5
Communications

In session five, the hypothetical voluntary health organization, the Colten Foundation, is trying to learn more about how best to communicate progress and setbacks with current and potential funders as well as its constituents. It recognizes the delicate balance that is needed between demonstrating progress and limiting false expectations. Workshop participants discussed effective communication strategies for disseminating information on research and other progress to potential funders and constituents.

In large part, the Colten Foundation’s successes or failures will rely heavily on communication. It will communicate with donors, staff, media outlets, funding recipients, government agencies, companies, industry groups, and other constituents. How well it succeeds at this communication will have a direct, daily effect on its ability to get things done, and that means it will directly affect the pace of research in its disease space and, ultimately, the well-being of patients. Good communication builds the foundation of trust between a voluntary health organization, its researchers, institutional partners, and constituents—trust that can lead to a powerful, positive reputation for the foundation, which has an impact on funding and effectiveness in the field. It is also a process of education and an exchange of ideas, and a good communication strategy needs to recognize that different audiences need different messages communicated via different media, said Sophia Colamarino, vice president of research at Autism Speaks.



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5 Communications In session five, the hypothetical voluntary health organi- zation, the Colten Foundation, is trying to learn more about how best to communicate progress and setbacks with current and potential funders as well as its con- stituents. It recognizes the delicate balance that is needed between demonstrating progress and limiting false expectations. Workshop participants discussed ef- fective communication strategies for disseminating in- formation on research and other progress to potential funders and constituents. In large part, the Colten Foundation’s successes or failures will rely heavily on communication. It will communicate with donors, staff, media outlets, funding recipients, government agencies, companies, industry groups, and other constituents. How well it succeeds at this communica- tion will have a direct, daily effect on its ability to get things done, and that means it will directly affect the pace of research in its disease space and, ultimately, the well-being of patients. Good communication builds the foundation of trust between a voluntary health organization, its re- searchers, institutional partners, and constituents—trust that can lead to a powerful, positive reputation for the foundation, which has an impact on funding and effectiveness in the field. It is also a process of education and an exchange of ideas, and a good communication strategy needs to recognize that different audiences need different messages communi- cated via different media, said Sophia Colamarino, vice president of re- search at Autism Speaks. 47

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48 VENTURE PHILANTHROPY STRATEGIES INSTEAD OF MANAGING EXPECTATIONS, LEAD Throughout the workshop, many participants mentioned the need to keep expectations appropriate. Dan Zenka, vice president of communica- tions at the Prostate Cancer Foundation, suggested leading with a clear and open communication strategy from the beginning so that there is no need to manage expectations because everyone is always on the same page (Box 5-1). Zenka pointed out that this process requires significant management buy-in long before any problems need to be addressed or before a substantial funding or research event occurs. In addition, an or- ganization and its researchers and institutional partners should be in fre- quent communication. “At the Prostate Cancer Foundation, staff are very close to those that we fund,” Zenka said. ACTING VERSUS REACTING Cathy Carlson, senior director of research information for the Re- search and Clinical Programs Department of the National Multiple Scle- rosis Society, advised that it was key to have advance notice from either grantees or medical journals about upcoming publications or results so that communication strategies can take advantage of opportunities to showcase readiness and a plan of action. Carlson agreed that communi- cation often becomes most critical when doing damage control or when trying to balance the high expectations for a very promising drug versus BOX 5-1 Steps to Creating Open Communication • Show where the foundation wants to go. Announce a program, most likely breaking it into phases, and announce what you believe the end goal is or what breakthrough is sought. • Define milestones and decision points where each phase of develop- ment will end and the next one will begin. Outline possible outcomes, along with problems and anticipated challenges. Define where the go/no-go decisions will be made. • Give lots of updates along the way. Communicate successes and fail- ures and explain what the failures teach you and where you will go from there. SOURCE: Zenka, 2008.

