How can patient organizations hoping to leverage the resources of industry researchers attract their support and establish formal industry partnerships? How can partnerships with industry partners ensure intellectual property considerations are appropriately navigated, patient data and research findings are responsibly managed and accessible, and partnerships are mutually beneficial and sustainable? As part of The Research Acceleration and Innovation Network (TRAIN) webinar series, FasterCures takes a deeper dive into navigating patient organization and industry partnerships, with lessons learned and considerations shared from two patient foundations and a pharmaceutical company: Friedreich’s Ataxia Research Network, Melanoma Research Alliance, and Astellas Pharma Inc. 

Moderator

Kapila Viges
Chief Executive Officer, MPN Research Foundation

Speakers

Jennifer Farmer
Chief Executive Officer, Friedreich’s Ataxia Research Network

Marc Hurlbert
Chief Executive Officer, Melanoma Research Alliance

Joseph Collins
Vice President, Medical Intelligence, Patient Insights and Solutions, Astellas Pharma Inc

Douglas Noland
Executive Director, Patient Partnerships, Astellas Pharma Inc

Summary

Product developers are critical partners in shepherding promising science and therapeutic candidates through the clinical and regulatory processes and eventually to patient end-users. Patient organizations seek partnerships with companies to help bring patient insights, participation, research, and data into industry R&D operations and advance clinical research for potential therapies. These partnerships may involve the exchange of data, resources, capital, expertise, and time from both sides. Panelists explored how to identify, build, and maintain partnerships to achieve mutually beneficial results and advance treatments for patients.

Where to Start When It Comes to Partnerships

Each panelist outlined the importance of forming key partnerships in advancing research and their strategies for establishing such relationships. Jennifer Farmer described Friedreich’s Ataxia Research Alliance’s (FARA) experience leveraging the patient community and partnerships with drug companies and the FDA to move research along. For FARA, data from their natural history study, advocacy, and strategic partnerships were key to achieving their first drug approval in February 2023. Marc Hurlbert outlined different ways the Melanoma Research Alliance (MRA) forms industry partnerships to advance its mission and goals. One key strategy MRA has deployed to foster those partnerships is its annual scientific retreat. This retreat brings together physicians, scientists, pharmaceutical and biotechnology representatives, government officials, and patient advocates to focus on the latest cutting-edge research in prevention, detection, and treatment development. Further contextualizing the discussion, Astellas Pharma provided an industry perspective on partnerships. Joseph Collins and Doug Noland explained Astellas’ strategy for building patient partnerships and integrating the real-world patient perspective throughout the drug development continuum to better inform innovation. Advice from the panel on starting the process of building strategic partnerships included:

For patient foundations:

• Become a trusted source for patients by producing high-quality data (through conducting robust studies, being transparent about data, getting studies published promptly, and sharing that information back with the community),

• Host formal interactions such as listening sessions and patient-focused drug development meetings, and

• Convene all stakeholders by bringing together the FDA, physicians, companies in the space, and patients. 

For industry:

• Start by doing a landscape assessment on the area of interest to understand who the main players are and possible partners,

• Map out potential partners’ capabilities with industry’s capabilities to ensure alignment, and

• Look for organizations who can bring your company up to speed quickly and who are collecting patient data—then start cold calling!

How to Identify and Develop Partners

The presenters laid out several ways to partner with stakeholders, as well as some of the reasons for forming those parentships. Critical ways patient foundations can partner with industry include 1) experiential partnerships, 2) content engagement partnerships, and 3) research investment partnerships. Experiential partnerships include convening industry partners, patients, researchers, and academics to discuss the latest research and opportunities to advance the science. Content engagement partnerships are useful for partnering with industry to provide educational materials to the patient community. Research investment partnerships are formed to create greater awareness around clinical trial opportunities and to facilitate and advance clinical research. This also involves partnering with industry to seek and fund proposals in scientific areas of interest. 
Industry partners with patients during various stages of the research and development process to ensure patients’ voices and perspectives are represented in treatments. Those stages include partnering early in the drug discovery process, during preclinical studies, in clinical development, and utilization. The presenters outlined various benefits of partnering with patient foundations and communities, including:

• To understand the real-world needs.

• To develop genuine partnerships to achieve better outcomes.

• To integrate the voice of the patients across the medicine lifecycle.

• To co-create strategies and solutions with patients.

• To deliver care and solutions that patients want and need.

• To build and connect a community of health stakeholders.

Tips for Maintaining Successful Partnerships

Once key partnerships have been identified and formed, a critical next step is maintaining strong and consistent connections. Jennifer Farmer and Marc Hurlbert shared perspectives and advice on how to build strong partnerships with industry that last, and Joseph Collins and Douglas Noland provided insights on how they have maintained strong partnerships with patient communities. 

For patient foundations:

• Support successful and robust patient engagement dialogues with industry partners throughout the year.

• Understand how conversations with industry influence the company’s strategy and plans.

• Measure how key partnerships are moving science and knowledge forward and share that data back with the community.

• Focus on developing longitudinal, rather than transactional, relationships. It is important to engage at multiple touchpoints.

• Form multiple partnerships, not just with one company. Working with all partners equally in terms of resources and services will ensure greater levels of independence.

• Ensure there is a clear agreement when it comes to Intellectual Property (IP). Level set expectations from the beginning, especially for pre-competitive outputs intended for broad distribution.

• Facilitate collaboration and maintain communication across all stakeholders, namely the scientific community, patient community, and regulatory agencies.

For industry:

• Institute empathy training for employees to strengthen patient partnerships.

• Evaluate how many programs include patient insights and identify where patient insights and perspectives are needed.

• Engage legal teams early and often when it comes to intellectual property.

• Don’t force relationships that are not feeling fruitful. Relationships should be organic and worth the investment.

Conclusion

The webinar panelists provided a variety of approaches and best practices for forming partnerships. Patient organization and industry partnerships are critical to driving treatment options for communities and ensuring that the patient voice is incorporated into R&D activities associated with those treatments. The Milken Institute thanks the panelists and moderator for sharing insights that can be leveraged by other organizations hoping to establish or strengthen key partnerships to advance research. 

To learn more about patient organization and industry partnerships, visit the FasterCures foundation company partnerships resources that were compiled as part of the TRAIN Toolkits series. 

TRAIN is an affinity network of foundations interested in taking a more strategic and entrepreneurial approach—what some refer to as “venture philanthropy”—to their role as funders of medical research. TRAIN convenes dozens of forward-thinking foundations to learn from each other and share their novel solutions with the rest of the medical research system. To learn more about becoming a TRAIN organization, visit the TRAIN application page.