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July 23, 2003, Summary

Scientific Progress/Community Outreach Working Group

Members Present

James Battey (NIDCD, Chair), Tony Beck (NCRR), Arlene Chiu (NINDS), Ida Chow (Society for Developmental Biology), Howard Garrison (FASEB), Celia Hooper (OD/OIR), Tim Leshan (NHGRI), Stacie Propst (Research America), John Thomas (NHLBI), Bonnie Van Dorn (Association of Science-Technology Centers).

Other Attendees

Patricia Blessing (NIDCD), Laura Cole (NIDCD), Charles Goldthwaite (science writer), Elliot Grant (NIDCD), Tom Johnson (OD/OSPP), Lisa Montney, (HHS/OS/ELP, Don Ralbousky (OD/OCPL), Anne White-Olson (NIDCD), Baldwin Wong (NIDCD).

Welcome and Charge to the Group

Dr. James Battey welcomed participants to the meeting of the Stem Cell Working Group on Scientific Progress and Community Outreach and thanked them for their expertise and willingness to share their thoughts on such relevant topics. He noted that there is confusion in the greater community regarding the definitions, capabilities, and types of stem cells (SCs) currently used in research. Moreover, there is much misinformation about human embryonic stem cell (hESC) research and what types of SC research the federal government is allowed to support. As a result, the public's perception of SC research is influenced by a plethora of factors, many of which are not informed by the current state of SC research. As such, informing various audiences about the state of current stem cell research is a crucial factor in dispelling myths and promoting new research.

Dr. Battey told participants that the NIH seeks their advice and suggestions for improving the methods of communication between the NIH and the myriad parties who express interest in SC research (e.g., researchers, the public, educators, legislators). He noted that the goal of the NIH Stem Cell Task Force is to lower barriers that hamper research, thereby moving the field forward. To that end, he encouraged participants to brainstorm and discuss issues frankly and openly. He noted that the goals of the Working Group are to:

  • Track research progress reported in publications, scientific meetings, and anticipate the needs for updates
  • Discuss the avenues for reporting research breakthroughs most effectively
  • Discuss outreach to professional and legislative groups
  • Evaluate scientific communication needs
  • Identify key professional research societies and engage them in dialogue to catalyze stem cell research activities

Dr. Battey briefly reiterated the current "portfolio" of NIH outreach strategies with respect to SC research, including:

  • Members from the NIH Stem Cell Task Force present information on Federal Funding policies in hESC research at scientific meetings, universities and medical schools.
  • NIH maintains a Stem Cell Web site (stemcells.nih.gov) to coordinate hESC research information at the NIH and to help interested parties locate information specific to SC research within the many NIH Web sites. The site consistently ranks within the "Top Ten" NIH Web sites in terms of number of "hits" per month.
  • NIH staff members exhibit at professional and scientific meetings to foster awareness of the NIH stem cell Web site and answer questions about funding opportunities, NIH stem cell activities, and other issues. NIH recently exhibited at the first annual meeting of the International Society for Stem Cell Research. Plans are underway to attend Neuroscience, ASCB, FASEB, and other major scientific meetings.
  • In June 2003, NIH sponsored a one-day symposium to allow NIH-supported scientists who use hESCs in their research grants to highlight their science. Over 500 people registered for the symposium.
  • NIH officials conduct interviews with members of the press and with writers of scientific journals.

Following these introductory remarks, participants briefly introduced themselves and shared their interest on this topic. Dr. Battey then opened the floor for a flowing discussion of relevant issues. Many suggestions were forwarded, and pertinent comments are captured in this report and grouped thematically where possible.

Online Communications

Specific Suggestions for the NIH

  • Request that organizations with interest in the SC community (e.g., FASEB, Research America) link to the NIH Stem Cell Information Web site on their Web sites
  • Make the NIH SC Information Web site link appear at the forefront of the list of links retrieved using popular search engines such as Yahoo! and Google
  • Consider using other keywords, such as "NIH stem cells," for search engine retrievals
  • Consider adding a link to an engaging but brief "stem cell essentials" document (1 page with bullets and visuals)
  • Link to the online stem cell information at the Office of Science Policy/OD
  • Ensure that the site is linked for all parties who are oriented toward specific diseases that may use SC research (e.g., diabetes, cardiovascular disease)

General Discussion

Participants noted that the current NIH Stem Cell Task Force Web site targets a limited audience of professionals. The Web site should therefore be reconfigured slightly, perhaps through an entrance portal, for both professional and lay audiences. One participant suggested adding a link for lay audiences entitled, "Are you confused about stem cells?" that would connect to a page with animation, games, or other visual tools. Such a resource would be helpful for high school teachers, science museum staff, and other educators who often have the task of conveying stem cell information to lay audiences. In addition, this page could provide information for relevant funding for pre-college educators, such as the Science Education Partnership Awards (SEPA) sponsored by the National Center for Research Resources.

Respondents also discussed using the Web site as a portal to disseminate comprehensive training/funding information for investigators who wish to use SCs in their research. It was suggested that researchers may be unaware of the spectrum of current NIH-sponsored options (e.g., T-15 short term training courses, administrative supplements, RFAs responsive to SC research, P-20 exploratory center grants, R-21 high-risk research awards, and R-24 infrastructure awards). One respondent proposed linking the Web site to those of private groups that fund opportunities in research. A brief discussion ensued regarding whether such linking would imply that the NIH supports non-sanctioned research, and participants suggested that a disclaimer could accompany the link.

