMA study, “Factors Associated With Decisions to Undergo Surgery Among Patients With Newly Diagnosed Early-Stage Lung Cancer“:

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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 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.

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Online engagement is the focus of my research, so a letter to the BMJ from Paul Wicks of PatientsLikeMe also comes to mind: “Sharing access might increase engagement.” An excerpt:

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All our data are patient reported, and this has advantages and disadvantages. In its favour, creating patient reported outcomes and disease specific tools demonstrates value to patients in their first contact with the system. There is no need to interface with a multitude of IT systems, negotiate variable policies and permissions, or adhere to US regulations for protecting health specific data. Disadvantages include uncertainty over quality of diagnosis, uneven levels of participation, and less ability to capture objective values (for example, service use).

Patients may expect greater levels of connectivity as a result of social sharing tools, such as Facebook; users of PatientsLikeMe identify several benefits of sharing their health data with others.

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Skeptics may well ask, Who is ready for this? The sickest people, the ones most at risk for being left out of the clinical conversation, are the least likely to have access to the internet. Pew Internet research shows that is the case — for now — but the spread of broadband and mobile internet access is changing people’s attitudes toward information.  As I wrote recently:

The always-on, always-with-you internet enhances people’s online experience and creates a positive feedback loop, reinforcing their interest in using the internet to gather and share information. Two waves are crashing together – an increase in technology and an increase in chronic disease – and both are driving us forward toward engagement in online health resources.

I’m working this holiday week (shh, don’t tell anyone) on a couple of new reports which show that yes, there is a segment of the population using the internet to track their weight, diet, exercise, and other health indicators or symptoms online. And yes, another segment goes online to find other who might have health concerns similar to theirs. They are small groups, but they exist.

To bring it back to the beginning, I’ll just ask: What’s it going to take to get the sock off? A thorough clinician? An insistent loved one? Or a realization inspired by something someone sees online?


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