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Public input sought on healthcare reform law
A body of experts on Wednesday began seeking public input on the type of research that should be conducted under the auspices of the healthcare reform law.
The law created an independent nonprofit — known as the Patient-Centered Outcomes Research Institute, or PCORI — tasked with conducting "patient-centered outcomes research." The institute is now asking the public to help determine what exactly that means.
"There are different opinions about what patient-centered outcomes research includes," PCORI Executive Director Joe Selby said in a statement. "A work group within our Methodology Committee has created a working definition, so that we can have a shared understanding to guide our work. Now we’re seeking input from the public to make sure we have it right."
• 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.
