News & Resources

Patient benefit news from around the country and benefit resources you can use.

Resources

Below are some selected news resources representing a diverse array of issues related to patient benefit. The coalition neither endorses nor necessarily supports any of the viewpoints included. These are for informational purposes only.

Types of Quality Measures

Agency for Healthcare Research and Quality | Accessed November 17, 2024

Guide explaining different categories of healthcare quality measures used to assess healthcare performance and outcomes

Clarifying the Meaning of Clinically Meaningful Benefit in Clinical Research: Noticeable Change vs Valuable Change

Weinfurt KP | 2019

Commentary distinguishing between changes patients can notice versus changes they find valuable in clinical outcomes

Our Measure of Medical Research Should Be Appreciable Benefit to the Patient

Lubowitz, J.H., et al. | 2019

Editorial advocating for patient-centered outcome measures that focus on meaningful benefits to patients rather than statistical significance alone

A Blueprint for Developing Patient-Centered Core Impact Sets (PC-CIS)

National Health Council | Cited December 1, 2024

Framework for creating standardized, patient-centered outcome measurement tools across different health conditions

A summit on amplifying voices of patients, caregivers, and people with disabilities in Inflation Reduction Act drug price negotiations

Miller, Maxine, et al. | 2024

Report on stakeholder engagement strategies to include patient perspectives in pharmaceutical pricing policy decisions

PIPC Recommendations for Patient Engagement

Partnership to Improve Patient Care | June 2024

Guidelines for meaningful patient participation in healthcare decision-making processes and policy development

Enhancing the Diversity of Clinical Trial Populations – Eligibility Criteria, Enrollment Practices, and Trial Designs Guidance for Industry

FDA | 2024

FDA guidance document on strategies to improve clinical trial inclusivity and demographic representation

Best-worst scaling: What it can do for health care research and how to do it

Flynn TN, Louviere JJ, Peters TJ, Coast J | 2007

Methodological guide explaining best-worst scaling techniques for preference elicitation and priority setting in healthcare research

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