On average, respondents reported that, in the preceding twelve months, they have visited an emergency department 1.04 times, spent 2.05 nights in the hospital, attended 10.98 scheduled doctor or clinic visits, and seen a doctor or clinic 2.04 times on an unscheduled basis. When health utilization was examined by disease category, our analysis indicated significant differences among disease categories for each type of utilization (p<0.0001). Notably, those with digestive diseases reported the highest emergency room and hospital utilization, whereas those with rheumatologic and other diseases reported the highest doctor and clinic visits. Those with neurological disease reported the lowest overall healthcare utilization.

Care coordination was an issue among respondents. Fully half of respondents said that their doctors do not communicate with each other to coordinate care, and seventy percent said they have to put in a lot of effort to manage health care providers and coordinate their own care. Care coordination was cited as a greater problem by those with rheumatologic diseases, as well as the "other" category.  Over forty percent said they've been told by a doctor that they weren't really sick; twenty-seven percent were told by a doctor that they were mentally ill; nineteen percent said they were told that they were seeking unneeded drugs; and fourteen percent of them said that they have been told that they were taking up too much time. Fully thirty-four percent of respondents reported that a health care provider has given up on them, and fifty-eight percent felt that a doctor they saw did not understand the disease. All of these experiences were used to construct a single variable called "negative clinical experiences" wherein a higher score indicates more negative experiences. This score was slightly lower among respondents with neurological diseases.

From the point of view of health advocacy - an area dominated over the past two years by discussions of health insurance and health care reform - perhaps the most striking, albeit unsurprising, data relate to financing of health care. Although sixty-two percent of respondents have private health insurance, twenty-three percent have Medicare, and seven percent have Medicaid, more than half of them reported that they have skipped medical treatment due to cost. Thus, advocates must be mindful of the impact of under-insurance on the ability of people to access the care they need. What is and is not included in the essential benefits package that will become the standard for insurance coverage under health reform, effective in 2014, will have a tremendous impact on the ability of patients to obtain the care they need. One thing is certain: Achieving universal coverage is not the whole answer ; what is and is not covered matters just as much if one of our goals is to ensure that patients with chronic conditions adhere to doctors' orders so as to improve health outcomes and reduce costs.