Engaging with Patients
We formalized our approach to patient community engagement in its new Value Assessment Framework introduced in January 2020. The updated framework is based on our ongoing efforts to learn from patient groups and others about how to build a unique approach to value assessment that can reflect core principles of respect for all participants, transparency of methods and decision-making rationales, inclusivity of all perspectives, and objectivity grounded in rigorous evaluation of all relevant evidence.
Our approach to patient engagement is intended to provide a flexible system under which individual patients can describe their lived experiences and advocacy organizations can contribute in multiple ways depending on their organizational focus and resources. As much as possible, we try to engage with patient organizations well before topic selection to ensure understanding of ICER and opportunities to participate in a review.
Opportunities for the Patient Community to Engage with ICER
For more detailed information on participating in an ICER review, please review the Patient Participation Guide and contact the ICER Vice President of Patient Engagement, Yvette Venable at yvenable@icer.org for questions or further information.
• Propose a topic for an ICER assessment
• Participate in patient community information webinars (coming soon)
• Contribute your individual experience and perspectives through the Patient Input Questionnaire – a non-disease specific tool that helps our research team understand the lived experience
• Serve as a lead patient group partner and expert patient reviewer
• Communicate about the ICER review to patient and care partner members and direct them to the Patient Input Questionnaire
• Advise on population, interventions, comparators, outcomes through the scoping process
• Participate in discussions on research methods and nuances in the evidence base
• Partner with ICER on patient-generated research
• Contribute comments during open input and public comment periods on iterations of the report
• ICER’s Independent Voting Councils include individuals with a background in patient advocacy as well as clinicians, payers and other stakeholders. There are three councils and the membership changes annually but not from topic to topic
• At least two patient representatives serve as advisors to the Independent Voting Council members during the meeting to provide context and answer questions from the patient perspective
• Patient representatives and advocacy organization representatives participate in the Policy Roundtable – an important mechanism to put forth proposals for policy action that can help enhance access based on the voting results from the first part of the meeting
• Members of the public and advocacy organizations are invited to sign up for a public comment slot
• Partner with ICER to draft letters to regulators based on policy recommendations
• Determine use of evidence report and policy recommendations within your organization’s advocacy agenda
The “Big 5”: What We Need
to Learn from the Patient Community
The types of information most helpful to hear from patient representatives and consumer advocates are:
- The diversity of experience and unique considerations for individuals with the condition and their caregivers
- What matters most to patients in the outcomes from treatment
- Where can we find – or generate — patient-relevant evidence
- Current problems with access – prior authorization criteria, step therapy, costs/price, or other
- “Potential other benefits” and “contextual considerations”
