Fourth Annual Public Interest Organization Meeting

Roundtable: How to Develop and Find Support for Workshops and Conferences
February 5, 2003 - Bethesda, Maryland

Dr. Lenfant introduced the five members of a resource panel who gave brief presentations on their experiences in developing and finding support for workshops and conferences:

• Ms. Paula Yette Polite, President, Sarcoidosis Research Institute, Memphis, Tennessee
• Ms. Sue Byrnes, Executive Director, the LAM Foundation, Cincinnati, Ohio
• Dr. David Robinson, Deputy Director, Division of Heart and Vascular Diseases, NHLBI
• Ms. Lorna Stevens, President and Co-founder, Neutropenia Support Association (NSA), Inc., Winnipeg, Manitoba
• Dr. Deborah Beebe, Director, Division of Extramural Affairs, NHLBI

Dr. Beebe moderated the panel.

Ms. Polite described the following key steps in developing a strategy for finding support for workshops and conferences.

• Consider all possible expenditures (e.g., travel expenses, honoraria, printing and postage for publicity, meeting space, and photographer or videos).
• Create a matrix of your total budget to show how much support you will request from each funding source.

• Create a time line for achieving your goals.
• Assign specific persons to accomplish each goal.

• Match your organization's areas of interest to those of specific funding sources (corporations, foundations, government agencies, professional societies).
• Determine the best time in each source's funding cycle to seek support.
• Network with your advisory board, friends, and volunteers for leads to funding sources.
• Do your own research to identify potential sponsors. Consider
• applying for NIH conference grants.
• collaborating with other PIOs.
• contacting sources (e.g., local and national centers supporting grants, foundations) you can identify on the Internet or in your local library.

• Write a cover letter and include a 1-page Executive Summary of your organization, conference, and request.
• Write a detailed proposal describing
• your organization.
• the goals and objectives for the conference.
• your needs assessment.
• the importance of the issue.
• the link to the funding source and the potential benefits for it.
• your conference marketing strategy and budget.
• Consider developing a "sponsorship package" that specifies benefits for different levels of sponsors.

• Tell them about your organization.
• Articulate your organization's vision and mission.
• Outline the goals, objectives, and agenda for your conference.
• Highlight key points of your organization's strategic plan.
• Indicate why your issue is important.
• Explain the results of your needs assessment and how your organization can meet these needs.
• Identify the market you serve.
• State why the funding source should care about your cause and how the source will benefit from supporting your organization.
• Be specific about the funding support you want.
• Ask for in-kind contributions (e.g., meeting rooms, airline travel, printing, supplies, public service announcements, United Way gifts) from organizations in your community.

• Contact them to ensure that they received your package and to clarify any issues.
• Say "thank you" to those who gave you support.
• Thank those that did not give support, for their time, and ask how you can improve your proposal next time.

Ms. Byrnes emphasized that research conferences provide a unique opportunity to "build excitement" about the science of a disease among scientists and patients. Conferences enable scientists to advance research by sharing information on diseases in a single setting, integrating research ideas, identifying new research directions, developing collaborations, and reaching consensus on research findings and opportunities. Conferences enable patients to become educated about their disease, learn about research in progress, enjoy the camaraderie of others involved with their disease, and provide support for other patients.

Synergy of scientists and patients at a research conference can influence scientific directions, and Ms. Byrnes cautioned the group never to underestimate the impact of patients who share their experiences and needs at a conference. The LAM Foundation Research Conferences, for instance, include patients as an integral part and schedule them to give 5-minute presentations before each scientific presentation. Ms. Byrnes shared some very positive feedback from patients and scientists participating in these conferences.

Drawing from the experience of the LAM Foundation, Ms. Byrnes conveyed key messages about organizing and developing a conference, raising funds for a conference, negotiating "from the heart," and building relationships. To encourage leaders of newer organizations, she said "Don't hesitate to start small — your organization is never too young to have a conference!" Some of her other messages are listed below.

• Organize your conference to include both basic and clinical research sessions, poster sessions, and patient sessions that run concurrently.
• Invite physicians, scientists, and patients and their families, and create an agenda that allows them to move easily among the sessions.
• Be aggressive in identifying high-caliber scientists and speakers, and bring new speakers "to the table" each year.
• Choose speakers for the patients' sessions who interact and relate well to patients.
• Offer travel awards to young investigators if possible.
• Mail the agenda and the abstracts of presentations to all participants before the conference.
• Give patients an active role in the conference, and prepare them for a bittersweet experience.
• Have patients speak before each scientific session.
• Honor individuals who have advanced the science and who have supported your effort with funds and donations.
• Leave plenty of time for questions and answers.
• Include a roundtable discussion at the end to evaluate the conference and plan for next year.

