TABLE 3

Recommendations for Programs for CMC and Ethical Reasons for Recommendations

RecommendationsExplanation and Rationale
Use systems thinking• CMC are part of a system of care that involves the parents, family, many aspects of the health care system, as well as other systems (such as schools).
• Because all elements of these systems interact, an intervention focused on 1 part of the system may well have consequences, intended or unintended, on other parts of the systems.
Engage patients, parents, and families• Because patients and parents are the key stakeholders regarding the health and well-being of the patient, their perspectives, values, and priorities should guide the value proposition of a program.
• Doing so helps ensure that the program serves the interests of the intended beneficiaries.
• Engagement also helps to ensure acceptability and feasibility.
Specify program goals• This action enhances the transparency of the program.
• Doing so also provides a basis for accountability.
Specify anticipated benefits, burdens, and costs• Benefits and burdens are key ethical considerations.
• One goal is to promote fairness in the distribution of benefits and burdens.
• Cost is an ethical consideration regarding justice concerns and the stewardship of scarce resources.
Detail the intervention• This enables stakeholders to evaluate the benefits and burdens of the intervention.
• This promotes voluntary and autonomous decision-making regarding participation.
Assess the accuracy of case identification• This helps gauge an important aspect of the program’s ability to benefit CMC in a fair manner.
• This ensures that the selection meets stated program goals and values.
• This helps identify and reduce bias in the selection of participants.
Adopt formal and auditable consent and appeal processes• Informed consent is a cornerstone of ethical interventions.
• The appeals process promotes procedural fairness.
Make program features and performance metrics publicly available• Transparency is enhanced by open communication.
• Accountability is strengthened.