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49 COMMUNICATIONS the realities of the risks, for example. Zenka advised responding to nega- tive developments and issues quickly, where appropriate. It is important to explain successes and setbacks equally, while pointing out that there are other things in the pipeline, Carlson suggested (Box 5-2). EDUCATION Medical research is often as difficult to explain as it is to conduct. One of the most important functions of an organization such as the Col- ten Foundation is education for the public about the disease, for donors about the research process, and for others concerned about research re- sults, Colamarino stated emphatically. She shared that many times her constituents may not understand the basics of how research is conducted, and it is the voluntary health organization’s duty to explain this in the best possible way. Workshop participants also agreed that many times it is easier to educate donors and nonclinical professionals about programs in general than it is to detail a specific project. “It’s easier to sell a program where you have lots of things going on, which you can talk of as a group,” ex- plained Carlson. The communication difficulties can actually drive the work itself. Louis DeGennaro, chief scientific officer of the Leukemia & Lymphoma Society, explained that the society bundles its research pro- jects into disease-specific research portfolios of roughly 10 projects per portfolio, with roughly $1 million annual funding in each. “It’s allowed some ease in how we respond about advances. You may not have an BOX 5-2 Proactive Communications • Where possible, do not give time lines because there are always setbacks. • Do not assume people have read your existing communications. You can- not confirm that your message gets out to everyone. • Do not automatically assume that your people can connect the dots. You need to educate potential people by giving them specific talking points to help them get the message out that is both hopeful and puts things into perspective. • When communications must be reactive, it is important to react quickly. SOURCE: Carlson, 2008.

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50 VENTURE PHILANTHROPY STRATEGIES advance in each project each year, but you will have at least one advance in each portfolio each year that can be communicated,” he explained. The bundling also becomes a marketing tool, allowing donors to feel like they are contributing to fund a panel of projects rather than a specific project that may or may not yield a positive outcome, said Maria Carrillo, director of medical and scientific relations for the Alzheimer’s Association. The Alzheimer’s Association bundles its research projects under therapies, genetics, and molecular mechanisms when communicat- ing with constituents and chapter networks. The idea of packaging com- munication into easily digestible containers aids in communicating results as well. LISTENING A voluntary health organization cannot ignore its constituents, Colamarino said. While “listening to your consumer” may seem obvious, in an endeavor as complex as venture philanthropy, in a field as complex as translational research, how the voluntary health organization listens is very important. For some workshop participants, this ear to the ground starts with individuals giving presentations around the country and com- ing face-to-face with constituents. For others, such as the National Mul- tiple Sclerosis Society, it is an information resource center that is mostly centralized and acts as a central call-in center so that the society can track statistics on its constituents’ hot-button issues. That kind of direct hot line allows the society to tailor its communications. Listening to the questions donors and constituents ask, Carlson said, will tell an organiza- tion what it is not communicating properly and show it the gap that needs to be filled with a different message or the same information presented in a different way. TOOLS The good news for voluntary health organizations is that there are more pathways to eyes and ears in their communities than ever before. For example, Sharon Terry, president and chief executive officer of Ge- netic Alliance, runs an organization that fosters communication between diverse stakeholders working on genetics and health. Genetic Alliance has developed tools to bring together information from foundations and

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51 COMMUNICATIONS scientists and make it available across boundaries, pooling data into an extensive, consumer-friendly database that can be accessed through sim- ple web tools. Another piece of communication for Genetic Alliance is a resource depository, explained Terry, which has templates for material transfer agreements for patents and informed consent forms and information. This is backed up by a tool it calls “Wiki Advocacy,” which contains best practices for how to set up research projects, how to bring them through the pipeline, how to do translation, and more. Remarkably, all of this is aggregated by the community. Groups like Genetic Alliance serve as community outposts. Key points from session five are captured below (Box 5-3). BOX 5-3 Key Points: Communication Strategies for Patient Organizations • Communication is multifaceted and should be used as a tool for education and exchange of ideas in addition to getting your organization’s message out. • As a spokesperson for patients in your disease space, you can communi- cate to scientists and researchers about where therapeutic efforts will have the largest, most immediate effect on real patient welfare. • Find a way to deliver your organizations key message(s) in the midst of in- formation overload. • Be proactive by gathering information and preparing communications well in advance. • Try to always be acting, not reacting, to important news. • Be forward looking and communicate this view when there are setbacks. • Keep in mind that sometimes it is preferential to communicate information about programs in general, broad views than to detail a specific project. • Communication goes both ways; be open to listening and learning from your constituents.

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