Understanding the High Prevalence of Low-Prevalence Chronic Disease Combinations: Databases and Methods for Research. Stakeholder Perspectives


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


Interest in Multiple Chronic Conditions Research

  • Inform the treatment of specific patients
  • Practice guidelines
  • Clinical decision support
  • New models of healthcare delivery developed from MCC research
  • Quality measures for healthcare for patients with MCC
  • Cost effectiveness research of policy interventions and new payment models addressing patients with MCC
  • Research and policy agendas addressing MCC
Public Health Officials
  • Studies of disease prevalence and patterns
  • Development and evaluation of preventive services and public education campaigns
  • Development of guidelines for dissemination
  • Development of population measures for surveillance
Risk Adjusters
  • Detailed clinical and demographic health information
Provider Organizations/ Systems
  • Quality measures for healthcare for complex patients
  • Comparative effectiveness analyses of treatments
  • Cost of care for complex patients
  • Development of benchmarks for system dashboards
Financing Entities
  • Prevalence and cost of treating patients with specific chronic conditions
  • Identification of populations that account for the greatest costs
  • Identification of care systems or other healthcare innovations that successfully lower costs of treating complex patients
  • Care management and self-management
  • Symptom reduction and maximizing quality of life
  • Medication management
  • Out of pocket costs
  • Quality of care/patient-centered care for all conditions
  • Methods for studying MCC patients
  • Implications for RCT designs
  • Consistent measures of chronic conditions
  • Developing models for health system design improvement
Federal Demonstrations
  • Prevalence and cost of treating high-cost, complex patients
  • Impact of large-scale programs to improve self-management and decrease costs among complex patients.

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.

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