Patients and Doctors Talk to Each Other (What a Concept!)
If you cut through the academic-speak of this title, Captured voices in cancer: experiences from networking between individuals with experiential and professional knowledge, that's what it means: Cancer patients and doctors are talking with each other.
Of course, they are in Sweden, but let's see if we can get some oncologists over here to pay attention.
The most interesting thing about this piece of research is that it studied a "network" of patients and doctors that was already in place, and had been for five years or more at the time of the study. These cancer patients and health-care providers met regularly to discuss cancer care and learn from each other.
So, question: I've never heard of such a group here in the U.S. Has anyone? Please let me know if you've been a part of this kind of group or have heard of one.
The Seattle Cancer Care Alliance solicited feedback from a group of patients when it was designing its new women's center within the cancer center, but that was on the design of the physical space, which SCCA was calling "spa-like" until I discouraged the use of that description on the Web pages (which I wrote, by the way). Can you imagine? The image I had was of a woman going in for a mammogram and then getting her nails done. Ugh.
But back to the Swedish research.
From the abtract:
Patients' needs and experiences attract increasing attention within health care. In order to generate knowledge about the voices that emerge from collaborative experiences between members of patient associations for cancer patients (PACP) and health care professionals (HCPs), we studied a permanent network aimed at improving cancer care through increased attention to the cancer patients' view and experiences.
Wow.
The research looked at different voices that emerged in these conversations, the "hesitant voice," the "enlightened voice," the "liberated voice," and the "representative voice."
The researchers concluded that networking between cancer patients and health-care professionals "may help the participants manage uncertainty, strengthen the patient's perspective, and provide new views on common issues." They also said something interesting about the possibility of the patient representatives "learning too much" from the health-care providers and possibly losing their voice as representatives of the patient's point of view.
Read the study:
@ Jeanne Sather 2007.
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