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Second Annual Public Interest Organization Meeting
January 31, 2001 - Rockville, Maryland
Summary Report
Overview
Activities Addressing Congenital Heart Disease Research
- The Children's Heart Foundation
- NHLBI Support of Research on Congenital Heart Disease
National Center on Minority Health and Health Disparities and the NHLBI
My Blood, Your Blood: A Model for Educating the Next Generation
Online Information Resources
Breakout Sessions: Reports
- Supporting Research
- Getting the Message Out
- Participating in Clinical Research
- Critiquing the NHLBI Express
Recommended Actions
Conclusion
[Skip to Overview]
Summary Report
The National Heart, Lung, and Blood Institute (NHLBI) convened its second annual public
interest organization (PIO) meeting to encourage and promote public input and involvement
in Institute activities. Approximately 100 individuals participated in the 1-day meeting.
They included representatives from about 50 public interest organizations, as well as from
universities, professional societies, the NHLBI, and the National Heart, Lung, and Blood
Advisory Council. The agenda and format for the meeting were developed in response to
recommendations made by PIO representatives at the first meeting, held February 9, 2000, in Bethesda, Maryland.
The agenda included several presentations, four breakout sessions, and a demonstration of online information resources from the National Library of Medicine. Two scientific presentations focused on congenital heart disease research as an example of how the NHLBI and a PIO address a common goal. Participants also heard about the new National Center on Minority Health and Health Disparities at the National Institutes of Health (NIH) and viewed a model program for educating young people about blood and blood donation. Participants in the simultaneous breakout sessions discussed practical steps that the NHLBI, the PIOs, and their
constituents could take to
- support medical research,
- communicate the importance of medical research,
- promote participation in clinical research, and
- refine NHLBI's new public information Web site, the NHLBI Express.
The format of the meeting facilitated interactive, small-group, roundtable discussions for the PIOs to explore potential areas of collaboration among themselves and with the
NHLBI. This report summarizes the presentations, discussions, and recommendations from
the meeting.
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[Skip to Congenital Heart Disease...]
Overview
Dr. Claude Lenfant, Director, NHLBI, welcomed everyone to the meeting. He
commented that the first meeting, from the NHLBI's perspective, was very successful
in communicating and sharing the different perspectives of the NHLBI and the PIOs. He
drew a distinction between the NHLBI's role – to support a broad research portfolio – and the PIOs' roles – to reflect the specific disease interests of their constituents. Dr. Lenfant emphasized that the NHLBI is especially interested in communicating the outcomes of biomedical research to patients, practitioners, and the public; he encouraged the PIOs to assist in this endeavor. Noting that the National Heart,
Lung, and Blood Advisory Council also serves as a bridge to the public, Dr.
Lenfant invited the PIO representatives to attend the Council's meeting on the
following day. He introduced a number of Council members attending the PIO meeting and
encouraged the PIO representatives to speak with these individuals during the meeting.
Dr. Lenfant noted that the NHLBI's responses to recommendations from the first PIO
meeting included launching the NHLBI Express and the FYI from the NHLBI
a collection of news articles and research information. He encouraged the
representatives to critique these resources and to suggest ways of enhancing the
usefulness of future meetings. Several computers were available for the participants
to explore the NHLBI Express and other resources available from the NIH.
Activities Addressing Congenital Heart Disease Research
Dr. Lenfant introduced two presentations addressing private and
public support for research on congenital heart disease. He noted that
medical issues in the early years of life and in the context of the family
are important research concerns for the NHLBI and public health in general.
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[Skip to NHLBI Support...]
The Future of Private Funding for Congenital Heart Disease:
How We Maximize the Return on Our Investment
The Children's Heart Foundation
Ms. Betsy Peterson, Executive Director/Founder, the Children's Heart
Foundation (CHF), Chicago, Illinois, showed a brief video on the CHF and
described its purpose, organization, and research support. Established as a
nonprofit foundation in 1976, the CHF is the only private U.S. organization
dedicated solely to supporting research on the causes, treatment, and prevention of congenital heart disease.
Congenital heart disease affects 1 of 115 newborns in the United States. Approximately
2,500 infants with congenital heart disease die within the first year of life,
and an estimated 960,000 children and adults presently live with the effects
of congenital heart disease. In most cases, its cause is unknown.
