NHC shows disappointment over PCORI Board member appoitnments

As organizations that are committed to promoting accurate and appropriate evidence-based policies and practices to improve the quality of health care services in the United States, we are disappointed that the appointment today of 19 members to the Board of Governors for the new Patient-Centered Outcomes Research Institute (PCORI) includes only one Board member that directly represents patients.

There is no question that all the members who have been appointed will bring substantial knowledge and professional experience to this critical initiative. However, we believe there needs to be a more significant and substantial representation of patients if we are to ensure that they have a meaningful role and voice in comparative effectiveness research.

The National Health Council and The Working Group on Evidence-Based Health Care strive to empower patients and consumers by involving them in designing and prioritizing research, as well as reviewing evidence and contributing to its translation, dissemination and implementation. We believe it is essential to broaden the participation of the patient in all aspects of comparative effectiveness research if we are to improve the usefulness of evidence for consumers and clinicians. Significant roles for patient advocates are essential to ensuring we effectively evaluate and improve health care services and therapies.

We look forward to close working relationships with the PCORI Board and hope that as openings occur on the PCORI Board, voluntary health organizations will be more represented. This is essential to ensure that patients have a meaningful role and voice in these critical decisions.