As the population ages and health care improves, more Americans are living with multiple chronic conditions and disabilities. This has significant implications for providing, tracking and evaluating the quality of patient care, according to this essay in Health Services Research in 2020.

Current health care reform is based on efforts to improve data and move toward evidence-based performance measures and performance-based payments. This could have important consequences for people with multiple chronic conditions (MCCs) or disabilities. The author argues these people must be specifically considered when performing comparative effectiveness research; and suggests data that should be included.

Key Points:

• Performance measures and comparative effectiveness research generally are single organ or disease-based and either ignore the consequences of MCCs and disabilities or exclude these patients from the data, leaving large gaps in knowledge about how to treat this medically-complex population. This may subject patients to additional risk.
• The current national commitment to improve the health care data landscape will likely also improve the ability to monitor the quality of health care delivery to people with disabilities and MCCs.
• Collecting better data about this population, however, will require the current disease-based coding system to expand to recognize functional impairments, including the inability to participate in facets of daily and community life. Such systems exist but the cost and process of transition will be significant.
• A new coding system must also incorporate a way to code narrative text in the health records of this population.

The author includes a list of eight specific research recommendations for health services research concerning people with MCCs and disabilities. The author notes that, while improving the efficiency and quality of health care are obvious goals, attention must be paid to improving the quality of life and health outcomes for these individuals.