Communicating the Value of Transportation Research (2009)

Below is the uncorrected machine-read text of this chapter, intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text of each book. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

Non-Transportation Best Practices2Appendix Best Practice 1: St. Jude Children’s Research Hospital Best Practice 2: Susan G. Komen for the Cure® Best Practice 3: Consultative Group on International Agriculture Resources Best Practice 4: Association of Fish and Wildlife Agencies These are condensed from the full best practices review presented in the fi nal report for NCHRP Project 20-78, “Communicating the Value of Research.” Guidebook Non-Transportation Best Practices 55

56 GuidebookCommunicating the Value of Transportation Research Context The mission of St. Jude Children’s Research Hospital is to advance cures, and means of prevention, for pediatric catastrophic diseases through research and treatment. Most importantly, St. Jude’s goal is to increase the survival rate of children suff ering from these diseases. St. Jude welcomes referrals from treating physicians of children and adolescents with newly diagnosed untreated or suspected cancer; HIV infections; or certain hematologic, immunologic, or genetic diseases. Since the hospital is a research center, every child accepted is enrolled in a specifi c study or “protocol.” Information gathered from these studies is used in developing better treatments. Research eff orts are directed toward understanding the molecular, genetic, and chemical bases of catastrophic diseases in children, identifying cures for such diseases, and promoting their prevention. Research is focused specifi cally on cancers, acquired and inherited immunodefi ciencies, infectious diseases, and genetic disorders. The current basic and clinical research at St. Jude includes work in gene therapy, bone marrow transplant, chemotherapy, and many more. Leaders of St. Jude and The American Lebanese Syrian Associated Charities (ALSAC), the fundraising arm of the St. Jude organization, are crucial players in communicating the research conducted at St. Jude. The hospital and ALSAC also have staff dedicated to communicating within diff erent areas of the organization through publications produced by scientifi c editors. The development of partnerships with medical institutions and fund- raising organizations to recruit support for key programs is paramount. (St. Jude has a specialist for handling each type of media, fundraising, and physician referral communication). Key audiences include patients—and their parents—physicians, donors, and the general public. Communication Approach Communication at St. Jude is centralized, but compartmentalized. All communication initiates from St. Jude’s main campus in Memphis, Tennessee; however, the hospital, fundraising arm, and physician referral units all have their own communication specialists who generate communication for their own unit. Each communication unit incorporates information to demonstrate the value of St. Jude research in nearly every communication product created. Outcomes The value of research is communicated in terms of lives saved and the number of new and improved treatments through simple and easy-to-digest facts and updates. St. Jude facilitates frequent updates focusing on the research results and their direct impact on patients. St. Jude Children’s Research Hospital1Best Practice

Context Komen for the Cure is the world’s largest grassroots network of breast cancer survivors and activists working to save lives, empower people, ensure quality care for all, and energize science to fi nd the cures. Since 1982, Komen for the Cure has invested nearly $1 billion in eff orts to fulfi ll its promises, making it the largest source of nonprofi t funds dedicated to the fi ght against breast cancer in the world by seeking breakthroughs in cancer diagnosis and treatment. More than 100,000 volunteers, the key actors in Komen’s communication, make up a network of local affi liates. These volunteers keep the issue of fi nding a cure for breast cancer in the public eye. Some volunteers are involved in Komen’s Champion for the Cure, which is a subunit of Komen that works to educate elected offi cials and Congress about breast cancer research and issues. Communication Approach Komen relies on its grassroots advocacy network to disseminate information to all audiences with whom it communicates. This is particularly true for communication with media, the public, and policy makers on a local affi liate level. The headquarters offi ce of Komen for the Cure employs communication specialists who create materials and make them available to local affi liates. The single, most important message the Komen for the Cure organization works to broadcast about the research it funds or the research it supports is that the research saves lives. Challenges The most daunting challenge it has faced with communicating about research and its value is that “a lot of people, including many members of the press, see the word ‘research’ and either think they can’t/won’t understand it or they are afraid to even try. Coupled with this is the fact that Komen funds a lot of ‘basic’ research—inquiries at the cellular level, etc., and it is, at times, diffi cult to follow and even more diffi cult to visualize how the research is eventually going to benefi t the patient.” To address this challenge, Komen off ers consumer-friendly breast health and breast cancer information congruent with eighth- to tenth-grade reading levels. The organization produces reader- friendly research/researcher profi le stories for use in newsletters and on Komen’s website. Komen has worked over the years to make sure that reporters and editors know that when they come to Komen, they will receive reliable information and access to some of the world’s leading breast cancer researchers and clinicians if they want to go in depth on a particular subject or they need more context. Komen also added a chief scientifi c advisor, Dr. Eric P. Winer, an internationally known oncologist and educator from Harvard, to head its Scientifi c Advisory Board, composed of leading breast cancer researchers and clinicians. This board off ers expert comment and perspective on breaking news in the breast cancer arena. Dr. Winer and the board make sure that Komen issues news and updates on research that are reliable and evidence based. Outcomes Komen has several measures for determining the success of its communication, including communication about research and its value. Indicators of successful communication regarding research include the numbers and types of media calls it receives, the number of hits Komen receives on a particular story on its website regarding grants and the research, the number of inquiries it receives about its research eff orts, and the number and caliber of grant applications it receives—all of which are on the increase. Donations to Komen for the Cure continue to increase, and the participation in Komen events, such as the Race for the Cure®, continues to be robust, as well. Funding from partner programs is expected to rise by nearly 40 percent this year. Susan G. Komen for the Cure®2Best Practice Guidebook Non-Transportation Best Practices 57

