Sunday, August 7, 2011

Self-Tracking, Psychiatric Ethics, and the Changing Patient-Doctor Relationship

A recent New York Times article - "A Dashboard for Your Body" - led me to nose around the web to learn more about developments in what is often called "self-tracking."

It's a fascinating area that is likely to change medical practice, the patient-physician relationship, and even the ways in which we think about ourselves.

Home monitoring devices are already letting clinicians - and perhaps more importantly, family members - keep a virtual eye on the frail elderly and homebound people with chronic illnesses. When our dispersed lives keep family members and close friends from keeping a literal eye on a person in need, devices with internet connectivity allow tracking of vital signs, blood sugar, movement in the living space, eating, and more.

These capacities would have been useful to me, an only child, and my father, in his 80s and legally blind from macular degeneration, during the years he lived in Florida, a thousand miles away. The telephone, and the front desk in the building he lived in, were the tools we had to rely on. Applied wisely, the emerging technologies will make it easier and safer for folks with reduced capacity for self-care to live at home, which is what most prefer.

My search led me to a fascinating article - "The Data-Driven Life" - that describes how some obsessive young technophiles monitor and chart their moods, alertness, uses of time, and much much more. While some of the self-monitoring verges on lunacy, some is potentially transformative.

In medical practice, we do a lot of data collection with our patients (think of the "blood pressure check" or monitoring drug levels). We also spend a lot of time encouraging patients to monitor themselves. The new devices shift the locus of control, power, and knowledge from physicians to patients. In place of coming to the office for a blood pressure check or a blood draw, the new technologies let patients do these themselves. In place of the physician's office notes the patient has his own medical record.

Some years ago a patient of mine with depression (working with her on that was my job) and brittle diabetes, consulted me about problems with her medical team. She had created spread sheets correlating glucose levels, insulin dosage, and other factors. These led her to hypotheses about her regimen. Her team didn't explicitly call her "uppity," but they didn't respond well to her wish to share the driver seat with them. Here my job was to coach her on how to shape a new form of collaboration with her team. Happily, it worked.

Self-tracking may turn out to be especially useful for psychiatry and behavior change. In mental health treatment, patients often relate to clinicians the way our forebears related to oracles. They pose questions like "why did I feel that way?" and "what put that idea into my head?" These are important questions, but seeing the clinician as the all-knowing source of insight is disempowering.

The article on "The Data-Driven Life" identifies implications for future psychiatric practice:
"...a 26-year-old filmmaker named Toli Galanis, [reported] 'I know that immediately after watching a bad movie I am more apt to be negative about my career prospects as a filmmaker'...tracking has made him better able to detect the influence of seemingly trivial circumstances on his mood and decisions.

The idea that our mental life is affected by hidden causes is a mainstay of psychology. Facility in managing the flow of thought and emotion is a sign of happiness and good adjustment. But how is it done? Nearly every therapeutic prescription involves an invitation to notice, to pay attention. Once we have a notion in our sights, we can attack it with an arsenal of tools: cognitive, psychoanalytic, even spiritual. But none of these will tell us if we’ve missed something. You may simply have failed to notice a debilitating habit, a negative correlation, a bad influence."
This next vignette shows how self-tracking can be combined with social support:
"Jon Cousins is a 54-year-old software entrepreneur and former advertising executive who was given a diagnosis in 2007 of bipolar affective disorder. Cousins built a self-tracking system to help manage his feelings, which he called Moodscope; now used by about 1,000 others, Moodscope automatically sends e-mail with mood-tracking scores to a few select friends. 'My life was changed radically,' Cousins told me recently in an e-mail message. 'If I got the odd dip, my friends wanted to know why.' Sometimes, after he records a low score, a friend might simply e-mail: '?' Cousins replies, and that act alone makes him feel better. Moodscope is a blended system in which measurement is supplemented by human sympathy. Self-tracking can sometimes appear narcissistic, but it also allows people to connect with one another in new ways. We leave traces of ourselves with our numbers, like insects putting down a trail of pheromones, and in times of crisis, these signals can lead us to others who share our concerns and care enough to help."
Toli Galanis shows how to use self-tracking as a source of insight to guide self-management. Jon Cousins shows how to use self-tracking to strengthen social support. Developing insight, improving self-management, and strengthening constructive relationships, are central components of virtually every form of psychotherapy. Tools that provide these functions will allow some potential "patients" to be their own therapists, and will enable others to come to therapy having done valuable "pre-work."

When I did my training, our patients' families and friends were often seen as intruders on the therapeutic process. In subsequent decades psychiatry and psychology wised up and learned to work with patients in the context of their social environment - using it when it was constructive and trying to change it when it was not. I foresee a time in the not-too-distant future when we'll be working with their iPads as well!


eric said...

Jim--Cool! At last year's Connected Health symposium, we learned how self tracking can be used to warn a person (and their friends, if they wish) that they're about to "use" cocaine (or other substance) before they consciously realize the urge.--Eric

Jim Sabin said...

Hi Eric -

It's always good to hear from you. I'm sorry for the delay in responding - I've been out of the country for a couple of weeks.

The tool you learned about is just the sort of innovation that self tracking can create. In working with folks on recovery from substance use conditions, relapse prevention is a key element. It sounds like the tool you refer to could be a VERY valuable part of that process.