3 key take-aways from BIO Patient and Health Advocacy Summit

How do you give patients a voice in the complex world of pharma and drug development? It's one of the central questions facing the biopharmaceutical industry in the era of value-based care, and the primary question that drives the dialogue at the annual BIO Patient and Health Advocacy Summit.

This year's summit, which took place in late October in Washington, DC, brought patient advocacy organizations, academic leaders, regulators, biotechnology industry leaders and other stakeholders together to discuss better ways to advocate for patient needs and make sure recipients of care have access to affordable and effective medicines. The summit, organized by the Biotechnology Innovation Organization (BIO), is one of the prime opportunities that experts in this space have to share best practices and new ideas. And this year, there was no shortage of useful insights.

Here are three key takeaways from the event.

Patient advocacy groups are one of the most crucial partners biopharmaceutical companies have when it comes to addressing patient needs. As such, how companies and advocacy groups collaborate—in terms of ethics, patient responsibilities and meaningful discourse—was a major topic at the summit.

In the lead-up to the summit, BIO released a document that laid out best practices and set the tone for discourse on the topic of what makes a successful collaboration. Guiding principles included recognizing the autonomy of patient advocacy groups to set independent agendas for the good of those for whom they speak and the need to define and recognize better solutions for patients as the shared objective of both parties.

The overarching message: biopharma and patient advocacy groups have to work together, and patients' needs must always be the primary driver of all communications and decisions.

The more innovation that there is in biopharma, the more necessary it becomes to ensure that patients can both access and afford the new drugs being created. How this happens was a major topic of discussion at the BIO Summit. Panelists examined how certain policies—such as those that put in place barriers to patient assistance programs—make it difficult to achieve the goals of accessibility and affordability.

Once again, the importance of collaboration between biopharma leaders and patient advocacy groups was highlighted. In this case not just as a way to take steps toward more accessible, more cost-effective medications, but as a means to keep patient populations both prepared and informed when it comes to their options.

This past summer, the Food and Drug Administration (FDA) released a report documenting guidance on patient-focused drug development for biopharma industry executives, FDA staff and stakeholders. And at the summit, panelists, including an FDA representative, sat down to discuss the fundamental role that these patient-reported experiences and outcomes must play in the development of new medications.

The panel discussion focused heavily on key themes from the FDA report, including ensuring sufficient representation of various patient populations and guidelines for collecting and managing data. Patient-reported outcome measures (PROMs) can illuminate everything from treatment adherence to unmet healthcare needs—valuable factors when it comes to biopharma's role as not just a creator but an advocate for better patient health. The need for these indicators is the basis of Cardinal Health's Patient-Reported Outcomes Research, which provides health systems with support to collect and interpret their patient data. Additional information on this topic was highlighted in a previous Essential Insights article.