Including the Patient Perspective

In all our reports, we strive to include the patient perspective at every step of the process. Our reports benefit from informative, productive conversations about the issues that really matter to patients. When patients are involved, our reports become infinitely more comprehensive, actionable, and accurate.

During development of our psoriasis report, we were lucky to work closely with the National Psoriasis Foundation (NPF) from the very beginning of the process.

The below clip shows the public comment from Michael Siegel, PhD, Vice President of Research for NPF during our public meeting on November 18, 2016. We appreciate Dr. Siegel’s words of support for our process, and we look forward to future opportunities to form similar relationships with patient groups for our current and future topics.

“First and foremost I’d like to thank ICER for…engaging relevant stakeholders including the National Psoriasis Foundation in the process from start to finish. I really commend you on this effort and it’s evident in the evolution from the Draft Scoping Document to the Final Document to the Final Report, how much our voice was heard.”

– Michael Siegel, PhD, Vice President of Research Programs, National Psoriasis Foundation

In addition to Dr. Siegel’s public comment, the NPF was further represented at the public meeting by Leah McCormick Howard, JD, Vice President of Government Relations and Advocacy. Ms. Howard participated in the policy roundtable discussion, sharing important patient perspectives on living with psoriasis, barriers to treatment, and how the health care system can be improved to better serve patients with psoriasis. A recording of the full policy roundtable session is available here (beginning at about 1:39:30). You can also read the NPF’s written comments on our draft report here, beginning on page 38.

Through our interactions with NPF, we learned things that made the report more accurate and actionable. They highlighted the difficulties with step therapy and prior authorization that patients with psoriasis face. They emphasized how much the side effects of the disease can affect a patient’s day-to-day life. They truly helped us gain insight into what it’s like to live with psoriasis- acknowledging, of course, that every patient’s experience is a little different.

Wondering how the NPF was involved, or how you can get involved with an upcoming report? Find out more about some of the opportunities for patient and stakeholder involvement in our process here.