Patricia Flatley Brennan, R.N., Ph.D., Project HealthDesign Director
About three years ago, our Project HealthDesign project teams began hearing something odd and unexpected from the patients involved in their user-centered design activities — the sound of health in everyday living! Health doesn’t come labeled in the professional, clinical-speak of signs and symptoms. It sounds like a family’s laughter, strained dinner conversations or the peaceful snoring of a parent who’s sick. It sounds like the birds one hears while taking an especially long walk or the raspy breathing that precedes an asthma attack. It sounds like the words an elderly woman uses when she explains to her physician that she “just doesn’t feel right” after taking her medication.
We’ve called the phenomena these sounds reflect “observations of daily living,” or ODLs. ODLs are sensations, behaviors, environmental exposures, thoughts and social experiences that serve as clues to health and health activities. We have been trying to better understand the stories they tell.
We’ve learned that with ODLs, there is a jargon or rhythm to the sound of health, and that it doesn’t sound at all like the sounds of health care. What it does sound like may be idiosyncratic, or unique for each patient. Like the more familiar signs and symptoms, ODLs provide snapshots into a person’s health situation. However, unlike signs and symptoms, which have a scientifically proven link to an underlying health process, ODLs represent what a patient pays attention to; this is why ODLs are so important for patient-centered care.
Our five current Project HealthDesign project teams are hearing about a whole new set of ODLs. Listen to what they are hearing:
The Embedded Assessment team at Carnegie Mellon University is using sensors embedded in household objects such as coffee pots, telephones and pill boxes to monitor how well elders are doing everyday activities. Understanding how well — or how poorly — an elder performs routine tasks may provide the early warning signals needed to bring help in a timely fashion. The sensors, if fired in the anticipated sequence, will show that the person is handling things just fine. However, sensors firing out of sequence or not at all suggests that some type of cognitive disruption is occurring — perhaps the elder can’t remember the steps to making coffee, or has forgotten to take meds at a certain time. Of course, one misstep doesn’t equate to profound confusion. That’s why we think of ODLs as sentinels, not signals. The ODL here is the firing sensors; this ODL must be interpreted and validated in order to serve as an indicator for action.
The iN Touch team from San Francisco State University is reaching out to teens who are both obese and at risk for depression. This group is going to use camera-equipped cell phones to prompt the teens to take photos of their food, record their menus on the spot and to rate things like: feelings, interactions with others, and activity levels. The ODLs here might sound like nutrition, mood, social activity and using the phone to capture information in real time. This information will be stored and reviewed later with a health coach, and could serve as the key for real success in weight management.
Again, awareness of ODLs is only part of the story. The other part is looking for patterns in the clues. It’s a lot like the sound of a crying baby — crying is an ODL, but distinguishing between the sound of a distressed cry and a bored cry means the difference between responding with comfort or stimulation. And, speaking of babies crying, we’ve wondered whether ODLs exist if you can’t hear them or know what they mean. But of course they do!
The FitBaby team at the University of California, Irvine is working with parents and young infants. They’ll be looking at how things like the number of diaper changes or the sound of a mom singing to a baby give clues to the quality of the parent-child relationships and the health of the baby. They’ve created a Mind Garden to appraise parents’ stress levels, and are using photos of baby poop to evaluate the adequacy of baby’s nutrition.
Over the next few weeks we’ll be introducing you to more sounds of health in everyday living. Join us on the journey to decode these clues and figure out how to use them to improve health!