Table 2.

Key measurement and data infrastructure questions to assess financial hardship

Level of frameworkExample questions
Patient and familyWhat are key measures of material, psychologic, and behavioral hardship? How do measures of hardship differ by type of cancer, time since diagnosis, treatment, for patients and caregivers? How is health insurance literacy best measured? What is the best mechanism and timing to collect and record financial hardship data (e.g., tablet in waiting room, online)? What is the association between financial hardship and health outcomes, such as health-related quality of life and survival?
Provider and care teamHow can provider and/or provider team assessment of patient costs of care and financial hardship be measured systematically? What is appropriate time period for measurement of financial hardship? How are patient responses about financial hardship best integrated with clinical workflow?
Health care systemWhat existing data sources and linkages can be used to assess financial hardship within a health system? Can measures of financial hardship be available in real time to inform decision-making and referrals? How can actions to address hardship be measured and their effects quantified? Is discussion of financial hardship a dimension of quality of care? Can data systems be used to prompt provider team about patient financial hardship (e.g., part of prior authorization for patients with health insurance coverage)?
EmployerHow can employment trajectory following cancer diagnosis be measured? What are data sources for assessing the role of employer features (e.g., health insurance coverage, workplace accommodations, paid and unpaid sick leave) when evaluating financial hardship?
State and national policyWhat existing data sources and linkages can be used to assess financial hardship? Which data sources and linkages can be used to evaluate the association between financial hardship and health outcomes, such as health-related quality of life and survival? Is discussion of financial hardship and action to minimize financial hardship a dimension of quality of care? Can quality measures be developed to compare providers and plans? How can existing surveys and research cohorts be enhanced to assess financial hardship?