It was also noted that the NIH should request that all other relevant scientific societies add a link for the Stem Cell Task Force Web site to their respective Web sites. To facilitate this process, it was suggested that the NIH provide these societies with relevant background material, such as information on current NIH stem cell resources and opportunities, symposia, and policy issues. One respondent commented that the NIH must cast a wide net when considering possible sources for online communication. Visionary young investigators whose research may incorporate stem cells currently work within a plethora of disciplines.

The NIH Primer on Stem Cells

Specific Suggestions for the NIH

  • Add diagrams to the primer
  • Coordinate diagrams in the primer with those featured online
  • Shorten the current "short version" of the primer
  • Incorporate the most up-to-date knowledge about each available cell line, using information from the June 2003 NIH Stem Cell Symposium
  • Create a list serv or other update module that will alert subscribers of changes

General Discussion

One participant noted that accuracy and completeness of the primer is especially important today, as many people have misconceptions about the very definition of stem cells. The term "stem cell" has become loosely applied to describe a variety of related cells, often confusing all audiences except those directly involved in the research. Differences between adult and embryonic stem cells must be clearly delineated. As these definitions become agreed upon through several upcoming international meetings, the NIH must incorporate these definitions into resources such as the primer.

Outreach through Meetings and Personal Contact

Specific Suggestions for the NIH

  • Invite Congressional staffers to NIH campus in the spring of each year and provide them with updates about current advances in SC research
  • Conduct briefings on Capitol Hill in conjunction with compelling research breakthroughs
  • Engage organizations such as FASEB with vested interest to help select relevant research and researchers for briefings and other public outreach
  • Consider separate scientific and journalistic conferences on topics such as "The Differences between Adult and Embryonic SCs" using a mechanism similar to the Banbury Conferences at Cold Spring Harbor
  • Establish an NIH "Speakers Bureau" to disseminate SC-related information
  • Engage the expertise of the science museum community (via the Association of Science-Technology Centers (ASTC)) to convene conferences for the public
  • Designate a staff member to speak about SCs at the 2003 ASTC meeting (8–11 November, St. Paul, MN)
  • Promote internships and summer opportunities in the eight NIH labs that currently use human ES cells
  • Sponsor a component on SC research at the Fall 2003 NIH Research Festival. Prepare a one-page handout on NIH SC opportunities and activities (e.g., grants, the NIH Stem Cell Task Force, upcoming symposia, links to online resources) that can be distributed at professional meetings, briefings, press conferences, and interviews with journalists

Discussion

One respondent commented that the public may be reached through the science museum community, which can communicate science to a large and diverse audience (e.g., the current Smithsonian traveling exhibit, "GENOME: The Secret of How Life Works," sponsored by Pfizer).

Another participant commented on the need for a segmented communication plan for Congress and the public. Such a strategy should include one-page descriptions of research and/or relevant issues for easy distribution and convenient posting in PDF format on the Web site.

Outreach through Television, Video and Radio

Specific Suggestions for the NIH

  • Create a panel format-based show, such as the PBS show, "Our Genes/Our Choices," sponsored by the NHGRI
  • Engage science museums and centers that have agreements with local cable affiliates to broadcast material immediately after embargo periods have expired and larger news organizations, such as CNN, have broadcast breaking stories
  • Work with FASEB to create an adaptable toolkit that features DVDs for professional and lay audiences, videos suitable for high school settings, and a 3–5 minute educational video for science centers
  • Produce evening segments for broadcast on NPR

Discussion

One respondent inquired about the feasibility of producing a documentary on stem cells for PBS or the Discovery Channel. Although feasible, it was noted that such an endeavor requires a great input of manpower and resources. "Our Genes/Our Choices," which was based on a moderated panel format, requires less research. However, such a show is geared toward the PBS audience, which is a relatively small subset of the larger audience that NIH aims for when communicating about stem cell research.

This observation opened a discussion about the demographics of the target audience for such programs. One participant suggested initially targeting the science audience to clear confusion regarding the lexicon for stem cells. Another respondent noted that the advocacy community often plays a major role in shaping the way that certain terms and concepts are accepted by the public. However, it was noted that the public is capable of understanding concepts and discerning between terms, provided that an adequate and accurate description is provided.

It was suggested that the FASEB is willing to construct a toolkit and listserv that would be tailored to the advocacy audience, although it would be adaptable for many other audiences. Many resources that feature explanations of stem cells and research can be used for this toolkit, including the current NIH stem cell slide shows, the stem cell slide set available through the FASEB Web site, slides used by researchers, and other videos and movies created by researchers that are currently used as teaching tools. The key feature of such a toolkit is its adaptability to different audiences. However, it was noted that the toolkit should be directed only toward current SC audiences rather than potential future audiences, as policy decisions will continue to shape future audiences.

It was also suggested that the NIH could work with leading science centers and museums that currently participate in embargo agreements with news affiliates. Through embargo agreements, science centers are forewarned of upcoming news events. Once the news event is broadcast via an outlet such as CNN, the science centers may broadcast their own programs on the subject. Although these programs traditionally reach a limited audience, they are topically relevant and do not require much preparation time. Similar agreements between science centers and PBS allow local adaptation of related programs immediately following national broadcast of a show such as Nova.

Conclusion

Dr. Battey thanked participants for their time and enthusiasm, noting that many useful and creative ideas were suggested at the meeting. The meeting was then adjourned.


If you have questions about the Task Force, please contact:

Science Policy and Planning Branch
National Institute on Deafness
and Other Communication Disorders, NIH
Bethesda, MD 20892
Phone: (301) 402-2313
Fax: (301) 402-2265
E-mail: stemcell@mail.nih.gov