note: These are speaking notes from a talk I gave at the 2018 Watson Conference
I’m Bill Hart-Davidson, professor in Writing, Rhetoric, & American Cultures and Associate Dean for Research & Graduate Education in the College of Arts & Letters at Michigan State University. I am a user experience and writing studies researcher. I look at the ways people use writing and writing tools to do things in the world — mostly in workplaces — and then I try to help improve them. You could say that I try to create effective interventions in writing behavior that produce beneficial outcomes in other areas of people’s lives. Recently, this includes work in the world of health and medicine.
A recent study in the Journal of the American Medical Association estimates that 35% of adults in the United States and half of adults over age 50 suffer from metabolic syndrome, a medical condition associated with a number of life-threatening problems including diabetes, heart disease, high blood pressure, and stroke (Aguilar, 2015). Metabolic syndrome, as the name implies, is not a simple disorder. It is a systemic problem, comprising complications, malfunctions, and breakdowns in the network of signaling processes that regulate metabolic functions. Like other forms of chronic illness, metabolic syndrome can be accurately described at various levels of scope, from the molecular-cellular level and at a more holistic body systems level. Each of these descriptions, while accurate, can still be partial as the work of Anne Marie Mol has demonstrated (2003). They adopt a perspective that affords a way to understand the problem, often a symptom or disease in its own right, such as high blood pressure or diabetes. Perspectival descriptions are useful when they reveal concrete paths to intervention and treatment. Integrative models that purposefully adopt a holistic view such as ‘metabolic syndrome’ can show how problems previously treated as isolated may be treated as part of a larger process or system.
Recently, I’ve been working with some colleagues to propose and evaluate a holistic model at a new level of scope for the treatment of chronic illnesses associated with metabolic disorder. The model proposes the strategic, clinical use of written genres to treat the signaling defects associated with metabolic disequilibrium and the negative outcomes associated with it including increased risk of cardio-vascular disease, high-blood pressure, and elevated blood glucose. The “body” treated in this model is not limited to the physical boundaries of the patient, but is rather that of the health services network, an expanded set of sensing and signaling agents implemented as a means to treat the patient body.
The model I’m talking about here today is based on a baseline understanding of chronic illness as a problem of signaling defects. At the cellular level, most chronic illnesses including heart disease, diabetes, autoimmune disorders, and cancers have pathological roots in signaling defects. Treatment interventions for signaling defects take a number of forms depending on where the problem lies. We might try to block an errant signal or we might try to boost a signal that is not being reliably received. We may add sensors to detect signals, or regulate the pattern of sending and receiving to simulate a homeostatic function in the body. These are intervention mechanisms. The means are widely varied, usually involving a combination of lab tests, medications, medical devices, and behavioral modifications. The goal, though, is to restore the normal signaling routines to bring biochemical processes back to something approaching normal. We are fixing bad communication. My colleagues and I are saying it’s time we understood chronic illness as a writing problem.
This view is not as exotic as it may initially seem. As I noted, we already treat chronic illness not just with drugs, but also with a schedule of testing meant to detect the biomarkers which indicate that therapeutic levels of drugs are present in the patients’ systems. Lab technicians and health providers read the results, communicate with the patient and with others in the network such as pharmacists, to ensure that dosages are adequate, etc. Ideally, through the monitoring the tests help to achieve and the coordinated actions that flow from the results of testing, metabolic equilibrium is achieved in the patient. The treatment is not just the drugs. To treat a problem with the patients’ internal network of metabolic sensors, we expand the patient “body” to include multiple outside agents, supplementing both the sending and receiving of feedback to achieve the desired results.
But…that expanded body can be sick too. Exhibiting the same kinds of signaling defects as the patient body.
Let me tell you a bit about my colleagues and how we are coming to understand the implications of this idea of signaling defects in the health network as a way to both understand and treat chronic illness. We think it can be transformative because it helps to explain the persistence of medical disparities in populations of patients who are underserved by health care organizations for socio-economic reasons. In particular, it helps us to get beyond a deficit approach that suggests patients who rely on Federally Qualified Health Centers for care experience poorer outcomes despite similar diagnoses and treatment options than patients who have better health insurance coverage and/or come from wealthier backgrounds.
For the last five or six years, I’ve been part of a research group affiliated with the Center for Ethics in the Life Sciences and Humanities focused on reducing disparities in health outcomes for at-risk patients managing chronic illness, especially heart disease and diabetes. Our work seeks to improve clinical practice, patient and provider communication by fostering evidence-based care, shared decision-making, and effective patient self-management. My colleagues on the team are all scientists — Dr. Ade Olomu is an internal medicine specialist and physician, Dr. Karen Kelly-Blake is a Medical Anthropologist, and Dr. Margaret Holmes-Rovner, who recently retired, is a Sociologist whose career contributions have been in the area of medical decision-making. The expertise I bring to the team lies in how people communicate, especially in writing. This is relevant to chronic illness because caring for someone with a chronic condition is very much a communication problem.
A good integrative model for treatment will identify multiple possible intervention sites and methods. These are areas where the nature of the problem opens up opportunities for some external mechanism to alter the errant pattern.
