The 2021 BIO Patient & Health Advocacy Digital Summit Live Blog Feed. Sponsored by Neurocrine Biosciences.

Please note: all times listed below are Eastern Time, EDT.

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Friday, October 29
12:00 PM
Lessons Learned from Value Reviews

The following panel discussion is made up of the following speakers discussing the importance of value reviews:

  • Moderator – Patrick Plues, Vice President, State Government Affairs, Biotechnology Innovation Organization
  • Speaker – Cat Davis Ahmed, Vice President, Policy and Outreach, Familial Hypercholesterolemia Foundation
  • Speaker – Leah Howard, Chief Operating Officer, National Psoriasis Foundation

Health value assessments determine if healthcare intervention, surgical intervention, or therapy intervention should be effective in delivering an optimal healthcare outcome. This is an evolving field and a one-size-fits-all approach will not meet the need of all stakeholders.

Payers are looking for ways to measure value and patients are seeking access to treatments that improve their lives.

The value of participating in this process

Organizations may choose to participate in a value assessment to better understand their own role given that these assessments inform decisions that impact the access to care for the patient populations that they serve. In addition, a review can be an important source of information on the disease state that an organization assesses. In addition, for payer organizations, it may be the only source of information they read about an organization’s disease state. Other stakeholders such as pharmaceutical companies and device manufacturers are participating in these processes as well and this is an important opportunity to have the patient’s perspective heard.

The ultimate product of the work being done by ICER could become a tool that decision-makers, including payers could use to make coverage decisions. Given that this might be used by payers and policymakers to determine coverage and access, the participation of patient advocacy organizations ensures that these reviews are as accurate as possible about a disease and the patient experience of living with a disease.

Communicating with value assessment organizations

Patient advocacy organizations can bridge the gap between patients and value assessors. At the heart of this was bringing patients directly into the conversation. Connecting value assessors directly with patients is important to have not only the perspectives of issue experts from a policy standpoint be heard but also to give a voice to the experts with firsthand knowledge who are the patients actually living with a disease.

A key to successful engagement is working with organizations such as the National Value Council and its Value Classroom. Patient advocacy organizations have a unique vantage point from which to connect value assessors with clinicians to ensure that their perspectives are also taken into account in assessments.

Challenges that remain in value assessments

Barriers to having patients’ perspectives heard in value assessments may best be understood by comprehending the barriers that there are to patient advocacy organizations in these assessments. It takes time and resources to prepare and engage in these processes, including planning for the relevant budget allocation and staff time for patient advocacy organizations to connect with assessors.

Assessments rely on hard evidence to inform the model and overall reports and yet sometimes there are key evidence gaps such as when evaluating quality of life issues as well as how best to quantify patient preferences. There are places where patient advocacy organizations can fill in these gaps by generating data and publishing it or drawing attention to existing publications and putting together reading lists for assessors.

Even if there is not necessarily decades’ worth of data to share with a value assessor, there should still be important resources to share that could be very helpful to a value assessor. This information may not be a part of the model but at a minimum can become contextual considerations.

Tips for patient advocates beginning to engage with value assessors

Get up to speed by visiting existing resources such as the National Health Council’s Value Classroom and connecting with other advocates and advocacy organizations that have already engaged with value assessors. In addition, mobilize your patient community to engage directly with assessors by answering surveys and give feedback on them. In addition, start educating yourself right now on this to reduce the stress of the time and resource crunch when an assessment is announced.

What comes after value assessments?

Keeping in touch with payers is critical because ultimately all healthcare stakeholders should be treated as potential partners. Helping payers become more informed will hopefully result in better health outcomes for patients.

11:00 AM
A few more things we learned at PHAS 2021…

1. Digital technology can improve healthcare.

During COVID-19, telemedicine visits went from tens of thousands to millions practically overnight, said Anne Pariser, MD, Director of the Office of Rare Diseases Research at NIH’s National Center for Advancing Translational Sciences. 

“This had a real leveling effect in terms of access,” especially for patients who normally had difficulty traveling to see a doctor.

2. We must protect the Accelerated Approval Pathway.

Developed to allow for faster approval of drugs for HIV-AIDS, the Accelerated Approval Pathway allows limited, more focused clinical trials for drugs that treat rare, life-threatening conditions.

More than 250 vital drugs have been approved through the program since the 1990s, but it’s now under threat. “I think it’s important that people understand, it does not compromise rigor. So it requires that there be the same level of efficacy and safety for products that go through this pathway,” said Annie Kennedy, Chief of Advocacy and Policy at the EveryLife Foundation. 

3. When sharing your patient perspective with federal agencies, "focus on the disease."

"Focus on that clinical context. Focus on the disease," and not necessarily a particular drug or development program, said Theresa Mullin, PhD, Associate Director for Strategic Initiatives, U.S. FDA Center for Drug Evaluation and Research (CDER). “It's probably better and more useful to focus on your experience.” 

“Try to bring a diversity of perspectives, because we really do want to hear from the full range of the community,” she continued.

10:30 AM
Friday Tweets

As BIO's Patient and Health Advocacy Digital Summit comes to a close, here are a few more tweets to continue the conversation...







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