Posted February 16, 2009 by Lygeia Ricciardi
To shed further light on Observations of Daily Living (ODLs)--a central theme of Project HealthDesign’s work, present and future--I interviewed grantee Stephanie Fonda, PhD, a Senior Research Scientist at the TRUE Research Foundation.
Stephanie is the Principal Investigator of a project on diabetes self-management. She leads a team that has developed an application to help patients with diabetes to track, analyze, and alter their diets, physical activity levels, use of medication, and moods. ODLs are measures that patients record themselves—for example, an individual’s log of foods eaten over the course of a day.
A few observations from Stephanie about patients’ collection of their own ODLs:
Data collection is incredibly burdensome – This is perhaps not surprising when you consider number of types of data that would be helpful to track and analyze. As Stephanie and some of the patients she’s worked with point out, if you track every type of data pertaining to diabetes the experts say would be useful, data collection could become your full time job--and the same applies to many other health condition. This basic concern is a motivation for many of Project HealthDesign’s grantees—who are working to make data collection less burdensome for patients so they can avoid burnout.
Data collection can be embarrassing – Reading blood glucose levels in particular is something that many diabetics find embarrassing—some would even say taboo—in public. It generally involves pricking a finger or other body part to collect a drop of blood for analysis with a blood glucose meter. Some patients go to great lengths to keep the process private, hiding in bathroom stalls or other awkward (and potentially unsanitary) places. While certainly not all diabetics are embarrassed by reading blood glucose levels publicly, collecting ODLs can in general be awkward: for example, many people don’t want to photograph or write down the details of their meals while their dining companions are just eating.
Data collection can be emotionally fraught – While most patients Stephanie works with have the desire to monitor fluctuations in their basic health measures, the very act of data collection can increase stress levels. For example, she told me about a continuous glucose monitor, a device used by some patients that eliminates some of the hassle and potential embarrassment of the traditional meter. The continuous glucose monitor relies on an under-skin sensor that regularly transmits readings to an outside device such as a PDA. Most alert the patient if blood glucose levels drop too low with a buzzer or alarm. While these warnings can be helpful, they can also be upsetting, particularly if they go off in the middle of the night. A minute-by-minute reading of your blood glucose levels can also feel intrusive and distracting rather than freeing—for some people it is hard not to become obsessively focused on it.
In her keynote address at the Project HealthDesign Expo last fall, Amy Tenderich, the blogger from Diabetes Mine, made some observations similar to Stephanie’s about the burden and embarrassment of living with diabetes and collecting ODLs.
These observations beg a couple of interesting questions. For example, as Stephanie asks, is it ideal or even useful to track ODLs all the time, or just at certain intervals? Perhaps it's better to do so only when you are traveling, or at other points when you depart from established routines. Appropriate intervals for collecting ODLs are likely to vary in part based on different health conditions and types of observations.
On the other hand, the fact that recording behaviors and environmental factors causes you to be more aware of them is not necessarily a bad thing. If you know you will have to record your actions, you are more likely to run the extra mile (and skip the extra cupcake). Making the process of data collection for ODLs too seamless could deprive patients of the cognitive processes of better understanding and reshaping their own behaviors.
In addition to learning about the best ways to collect ODL data, Stephanie and her team are working on ways to present data analysis meaningfully. The challenge involves not only finding appropriate media and formats to share information (via video, audio, etc), but also perfecting the tone of communication, which, according to Stephanie, is very important to the patients she’s worked with. While some like to be praised for “good” behavior, others prefer to be warned or admonished in connection with “bad” behavior. Much remains to be done in understanding and meeting the unique needs of individuals regarding ODLs.... Please let us know if you have particular questions or topics you would like to see addressed.