Who gets a seat at ICER’s table? Hint: It’s not patients

As we continue the move toward a value-driven health care system, efforts to develop tools supporting patient decision-making will play a central role. These tools, including emerging value frameworks, have the potential to significantly impact all health care stakeholders, but patients and providers in particular. If designed well, value frameworks can facilitate informed, shared decision-making and improve the quality and efficiency of health care delivery. If designed poorly without the disease-specific expertise of patients, providers and the biopharmaceutical industry, they run the risk of limiting patient access to treatments and halting innovation.

The Institute for Clinical and Economic Review (ICER) framework is an example of a tool that was developed from the perspective of only one stakeholder group: payers. ICER has strong ties to the payer community, begging the question: Does ICER understand what other stakeholders, particularly patients, value? Despite ICER’s recent statement, “We firmly believe we cannot do our work without the insights we gain from patients and patient groups,” the answer is in the numbers: Three patients have seats across its governance board and four advisory boards. In total, patient voices represent just 5 percent of ICER’s leadership.  

ICER recently added a patient to its governance board, but the ongoing absence of the patient voice in ICER’s framework remains apparent. In a recent Morning Consult op-ed, a patient advocate stated that “Patients have respectfully highlighted the flaws in ICER’s methodology, scoping reports, voting questions, and stakeholder engagement process which seriously undermine any 'value' articulated in their reports.”

Other stakeholder groups, including clinicians, have noted ICER’s lack of engagement with disease-specific experts. In comments submitted to ICER, the Association of Community Cancers encouraged ICER to “limit voting members of panels to subject matter experts in the health interventions and disease areas being reviewed …”

In PhRMA’s recent comments to ICER, we recommended that they meaningfully engage with stakeholders from the start to the finish of the value assessment process, including in priority setting and development of their evidence reports.

ICER refers to itself as a “trusted non-profit organization that evaluates evidence on the value of medical tests, treatments and delivery system innovations and moves that evidence into action to improve the health care system.” An organization with this goal could be useful as we move toward a personalized, value-driven health care system, but ICER seems more bent on advancing misleading claims from pharmacy benefit managers and insurers about spending on innovative treatments and cures.

The lack of stakeholder diversity in ICER’s governance calls its credibility into question, but more importantly, has the potential to jeopardize progress in the fight against devastating diseases, such as diabetes, asthma, multiple myeloma and non-small cell lung cancer, among others. Now is the time for ICER to provide patients with sufficient representation at their table and acknowledge the complexities of treating individuals.

Learn more about how ICER’s methodology fails to meet patients’ needs here.

Read more about PhRMA’s policy solutions to promote value-driven health care here.