• Engage the NHLBI in cosponsoring your conference — apply early for a conference (R13) grant.
• Hold a fundraising event (gala) the night before your conference begins.
• Find sponsors and give them complimentary tickets and an opportunity to promote their business.
• Let companies know how their donation will make a difference.
• Include travel to your conference in research grants awarded to scientists.
• Dovetail visits to the local university in conjunction with the conference — an activity that attracts funds (e.g., from drug companies).
• Fund keynote speakers and travel awards through small grants from companies.

• Negotiate with the venue's sales and catering staff before you book the conference.
• Enlist your patients for their advantage — include them (or materials showing their faces) when asking for funds.
• Tug at people's heartstrings, and always show your appreciation with personal phone calls and notes.
• Remember to use your organization's monies to promote good science.

• Give your conference a personal touch!
• Work hard, but allow time at the conference to listen and ask questions, have fun and relax, honor the patients you serve, and share the camaraderie — and for patients to share personal stories and to mingle with physicians and scientists.

In closing, Ms. Byrnes emphasized that conferences provide a unique opportunity for researchers, clinicians, benefactors, and patients and families to unite in the pursuit of a common goal: to understand and conquer a disease. She provided sample materials developed for the LAM Foundation Research Conference scheduled for April 2003, as well as a completed R13 grant application.

Dr. Robinson commented on the peer review process for conference grants (R13s) and described critical components of successful grant applications. PIOs can submit applications to the NIH for funding to support scientific conferences. The same study sections that review applications for research project grants applications provide initial review of conference grant applications, and the study sections recommendations are forwarded to an IC's advisory council or board for second-level review. The NHLBI funds conference grants at a minimum of $10,000, and multiyear funding is available. Because the review process can take 6 or more months, potential applicants must plan ahead; the NIH never provides R13 funds after a conference has taken place.

Dr. Robinson noted later during discussion that the R13 is designed strictly for the exchange of scientific information among physicians and scientists and that inclusion of patients is unusual. He also noted that participants at these meetings do not receive Continuing Medical Education (CME) credit.

Conference grant applications should be well thought-out, carefully developed, and detailed. Because study sections focus on research, applicants should describe their conference (i.e., its objectives, goals) in relation to research needs and the potential impact of this research (and the conference) on health and disease.

Critical components of a successful application are listed below.

Principal Investigator. Select and designate a principal investigator for the conference grant application who is an established senior investigator, well funded, and engaged in high-quality research.

Approach. Clearly state the specific goals and objectives for the conference. Describe the organization and format for the meeting (e.g., a mix of presentations and breakout sessions), and present a workable and effective plan for disseminating the outcomes of the meeting (e.g., publications in scientific journals, a report on the organization's Web site).

Environment of the Meeting. Locate the conference centrally so that a wide variety of individuals can attend easily. Select a conference model (e.g., Gordon conferences and Keystone conferences) that is well known by study section members. The Keystone model may be preferable because of its openness and inclusion of both students and investigators.

Budget. Explain and justify every cent requested. For example, for travel funds, specify who the travelers will be (e.g., invited speakers, graduate students), why they are selected, and where and when they will be traveling.

Special Groups. Clearly indicate that you have considered and made a special effort to include women, minorities, and persons with disabilities. Document your outreach to these groups in the application and demonstrate that you have taken initiative to obtain a broad and reasonable representation of speakers. Expressly state that the conference site is accessible for all individuals.

"Icing on the Cake." Additional details can strengthen your application. For example, list the members of the organizing committee and their affiliations, and elaborate on the potential public health impact of the conference (e.g., new research ideas).

Ms. Stevens reflected on the beginnings of NSA in 1989 to highlight ways that PIOs can open doors and create opportunity, including:

Build Relationships. Involve physicians in your effort, focus on education and research, define your goals for fundraising, seek media attention, create a library of information and a newsletter.

Find Partnerships. Identify related interest groups, encourage them to partner in joint efforts (e.g., fundraising, workshops, asking and offering physicians to speak locally).

Persevere. Follow up on referrals, encourage letters of support, and solicit funds to build relationships. Explore all avenues. Finding allies is a trial-and-error process.

Explore Others' Motivations. Identify individuals who are willing to give their time freely. Make sure that offers of assistance are sincere. Don't be afraid to say "no" to people who do not have your group's best interest in mind.

Protect Your Organization. Be aware that good intentions may introduce unexpected problems (e.g., tax issues) that could challenge your charitable status.

Establish Guidelines to Eliminate Potential Conflict. Assign specific and realistic duties to individuals to accomplish within a defined time frame.

Understand the Political Influences. Be careful of others' hidden agendas, get all the facts, and be realistic about the time needed for new drug approvals.

Continue to Learn. Understand that experience is, in fact, the best teacher.

Ms. Stevens shared some lessons from her experience at NSA: Value relationships, straighten out your priorities, become less materialistic, postpone less, be kind, say "I love you" more often, be strong and courageous, take less for granted, be more aware of gifts and blessings, and don't avoid risk — it is important, and vulnerability has value.

