The Commodification and Co-optation of Patient Narratives

Yesterday in the NYT there was an article written by Pauline Chen, MD entitled “When Patients Share Their Stories, Health May Improve.” Dr. Chen described results of RWJ Health Disparities Program and AHRQ-funded research showing that hypertensive patients who were given patient narratives to watch on DVDs had improvements in their blood pressure readings. Dr. Chen writes, “Despite the ubiquitousness of storytelling in medicine, research on its effects in the clinical setting has remained relatively thin.” She goes on to say, “In health care, storytelling may have its greatest impact on patients who distrust the medical system or who have difficulty understanding or acting on health information because they may find personal narratives easier to digest.” In other words (my words), we can use other patient’s stories to convince angry or ignorant patients to comply with our medical advice—in this case, to convince African-American hypertensive adults in Alabama, to take their anti-hypertensive medications, and follow diet and exercise advice. Dr. Chen concludes, “…the possibilities for integrating storytelling into clinical practice are numerous. In one possible situation, which is not all that dissimilar from popular dating sites, doctors and patients would be able to access the Web sites that would match patients to videos of similar patients recounting their own experiences with the same disease.” Her article includes a stock photo of two smiling older men seemingly conversing on a park bench. One man is white and one is black. Their race shouldn’t matter, except it does. You wouldn’t know that unless you read the original research article she is referencing. I braved the barrage of prescription drug ads to access this original research article online from the Annals of Internal Medicine. (Note to AstraZeneca: Vimovo is a really bad name for a medication that has nothing to do with either increased energy or intestinal parasites).

Located in a Birmingham Alabama safety net hospital, “Culturally Appropriate Storytelling to Improve Blood Pressure: A Randomized Trial” by Thomas K. Houston and his colleagues randomly assigned 229 African American hypertensive patients to receive either a general health education DVD (for home use) or a specially developed DVD with African American hypertensive patient stories. This special narrative communication DVD was developed for this research project, and was drawn from stories of other patients in the community who were ‘like’ the study group. And since this project was addressing a health disparity issue of increased hypertension and bad outcomes from hypertension in African Americans, that meant they were all African American. I watched some of these videotaped patient narratives, and they were filmed with the person in a clinic exam room with a portable blood pressure machine next to them. They all deal with compliance to medications and diet and exercise recommendations, and on how to talk to doctors. One woman concludes her script with “Thank God for our doctors.” Although 27% of the study population dropped out in the first month or so of the study, and of the remaining study group 71% were women with a mean age of 54 years (older women are known to be more compliant with medication), there was a modest reduction in blood pressure readings among the group who said they viewed the patient stories DVD. Having worked as the Hypertension Control Nurse for the Richmond City Health Department in Virginia for three years, I could imagine who the study ‘drop outs’ were (men). Information on them is buried in the Appendices of the Annals and I could not access it.

The researchers explain their rationale for the apparent positive effect of viewing patient narratives on patient outcomes with this statement: “A parasocial interaction, created by the homophily between the patient and storyteller, may have rendered the viewers more susceptible to behavior change messages and suggested new ways of interacting with family and health care providers.” Did I mention that most of the authors of this paper are physicians?

Of note is a similar Time magazine article on the same study. It includes a much more appropriate photo, one of an African American nurse taking the blood pressure of an African American older man in his home. It is accompanied by advertisements for antihypertensive medications and for diet foods.

This is all part of a much larger issue, or a set of related issues. Where are the narratives of resistance relegated in this? As in, where are the stories of those angry patients, or those patients who have their own good reasons for not complying with prescribed medications or other medical advice? Where are the stories of the people who want to be patients but they can’t get access anywhere to even be a patient? I really wanted to see the Annals of Internal Medicine post videotapes of the pissed off patients who were unscripted or who were screened out of the research study entirely. But the medical establishment doesn’t want to hear those stories because they don’t sell.

Note on the posted photo. That is me with the people from the Richmond Urban League. I am shaking Governor Chuck Rob’s hand on the day he declared a Hypertension awareness month in Virginia.