
How to Engage with ICER
For a standard drug review, our patient engagement process is typically 9 months long with several opportunities for the patient community to share, respond, participate, and be empowered by ICER’s work.
Phase 1: Share Your Lived Experience

- Scoping call with ICER’s research team: A virtual meeting to share about patient experience with a disease and treatment(s), and patient-important outcomes and priorities.
- Share Your Story Form: A 5-question online form designed for patients and caregivers to share about their lived experience with disease, treatments, and impact on daily life.
- Patient and caregiver small-group interviews: Semi-structured discussion groups to help the ICER team learn about patient preferences, experiences, and hopes for new and existing treatments. Participants are compensated $500 for their time.
Click here to view the full Share Your Lived Experience Guide.
Phase 2: Respond with Feedback to ICER’s Work
- Written feedback (public comments) on draft deliverables: ICER invites feedback on the Draft Scope, Model Analysis Plan (MAP), Draft Report, Policy Recommendations, and Patient Snapshot.
- Early review of Draft Report: ICER invites patient representatives to review the draft version of our report before publication. Early reviewers can provide feedback that the ICER team will consider for revision before the draft report is published. Patient experts are compensated $500 for their participation.
- Feedback calls: The Program Manager is always available during the ICER review to help schedule a virtual meeting for patients to provide feedback to the ICER team.
Click here to view the full Respond with Feedback to ICER’s Work Guide.


Phase 3: Participate in ICER’s Public Meeting
- Virtual attendee: Patients can register and attend ICER’s virtual public meeting for free.
- Oral comment: Deliver a 5-minute oral comment about the patient lived experience, as well as any comments, concerns, or feedback on the ICER report.
- Patient expert: Serve as one of two patient expert panelists during the public meeting to share the patient lived experience and answer any questions from the independent voting council. $500 compensation.
- Policy roundtable participant: Represent the patient perspective during a policy discussion with clinical experts, insurers, and manufacturers to address fair pricing, fair access, and future research for the treatment under review.
Click here to view the full Participate in ICER’s Public Meeting Guide.
Phase 4: Empower Your Community With Evidence
- Elevate the Patient Voice: The ICER Report provides an important way to share the patient perspectives on a treatment with those making decisions about drug pricing & insurance coverage.
- Advocate for Fair Pricing and Fair Access: We hope the ICER Report can serve as an evidence-based resource for your patient community to continue advocating for fair drug pricing and fair insurance coverage.

What to Remember

Fair Compensation for Patients
For time-intensive activities, ICER is able to compensate you for your participation.

No Technical Expertise Necessary
As patient representatives, you are already experts in the lived experience.

Our Process is Flexible
Engage with us as much or little as your capacity allows!