Dr. Beebe encouraged PIOs interested in organizing a conference, workshop, or scientific meeting to contact NHLBI staff. She emphasized three points regarding NIH conference grants (R13s).

Start Early. NIH should receive your application at least 6 months before the date of your conference, and preferably almost 1 year before, to allow sufficient time for review.

Submit a Letter of Intent. Six weeks before you submit your application, send the NHLBI a letter stating your intent to do so; that way, staff can anticipate your application and discuss with you whether it is most appropriately assigned to the NHLBI or another IC.

Meet Receipt Deadlines. The NHLBI has three receipt dates each year for applications: February 1, June 1, and October 1.

The NIH application form PHS 398 for grants is available at www.grants1.nih.gov/grants/guide/notice-files/not98-151.html.
To contact Dr. Beebe, call 301-435-0160 or e-mail BeebeD@nhlbi.nih.gov.
To contact Dr. Robinson, call 301-435-0545 or e-mail RobinsoD@nhlbi.nih.gov.

The participants focused on the role of conferences in enhancing the interaction of patients and families with scientists and physicians. They shared their experiences in organizing conferences that include, for example, plenary sessions for the basic sciences, clinical sciences, and patients, as well as concurrent sessions designed separately for scientists and patients (i.e., consumers).

The participants strongly agreed that both patients and physicians should be included in scientific conferences. Such conferences:

• Enhance dissemination of up-to-date information to patients.
• Educate both scientists and patients about each other's perspectives and needs.
• Promote trust among patients of physicians.

The participants also noted some concerns that PIOs need to address when organizing conferences. For example:

• Some patients may be frustrated because they do not understand the science that is presented.
• Some patients may be in denial or angry about their disease and the lack of a cure.
• Some patients or families may learn some unpleasant truths about their disease.
• Some physicians may be uncomfortable about sharing information and asking questions when patients are present.

Ethical issues arising from patient and physician concerns need to be considered. PIOs will want to organize their conferences to be as supportive as possible for all attendees, while promoting the open sharing of information.

The PIOs need to have respect for and be respectful of different patients' interests — for example, some patients do not want to know everything about their condition, whereas others want to know everything but cannot cope with what they hear — and find ways to communicate accurate information appropriately. For example, PIOs could:

• Make a videotape of information available to all who register for the conference.
• Make an audiotape of the full conference proceedings available.
• Include a "recommended reading" list on the PIO's Web site.

The participants emphasized that the PIO role is to support patients and families and to communicate information sensitively and in lay terms. PIOs have a responsibility to disseminate information from conferences to their patients and the general public. They are a bridge between scientists and physicians and patients and the public, and they should facilitate dialogue between these groups in every way possible.

• Include in-depth scientific presentations that patients can attend.
• Invite patients to hear short presentations from health care providers.
• Hold concurrent sessions for patients and scientists, rather than integrated sessions.
• Include an education segment about communicating information to patients.
• Organize roundtables that include PIOs and researchers at large conferences, for in-depth discussions. (A good model is the ATS–Public Advisory Roundtable Symposium held in conjunction with this meeting and with ATS's annual meetings.)
• Include posters for PIOs and patients, for presentation of their individual stories.
• Open meeting exhibit halls to all attendees and/or designate a "consumer day" for patients in the local community to visit exhibits and learn about treatments available from pharmaceutical companies.
• Emphasize opportunities for networking (e.g., during a fundraising event, lunch) so that patients can interact with physicians and researchers.
• Extend the time for questions and answers.
• Convene mini-support groups for patients and family members of various age groups several times during the conference.
• Raise funds to support "scholarships" for patients to enable them to attend the conference.

The participants emphasized that PIOs can learn from each other's experiences and should work together to develop "tools" (e.g., types of informational materials) for their constituencies. Dr. Hannah Hedrick, Vice President, National Emphysema/COPD Association, Hawaii, passed around a copy of the Self-Help Group Sourcebook — Your Guide to Community and Online Support Groups (seventh ed. Compiled and edited by Barbara J. White and Edward J. Madara. Published by the American Self-Help Group Clearinghouse, Saint Clare's Health Services, Denville, New Jersey). The Sourcebook includes chapters such as "How to Start a Community Self-Help Group" and "How to Find and Form an Online Support Group," as well as a list of self-help groups, with a description and contact information for each group. The guide is available online at www.mentalhelp.net/selfhelp.

• Dr. Hedrick encouraged all PIOs to become part of the self-help group network. She invited the PIOs to contact her to be added to a online list of groups. To contact Dr. Hedrick, call 808-968-7013 or e-mail Lornanumber1@aol.com.
• Dr. Hedrick also invited the PIOs to contribute sample materials for a "toolkit" she is developing for support-group leaders.
• Ms. Stevens invited the PIOs to call her at 1-800-6-NEUTRO to exchange additional ideas and comments about conferences.