Impact of Patient Engagement
Patient community input greatly impacts ICER’s final report and recommendations.
Why Does Your Voice Matter?
- As experts in the lived experience, patients and caregivers are able to emphasize important aspects of a disease and provide patient experience data for our clinical and economic analyses.
- Patient input helps highlight unique disease- or treatment-related challenges, relevant survey data or other patient-relevant data sources, impact on caregivers, and other important considerations for how to think about the value of a treatment.
- All of these patient insights are critical to informing a public discussion around fair pricing and fair insurance coverage for treatments.
In 2025, ICER conducted 8 drug reviews. See how patients engaged with us every step of the way!
By the Numbers
48
Individual patients & caregivers interviewed
81
Share Your Story forms received through Patient Portal
28
Public comments received on ICER’s Draft Scope & Draft Report
9
Patient experts who reviewed ICER’s Draft Reports
21
Patient experts & oral commenters at ICER’s public meetings
24
Patient advocacy organizations spoke with ICER
7
Patient groups who reviewed ICER’s Patient Snapshots
700+
Patient Snapshots downloaded from ICER’s website
See below for examples of how patient engagement has impacted ICER’s recent reviews:
Patient Advocate Perspectives
Learn More
Introduction to ICER | Learn about ICER’s work and impact in this introductory guide
Reach Out
Talk with us | Contact Cat Koola Fischer, ICER’s Senior Director of Patient Engagement at [email protected]
Patient Portal Links
Home Page
Who is ICER?
How to Engage with ICER
ICER’s Patient Council
Share Your Patient Story
Patient Guides & Summaries
ICER’s Instagram
Patient Portal FAQs
Impact on Clinical Conclusions
2023 Metachromatic Leukodystrophy (MLD)
Public comment on our MLD draft report led ICER to adjust our evidence rating to reflect greater benefit for patients in the early symptomatic early juvenile group.
2025 Spinal Muscular Atrophy (SMA)
Patient representatives emphasized that clinical trial outcomes fail to capture subtle but meaningful improvements in function. We updated our report to capture some of these meaningful improvements including increased lung capacity and bite strength.
2026 Obesity
Two patient groups reviewed the draft report before it was published. Based on their suggestions, ICER revised the report to mention issues with using body mass index (BMI) as the only way to measure obesity.
Impact on Economic Model
2024 Chronic Obstructive Pulmonary Disease
The COPD Foundation estimated that on average, caregivers of patients with COPD provide 20 hours of care per week. This input directly informed ICER’s economic model.
2025 Retinitis Pigmentosa (RP)
We heard patients require constant adjustment to new levels of visual ability and want treatments that offer stability or maintenance. Our economic model includes the number of years remaining with levels of vision and with light perception.
Click here to view the full RP Patient Snapshot. (Accessible version).
2026 IgA Nephropathy (IgAN)
Patients shared with us outcomes that would have a meaningful impact on their lives including kidney function as well as avoidance of dialysis and transplant which were all included in the economic model.
Impact on Patient Experience
2024 Schizophrenia
The Schizophrenia & Psychosis Action Alliance directed ICER to data on work and caregiving time that better described the societal impact of schizophrenia.
2024 Anemia in Myelodysplastic Syndrome
The Cancer Support Community shared data on 150 MDS patients from their “Cancer Experience Registry” which we incorporated throughout the Patient & Caregiver Perspectives” (Section 2) of the final report.
2025 Multiple Sclerosis (MS)
Patients highlighted experiences navigating the healthcare system; for instance, the lack of MS specialists, as well as the frustration with having to coordinate their own care when seeing multiple specialists. These insights are emphasized in our report.
Impact on Final Recommendations
2024 Pulmonary Arterial Hypertension (PAH)
Testimony from individuals living with PAH at the public meeting helped shape ICER’s recommendation for policy makers to reduce barriers to oxygen access.
2024 Transthyretin Amyloid Cardiomyopathy
Amyloidosis Research Consortium (ARC) provided us with data to support the average time for a correct diagnosis of ATTR-CM (6 years) which informed our policy recommendation to improve accurate and timely diagnosis.
2026 IgA Nephropathy (IgAN)
We heard from patients about the long journey of diagnosis and delays in care which can lead to worse kidney function by the time IgAN is diagnosed. This insight informed ICER’s policy recommendation to improve access to kidney specialists.