Nevertheless, clinical researchers made major strides during the 1970s and 1980s
to improve treatment. Currently, about 80 percent of infants born with heart defects
survive to adulthood. Basic and clinical research continue to advance, largely
because of the NHLBI's support of Specialized Centers of Research (SCORs) in
cardiac development and its establishment,
in May 2000, of the Pediatric Heart Disease Clinical Research Network
The CHF's goals are to accelerate the pace of research,
enhance public awareness of congenital heart disease, and improve the
quality of life and longevity of the patients. Each year, through
donations and gifts (e.g., memorial, estate, corporate, foundation), the
CHF has been able to support 2-3 research projects chosen from the 40-50
grant proposals that are received and reviewed by its international medical
advisory board. To increase its research funds, the CHF is developing an
internet-based national campaign and a multi-institutional
partnership for pooling resources to support larger research projects.
The CHF maximizes the return on its investment in research by providing
seed money for research at the beginning stages as well as by supporting
clinical research that has an immediate impact. Support for new research
programs has a long-term effect on congenital heart disease research; it
assists grantees in securing subsequent NIH support. Since 1997, the CHF has
obtained more than $840,000 to fund 13 research projects in 11 U.S. institutions.
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[Skip to Center on Minority Health...]
Loops, Tinman, and Sonic Hedgehog:
NHLBI Support of Research on Congenital Heart Disease
Dr. Gail D. Pearson, Heart Development, Function, and Failure Scientific
Research Group Leader, NHLBI, described the Institute's past and present
support of congenital heart disease research. NHLBI support has made possible
major advances in diagnosing and treating congenital heart disease, which include development of
Gibbon's heart-lung bypass and Blalock's and others' advanced imaging techniques (e.g., phonocardiography,
echocardiography, 3-dimensional ultrasound). With these techniques,
physicians can visualize and accurately diagnose fetal heart defects in utero so that
corrections can be made soon after birth. Epidemiological studies supported by the
NHLBI (e.g., the landmark Baltimore/Washington Infant Study) suggest that
congenital heart disease may be caused by a combination of environmental and genetic
factors, and researchers are identifying possible genes that may be involved.
Research on cardiovascular development accelerated after the
NHLBI convened its 1984 Workshop on Cardiac Morphogenesis and issued
a series of Requests for Applications (RFAs). The Institute currently
supports more than 100 research grants addressing various aspects of
cardiovascular development and pediatric heart disease. In 1990, the
NHLBI initiated support for its first SCOR in cardiac development; it
currently supports 5 such SCORs at a cost of approximately $7 million a
year. In addition, the Institute is supporting development of a clinical
trials network to improve clinical care, a Task Force on Research on
Pediatric Cardiovascular Disease to shape future research directions, and an
external evaluation of the SCOR program to assess its effectiveness.
Dr. Pearson noted the extent to which the NHLBI investment in
congenital heart disease research has grown. In 1949, the Institute
issued a grant of less than $12,000 for Dr. Blalock to study congenital
heart defects. Last year, it invested approximately $64 million to
understanding the basic science, diagnosis, treatment, epidemiology, and
prevention of this disease. Future research will build on the advances of
the past, including the pre-1990 understanding of how the heart's "loops" as
it develops into a four-chamber structure; clarification of the role of a
"sonic hedgehog," or protein, that instructs cells to differentiate into a
specific organ (e.g., the heart); and identification of a gene called "tinman" that, when "knocked out" in a fruit fly, results in a fly with no heart.
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[Skip to My Blood, Your Blood...]
National Center on Minority Health and Health Disparities and the NHLBI
Dr. John Ruffin, Director, National Center on Minority Health and Health
Disparities (NCMHD), NIH, described the function and mandate of this new center,
focusing on its interaction with other NIH components including the NHLBI. The
NCMHD was established on November 22, 2000, by the Minority Health and Health
Disparities Research and Education Act of 2000 (Public Law 106-525).
The center replaces the previous NIH Office of
Research on Minority Health (ORMH), which also was headed by Dr. Ruffin.
The ORMH and NHLBI have collaborated in the Jackson Heart Study and the
establishment of cardiovascular research centers at minority institutions.
These and related model efforts have been successful in enhancing the
research capacity of minority institutions, attracting minority researchers
into cardiovascular science, increasing participation of minority populations
in clinical studies, and
stimulating partnerships between minority and majority institutions.
Dr. Ruffin emphasized that the NCMHD will continue to
coordinate and collaborate with the NHLBI and other NIH components.