The projects I work on focus on three such sites, each of which are key moments for communication-based interventions in chronic care. One is care-coordination, which deals with how providers communicate with one another as well as how they communicate with patients. A second is the clinical encounter itself as a site to foster shared decision-making between patients and providers. And a third is self-management, where the patient becomes engaged in their own process of care. My work with the Center for Ethics deals with latter two. My work with care-coordination is the most recent, and comes as a result of working with a colleague of mine in the Writing, Rhetoric & American Cultures, Dr. Dawn Opel, and Dr. Cathy Abbot in the Dept. of Family Medicine.
In pursuit of a more integrated approach, we understand these three moments to form a feedback loop. And when things are working well, a virtuous cycle of communication-based therapy. Well coordinated provider teams work routinely with patients and others in the circle of care to select the best methods of treatment that patients self-manage with the aid of good information and feedback, building trust and confidence and leading to better overall health outcomes.
There is, I am happy to report, evidence that such an approach can indeed produce clinically measurable improvement in patients from medically underserved populations. My colleagues & I recently published a piece summarizing this evidence as it relates to the use of mobile phone technologies in primary care practices in a piece titled “Is Using Mobile Health Alone Sufficient to Enhance Patient Activation and Medication Adherence?” Spoiler alert: no.
But what does work is an approach we’ve tested and reported results on called Guidelines Applied to Practice. It combines provider training, patient group visit and a shared-decision making checklist at each patient encounter, AND mobile phone messaging between visits. Patients who participated in that program saw significant improvements in there adherence to blood pressure medications and in their systolic Blood Pressure over the course of 14 weeks as compared with those who only received text messages. The key, we think, is this loop as a whole. This is the signaling pathway that we need intact to see better health in patients managing chronic illness.
With Dawn Opel & Cathy Abbott, I have been focusing on the work of writing practices in the clinic and how health providers do (and do not) understand themselves as writing together as a patient encounter team. When they do understand themselves this way, they can organize their work better, bring consistency and reliability to their charting practices, distribute the key tasks associated with patient encounters more effectively, and perhaps most importantly work on their writing as something to improve the overall quality of care in the clinic.
The exciting thing about this work for Dawn and myself is that we are starting to see some real improvements based on the time we’ve spent in the family medicine clinics. Understanding primary care practice as a highly literate activity system, we have been able to use research methods and recommend changes that would be very familiar to all of you here today with the explicit goal of improving patient care. This is also seen by our co-author Cathy, who is a family medicine M.D. as well as a faculty member at MSU, as central to addressing real problems with provider morale, burnout and turnover.
What I’d like to leave all of you with is one of the more exciting implications of the model that is, nonetheless, I think a significant challenge for all of us in writing studies. It could be that we are all implicated in the growing problem of chronic illness in the U.S. and around the world.
Writing behaviors, not so much the texts themselves alone, are critical components of care for people with chronic illness in distributed health networks. Breakdowns in communication affect vulnerable populations more than those whose wealth, access to transportation, child care, and cultural capital make their personal communication networks more robust and fault tolerant. When it comes to addressing health disparities in chronic illness, better writing can help people lead healthier lives.
But if that’s true, that is the sunny side. It is also true — and this is something Dawn & I have started to take seriously — then we can’t leave the health of vulnerable people managing chronic illness up to others. We have to be ready to use our own expertise and skills to make a difference.
Aguilar, M., Bhuket, T., Torres, S., Liu, B., & Wong, R. J. (2015). Prevalence of the metabolic syndrome in the United States, 2003–2012. Jama, 313(19), 1973–1974.
Mol, A. (2002). The body multiple: Ontology in medical practice. Duke University Press.
Olomu, A., Hart-Davidson, W., Luo, Z., Kelly-Blake, K., & Holmes Rovner, M. (2016). Implementing Shared Decision Making in Federally Qualified Health Centers, a Quasi-Experimental Design Study: the Office Guidelines Applied to Practice (Office-GAP) Program. BMC Health Services Research 16:334. DOI: 10.1186/s12913–016–1603–3
Olomu, A., Kelly-Blake, K., Hart-Davidson, W., & Holmes-Rovner, M. (2018). Is Using Mobile Health Alone Sufficient to Enhance Patient Activation and Medication Adherence?
SGIM Forum 41.9 (September): 10–11.
Opel, D. S., & Hart-Davidson, W. (2017, July). Challenges to Patient Experience: Documenting Evidence-Based Practice in the Family Health Center. In International Conference of Design, User Experience, and Usability (pp. 702–712). Springer, Cham.
Opel, D. S., Abbott, C., & Hart-Davidson, W. (2018). Toward an Encounter Team Model of Clinical Project Management: A Needs Analysis of a Family Health Center. Technical Communication, 65(2), 181–193.
Sackey, D. J., & Hart-Davidson, W. (2016). Writing Devices. In Barnett, S. & Boyle, C. (Eds.), Rhetoric, Through Everyday Things. Tuscaloosa: U of Alabama P. 69–82.
Alif Fujar Yulianto for The Noun Project
Delwar Hossain for The Noun Project
Vectors Market for The Noun Project