58 GuidebookCommunicating the Value of Transportation Research Context The Consultative Group on International Agricultural Research (CGIAR) is a strategic partnership of countries, international and regional organizations, and private foundations supporting the work of 15 international centers to foster sustainable agricultural growth through high-quality science aimed at benefi ting the poor through stronger food security, better human nutrition/health, and higher incomes and improved management of natural resources. Originally focused on increasing crop production for specifi c critical food crops, CGIARS research today incorporates biodiversity and environment research. Key actors in research and communications eff orts of CGIAR are its member organizations, the leaders of those organizations, and a CGIAR staff based in Washington, D.C. Their audiences include international aid agencies, policy makers (i.e., U.S. Congress and leaders of developing nations), private organizations and foundations, natural resource organizations, and the media (including international media). Communication Approach CGIAR uses both a centralized system of communication and local communication at its 15 centers. The foundation for the centralized system is the Internet—to keep members, the media, and mainstream interests informed on the most important and current issues. A more personalized approach is taken for policy makers and elected or appointed offi cials. CGIAR also leverages its members’ and partners’ communication abilities to disseminate information. For example, local CGIAR centers participate in radio interviews and local media discussions, a partner organization may produce a video that incorporates video from CGIAR, or research results from CGIAR can be found on links of websites of CGIAR partners. CGIAR believes communicating the value of the research conducted must include concrete, compelling messages that emphasize the impacts of research conducted. The results of the research must be clear, and communication must link the results to CGIAR’s goals of reducing poverty and hunger and protecting the environment. CGIAR often communicates these results in written materials as “leave-behinds” for offi cials in order to reinforce their face-to-face communications. Challenges CGIAR generates a large amount of information; one challenge, therefore, is that recipients can often feel bombarded and overwhelmed. This is particularly true for one particular audience—policy makers and offi cials—with whom CGIAR judiciously uses personal contacts to address this issue. Another challenge cited by CGIAR is that written communications often go unread, no matter how they are distributed. To address this challenge, CGIAR has put more focus on media coverage and fi nding ways to tell stories that reinforce the messages it wishes to convey. Outcomes CGIAR measures its success of communicating the value of research through increases in the number of donors and amounts of donations to its programs. The organization considers its communications to have been “moderately” successful over the past six years, as it has been able to garner new support and maintain existing support in a “competitive environment.” Consultative Group on International Agriculture Resources3Best Practice

Context The Association of Fish and Wildlife Agencies (AFWA), representing all of North America’s fi sh and wildlife agencies, promotes sound management and speaks with a unifi ed voice on emerging fi sh and wildlife conservation programs and activities to protect the continent’s natural resources. A Science and Research Liaison within the organization works closely with a variety of partners to initiate and provide timely, credible, science-based information that can be used by resource managers to protect and manage fi sh, wildlife, and their habitats in the public interest. Current issues involved in AFWA research include the impacts of wind power on fi sh and wildlife, global climate change, and hurricane restoration and recovery. The AFWA considers its members to be its primary audience. The U.S. Congress, sportsman’s organizations, conservation groups, and the general public are also considered to be key audiences. The AFWA has a Science and Research Program, which is designed to strengthen cooperation between state, federal, private, and international agencies and partners. The Science and Research Program seeks to expand and enhance scientifi c capabilities and services by matching state research needs with the science capabilities of federal agencies. Communication Approach Targeting communication materials and messages to specifi c audiences is common practice for the AFWA. The association creates several materials that are similar (such as newsletters, information kits, and fact sheets), but distributes the materials using diff erent methods, depending on the audience. The AFWA believes in being creative with communications, particularly to bring attention to specifi c elements of fi sh and wildlife successes. An example of this creativity is the awards they bestow upon congressional members. Building relationships with key decision makers, such as congressional offi cials, is considered critical to the AFWA. Regular, personal contact helps create a presence for the association and has helped the AFWA build a reputation among those offi cials. Developing relationships with congressional staff , as well, is considered as important as developing relationships with congressional offi cials. Furthermore, fi nding champions who will advocate for the association, its mission, and its research eff orts is a part of the AFWA’s communication strategy. Challenges Information overload on the part of communication recipients is considered one of the challenges of communication for the AFWA. Another challenge is ensuring that recipients understand the information given to them, particularly when it involves complex, technical information. The association focuses its communication eff orts on issues of current interest, which is largely defi ned as those issues deemed most critical by the public. To ensure there are no misunderstandings or miscommunications about the information it distributes to congressional and elected offi cials, the AFWA feels it is imperative to have someone discuss the information with the offi cial’s staff beforehand. Outcomes With goals of increasing stable, long-term funding through federal legislation and seeking annual congressional appropriations to help fi nance fi sh and wildlife conservation programs, the AFWA has successfully targeted Congress as its key audience. In 2000, AFWA eff orts included passage of the Wildlife Conservation Restoration and State Wildlife Grants Programs. In April 2006, when a massive cut threatened the State Wildlife Grants Program, the association led an intensive fi ve-week campaign of grassroots leadership and media to help restore program funding in the Senate. Association of Fish and Wildlife Agencies4Best Practice Guidebook Non-Transportation Best Practices 59