It will conduct and support research and training, disseminate
research-based health information, and develop programs related to
health conditions affecting populations with health disparities. The
center will focus on all populations suffering health disparities, including
ethnic minorities, underserved groups, those with mental disabilities, men,
and women. In contrast with the ORMH, the new center has authority to award
research grants. The legislation also enables the NCMHD to establish
centers of excellence in research training, a
research endowment program, and an extramural loan repayment program.
Dr. Ruffin will chair a trans-NIH task force to establish a comprehensive
plan and budget for minority health and health disparities research. The ORMH
strategic plan will serve as the basis for the new plan. Dr. Ruffin noted that
the challenge is to obtain the appropriation necessary to support the expanded
activity. The center's fiscal year 2001 appropriation is approximately $130 million,
of which about $96 million is already committed for projects supported previously by
the ORMH. Dr. Ruffin encouraged the PIOs to peruse the legislation establishing the NCMHD, provide input on the plan, and suggest individuals who could serve on the NCMHD advisory council.
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[Skip to Online Information Resources]
My Blood, Your Blood: A Model for Education the Next Generation
Mr. Jim MacPherson, Chief Executive Officer, America's Blood Centers (ABC),
Washington, D.C., presented a new 20-minute video, entitled "My Blood, Your Blood,"
as a potential model effort that could be undertaken by groups such as PIOs, to
communicate information on health and disease. ABC comprises a community of nonprofit,
voluntary blood centers that obtain approximately one-half of the blood donations in the
United States. It has collaborated with the NHLBI for many years.
"My Blood, Your Blood" is an update of a film that was first
produced 25 years ago in Seattle. The video is available in two
versions, for elementary school children and for junior high/high school
students, and is offered in a kit that includes a learning guide for teachers.
In the elementary school version shown at the meeting, children are engagingly
introduced to a hematology laboratory and researcher, an animated red blood cell
on a skateboard, and various blood components. They learn about the body's network
of blood vessels, the circulating bloodstream, the formation of blood, the function
of blood in health and disease, and the process and need for blood donation. The video
communicates complex, factual information in a simple, entertaining manner. The overall
messages are "you can't live without blood," "blood saves lives,"
and "only people can give blood to others."
Mr. MacPherson noted that ABC is seeking endorsements of the video and partnerships to
disseminate the video to schools and other entities. ABC has developed a 2-year plan
for community implementation and national marketing of the video. The participants at
the meeting enthusiastically applauded the effort and the presentation. Additional
details can be obtained by calling 1-888-USBLOOD or visiting
www.MyBloodYourBlood.org 
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[Skip to Breakout Sessions]
Online Information Resources
Dr. Alexa T. McCray, Director, Lister Hill National Center for Biomedical
Communications, National Library of Medicine (NLM), NIH, presented a
demonstration of the information resources available through the NLM.
She noted that the NLM is the world's largest biomedical library and that its
resources are free online and available worldwide. Interacting with other
NIH components, the NLM continues to refine and enhance databases for the many
audiences it serves. Dr. McCray instructively walked participants through
three "demos" of databases that may be of particular interest to PIOs and
their constituents: MEDLINE, through PubMed; MEDLINEplus; and ClinicalTrials.gov. These sites can be accessed through the
NLM home page, which
includes information about NLM's services and programs, links to specialized
servers, and multimedia features such as the Visible Human Project and Profiles
in Science. A handout describing these resources was provided.
MEDLINE is a database of more than 10 million references to articles
published in 4,300 biomedical journals. By accessing this database through PubMed,
individuals can do simple searches (e.g., of "leukemia") to obtain citations,
abstracts, and, increasingly, links to publishers or libraries that provide full
texts of articles. By limiting (refining) their queries, individuals can accomplish
sophisticated searches very quickly. Users can keep an electronic list of their searches,
save or print selected articles, identify all the journals searched for a subject, and see the hierarchy of terms used to generate the results.
MEDLINEplus contains consumer health information
on a growing number (currently, about 430) of diseases, conditions, and wellness
issues. The NLM is constantly augmenting and refining this site. For each topic
(e.g., high blood pressure), the site provides a table of contents; information
on diagnosis, prevention, and treatment; accurate, up-to-date scientific information
presented in lay language; dictionaries of medical terms; links to health professionals,
organizations, and libraries; and links to other NIH components. Dr. McCray encouraged
PIO participants who would like to link their Web sites to MEDLINEplus to review the "MEDLINEplus Selection Guidelines"; she also suggested that organizations consider having their sites certified by the European organization Health on the Net .
