Public Private Partnerships 

Appendix J
National Children’s Study Assembly Meeting
Breakout Session Summary: Public Private Partnerships
December 17, 2003
Sheraton Atlanta Hotel
Atlanta, GA

Facilitators:
Marion J. Balsam, M.D., NICHD, NIH, DHHS
Lisa Kaeser, J.D., NICHD, NIH, DHHS
Amy L. McGuire, Foundation for National Institutes of Health, NIH, DHHS

Dr. Balsam noted three important categories that should be considered as potential public private partnerships:

• Partnerships for adjunct studies.
• Recruitment and retention. The National Children’s Study needs participants to commit to the Study and remain committed for 21+ years. Study planners are considering the use of material incentives and ethical issues needing resolution.
• Media. When it is time to enroll participants, the Study needs to get the word out, by such avenues as networking, television, magazines, and radio. Charismatic media personalities could help with promotion. Some organizations may offer goodwill funding to support media efforts. Private partnerships could support media events and/or conferences at local Study sites.

Ms. Kaeser discussed the types of public and private support necessary to the success of the Study:

• Professional societies, both research and practice oriented, that have a stake in seeing that the research is conducted well
• Consumers/nonprofit organizations that have a strong interest in the findings, which may benefit children and their families nationwide
• Community representatives and state and local health officials.

She also described what efforts have taken place to increase support for the Study:

• NICHD has sought and received input from key groups during development of the Study.
• Numerous letters of support have been sent by outside groups to the White House and Congress.
• NICHD, on request, has conducted briefings for Capitol Hill staff and research advocacy groups.

Ms. McGuire addressed the Foundation for the National Institutes of Health and its role with the National Children’s Study.

Discussion

The following ideas were generated during the discussion:

• Some not-for-profit organizations are unaware of available opportunities to interface with the government about specific studies and their organizations. For the National Children’s Study, the Study Assembly is specifically geared to facilitate such connections. Organizations can interface with Study personnel to share ideas and to initiate discussion about potential support of the Study, such as by partnerships, and to provide input on the scientific merit and need for some of the proposed hypotheses.
• Initial data will be available within a few years of enrollment. The Study is primarily an observational epidemiologic study, as opposed to an interventional study.
• Planning efforts have been funded by the specific organizations (NICHD, EPA, CDC, NIEHS). However, for the actual study to begin, funding must be made available.
• The participants agreed that incentives/gifts should be provided to the participants. The Study needs to define roles for partners and develop strategies for their participation. The Study is working with the Foundation for NIH on this approach. Study participants should be "rewarded" at various junctures throughout the Study.
• A strong PR effort will be necessary, so that potential participants can understand the importance of participation in this Study.
• Study planners need to and have been interfacing with appropriate people in an effort to obtain funding for the Study. Participants discussed the need for collaboration among the government organizations and the need to expand the current coalition of national research advocacy groups now in support of the Study. The CDC coalition is a model.
• In view of the fact that most of the study participants will be relatively healthy, it was suggested that various possible sorts of incentives, including small periodic gifts, age-appropriate tickets to ball games or amusement parks, gift certificates, and even college scholarship funds (to be raised by a nonprofit organization) be used. The Study needs to ascertain what is a reasonable but not "undue" inducement.
• Participants were enthusiastic about engaging a celebrity spokesperson to help get the word out, particularly prior to enrollment. The Surgeon General might be helpful in recruiting celebrities. Spokespersons selected should appeal to the then current group of participants, the ages of which will change over time.
• Participating providers could be given an office plaque for display. HMOs might be asked to offer premium deductions for families who participate in the Study.
• A logo for "Friends of the National Children’s Study" could be developed. Other suggestions were to consider using mascots and the Ad Council for public service announcements.
• There was discussion about loss of participants over time and efforts needed to retain people in the Study. A Web site and/or a newsletter for parents were suggested to help build "commonality," a sense of being part of a bigger effort. Some parents, whose children may have a particular disease or disorder, may be interested in helping from altruistic motives so that a similar situation doesn’t happen to other families, or to help future generations of their own families.
• Community organizations were suggested again as potential partners, such as Kiwanis, Rotary clubs, and faith-based organizations. It was suggested that a partnership kit could be developed, including:
  • Introductory video
  • Permission to use the Study logo to designate an "official partner," including for products
  • Special certificates for participating physicians and nurses to display
• Manufacturers of products could also display logo-such as air sensors, ankle bracelets, etc. It was noted that name recognition is critical.

The attendees were thanked for their participation and for their many good ideas generated during the discussion. These ideas will be taken into account in the planning of the National Children’s Study.

In Attendance:

Anita Boles, M.P.A., Healthy Mothers, Healthy Babies Coalition, Inc.
Lyle B. Dennis, Jeffrey Modell Foundation, Cooley’s Anemia Foundation
Dorr Dearborn, M.D., Ph.D., Rainbow Babies and Children’s Hospital
Lawrence King, B.S.M.T., DEBLAR & Associates
Michael Lee, Foundation for National Institutes of Health, NIH, DHHS
Judy Meehan, B.S., Healthy Mothers, Healthy Babies Coalition, Inc.
Charles Pucie, Foundation for National Institutes of Health, NIH, DHHS
Rick A. Rader, M.D., Exceptional Parent Magazine
Lee Salamone, American Chemistry Council
Wendy Sanhai, Foundation for National Institutes of Health, NIH, DHHS
Amy Spangler, U.S. Breastfeeding Committee
Julie Staiano, Foundation for National Institutes of Health, NIH, DHHS
Diana Woods, Aspen Systems Corporation
Representative of March of Dimes
Representative of RTI International