Patients of quality-net health systems, such as Truman Medical Centers (TMC), often have difficult life situations and complex medical conditions. Daily challenges are frequently fueled by too little money, lack of access to places that could facilitate healthful living, unstable housing, few social supports and limited literacy. Also, vulnerable populations are frequently affected by poor health status, reflected in a greater prevalence of chronic diseases. At TMC’s Hospital Hill campus, for example, of 58,111 patients served in 2011, a stunning 70 percent had one or more chronic diseases. Regarding medications, patients in the initiative average 10 medications, with many taken multiple times per day.
To assist patients in addressing the daunting social and medical challenges hindering their ability to stabilize or improve their health, TMC initiated a project using both a nurse and a social worker to work with patients between medical visits with a goal of empowering the patients to better manage their medical conditions.
While this is a quality improvement project and not research, a robust evaluation was needed to help gauge successes and failures of the intervention. After examining many validated instruments, we settled on six. Ultimately, our grand evaluation plan proved problematic. Among the issues:
- The six assessment tools still required asking an overwhelming 109 questions each quarter.
- A nutrition label requiring reading and computational skills to assess health literacy proved too complex and embarrassed patients.
- In another instrument, patients could not understand the subtle difference between questions and seemed to answer in ways they thought would please the team member, skewing the results.
- Patients seemed afraid that what or how they said something would endanger their access to care.
- While the instruments do document that more than 40 percent of patients in the initiative have depression, many more exhibit signs of depression, perhaps reflecting that cultures differ in expression of depression.
We respectfully believe that many validated assessments have significant limitations when used with a very low socioeconomic population. In the end we are convinced that the best way to understand the patients and learn what they want and need is to listen to them.