It is important to note that the significance of examining less prevalent, or rare, MCC combinations depends on the perspective of the stakeholder, which ranges from the patient to the provider to the health plan risk adjuster. A clinician trying to assess the best course of treatment for a patient has different information needs than does a health insurer that is attempting to reduce health care costs, or a state chronic disease director who wants to reduce chronic disease burden for a population of people. The level of detail needed about multiple chronic conditions at the individual level—and therefore the importance of the long tail—will vary according to stakeholders’ goals. Similarly, where research is concerned, the number of diagnostic codes needed to categorize individuals with multiple chronic conditions depends on the perspective of the information users. However, from the patient’s perspective, every condition and every diagnosis matters.
There are small numbers of patients in many, many combinations of MCC (Sorace et al., 2011) and any one provider or health plan may have extremely few patients with a specific combination of conditions. For a clinician the specific constellation of MCC is critical in determining what the best possible treatment is, but studies on small, unique sets of people with MCC are rare. Likewise, a person with a less prevalent combination of MCC may have difficulty finding information on how to best manage their personal conditions.
Policy makers are faced with a challenge because there is a lack of evidence on treatment for low-prevalence MCC and it is not clear at what level in the health care system interventions can be effective, or how transferable interventions are from one patient population to another. Demonstration projects, natural experiments and research studies can all contribute to new learning.
In the table below, we identify groups with a stake in multiple chronic conditions research and list their primary interests (See Exhibit 4). The degree to which stakeholders see value in studying less prevalent MCC is a matter of perspective and purpose. Similarly, the research aims will differ by stakeholder.
Exhibit 4: MCC Research Stakeholder Perspectives
The patient perspective was illuminated through discussion with a representative of “Patients Like Me,” a company that encourages individuals to share their medical and treatment information on a web platform, and to connect with other people who are also willing to share. The company initially invited consumers to identify themselves with a primary disease (like ALS) as they were promoting sharing by individuals with the same medical condition. However, the participants typically listed more than one condition in their profiles. After a number of years, the company opened the platform to allow participants to label their own medical conditions, and to choose which one was their “primary” condition rather than offering only pre-determined categories. Due to this expanded patient input, the number of medical conditions included on the website grew from 300 to 2,000 as people wanted more specific and discrete disease categories by which to identify themselves and their peers.1
1 Personal communication with Sally Okun, RN, MMHS, VP of Advocacy, Policy & Patient Safety at PatientsLikeMe.