A key role of scientific program staff at a nonprofit is to assess the landscape of the field that your organization is funding, to evaluate the impact of grant-making, convene workshops, and share this work with the broader scientific community.
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Disease-focused nonprofit groups often serve as a "neutral convener," with the patient's best interests as the focus of their efforts. They can convene government agencies, pharmaceutical companies, academic scientists, physicians and patients. Such convenings can engage multiple industry partners — even those with competing products.
One example is the FDA-MRA Approaches to Neoadjuvant Therapy in Melanoma: A Public Workshop, co-chaired by Drs. Marc Hurlbert (Melanoma Research Alliance), Suzanne Topalian (Johns Hopkins), and Ashley Ward (U.S. Food and Drug Administration).
Under Dr. Hurlbert’s leadership, this public workshop engaged 23 faculty and an audience of 250 participants across the nonprofit, patient advocacy, academic, regulatory, government, and pharmaceutical sectors. The nonprofits' involvement included securing the speakers and support to underwrite costs, as well as marketing and producing the event. The event included live-stream participation and produced four edited videos for public use.
To engage the broader scientific community, Dr. Hurlbert worked with the other faculty to co-author a review article published in Clinical Cancer Research in January 2021.
A core component in scientific strategic planning is understanding the broader landscape for your disease and where additional investments of funding, expertise and time can help move the needle in advancing research.
Dr. Hurlbert and his team conducted an analysis of melanoma research funding between 2006 and 2018 from the largest government and nonprofit funding agencies. They found investments in melanoma research nearly doubled from 2006 to 2018, from $110 to $210 million annually.
Despite this doubling of investments, melanoma research only accounted for 3% of all cancer research funding. As the 6th most common malignancy, melanoma research is under-funded. MRA joined other nonprofits to advocate for the government to fund more melanoma research. This resulted in a special Melanoma Research Program that today provides an additional $20 million for melanoma research.
Evaluation of the impact of your investments is key to understanding progress and adjusting strategy and scientific priority areas. Published examples include an analysis of the Melanoma Research Alliance (MRA) research investments that showed MRA had touched all 11 of the latest melanoma treatments approved since 2011, and MRA’s portfolio was equally distributed across investments in immunotherapies and tumor-targeting kinase therapies. Another example is an analysis, in partnership with the MIT Sloan School of Management, of the economic and academic impact of BCRF investments produced intellectual property, patents, and 12 spin-off biotech companies.
