Public input sought on healthcare reform law

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So far, the working definition says the research should help answer four questions for patients: 

• Given my personal characteristics, conditions and preferences, what should I expect will happen to me?

• What are my options and what are the benefits and harms of those options?

• What can I do to improve the outcomes that are most important to me? and

• How can the health care system improve my chances of achieving the outcomes I prefer?

To answer those questions, the working definition states, patient-centered research will: 

• Assess the benefits and harms of preventive, diagnostic, therapeutic, or health delivery system interventions to inform decision making, highlighting comparisons and outcomes that matter to people;

• Be inclusive of an individual's preferences, autonomy and needs, focusing on outcomes that people notice and care about such as survival, function, symptoms, and health-related quality of life;

• Incorporate a wide variety of settings and diversity of participants to address individual differences and barriers to implementation and dissemination; and

• Investigate (or may investigate) optimizing outcomes while addressing burden to individuals, resources, and other stakeholder perspectives.

PCORI is seeking comment for 45 days, through Sept. 2, and will update its definition based on what it hears from individuals and organizations.