ClinicalTrials.gov is a database of ongoing or recently completed
clinical trials at the NIH and elsewhere. Initiated just 1 year ago, the database
currently covers about 5,200 trials in approximately 53,000 locations, including about
4,000 foreign sites. A pilot study is under way to include privately funded clinical
trials in the database. Dr. McCray noted that NIH's goal is to make this site as complete
and simple to use as possible for patients and families. Individuals can search specific
conditions (e.g., by "arrhythmia") to obtain a list of studies and information about each
study (e.g., sponsor, status, purpose, phase, eligibility criteria, location, contact) and
can link directly to relevant NIH components, MEDLINEplus or its topics, and other consumer health information. Individuals also can search by sponsor, location, or treatment. The site recognizes, and corrects for, the misspelling of medical terms. For
completed studies, ClinicalTrials.gov provides a summary of the results and
links to the peer-reviewed articles reporting the results.
Dr. McCray emphasized that the NLM information resources are updated daily and are
refined and enhanced constantly to maintain high quality and meet user needs. She
noted that all the sites are linked, and she invited the participants to begin by
exploring a topic on one site. The search possibilities are presented clearly on the
home page for each site.
In discussion, the participants suggested that MEDLINEplus include a
capability to search for specific drugs based on disease and that
ClinicalTrials.gov include the capability to search by geographic region. It was suggested that the PIOs could help encourage private sponsors of clinical trials (e.g., pharmaceutical companies) to participate in the clinical trials database.
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[Skip to Supporting Research]
BREAKOUT SESSIONS: REPORTS
The participants divided into four breakout groups that met simultaneously to address
two topics related to research (supporting research,
and participating in clinical research)
and two topics related to information dissemination (getting the message out,
and critiquing the NHLBI Express). Each group was cochaired by a current or former member of the
National Heart, Lung, and Blood Advisory Council and a senior NHLBI staff member. Dr.
Lenfant asked the groups to identify practical steps that could be taken by the
NHLBI and PIOs and their constituents in the four areas to enhance public input and
involvement. He encouraged open discussions and full participation. The groups met for
almost 3 hours, in two sessions, and then reported their findings in a plenary session.
The reports, summarized below, conveyed several general themes:
The NHLBI and PIOs have been successful, separately and
differently, in supporting research, getting the message out,
participating in clinical research, and developing public
information resources. By coordinating efforts, the NHLBI and PIOs
could enhance complementary efforts,
add value, and create new possibilities for effective action.
The NHLBI and PIOs could strengthen support for medical research by
combining approaches, collaborating on specific efforts, and partnering to reach
out to the public and Congress. Joint efforts (e.g., conferences, shared
research funding) are particularly needed to foster research on less
well-known diseases and conditions and to support young investigators.
The NHLBI and PIOs could stimulate clinical research by collaborating in
efforts to increase public and patient awareness of the importance of clinical research
and to develop and maintain patient databases and registries.
The PIOs could serve as important and effective bridges to
practitioners, communities, and the public (including the Congress) if supported
by information and knowledge developed by the NHLBI.
The PIOs could help one another most by organizing consortia
or "umbrella" organizations to serve as one "voice" in advocating for increased
research funds and communicating with the public and Congress.
The NHLBI Express Web pages and the FYI from the NHLBI news
articles are necessary, timely, effective, and high-quality efforts to enhance public
interest in, and awareness of, NHLBI activities.
The annual NHLBI-PIO meeting is a very positive forum for sharing ideas
and exchanging information. It should be continued.
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[Skip to Getting the Message Out]
Supporting Research
The breakout group addressed four questions:
How can PIOs fund grants, fellowships, and other research programs? The group noted that PIOs support research effectively by providing seed money to young researchers and partnering with other groups (e.g., the NHLBI, industry).
PIOs develop funds for research by
- sponsoring galas, annual appeals, and planned givings,
- raising funds from families,
- establishing alliances (e.g., with for-profit groups),
- obtaining matching funds from other organizations,
- seeking grant money directly from pharmaceutical companies, and
- building an infrastructure that attracts matching funds and fellowship grants from foundations.
How can the NHLBI help PIOs advance research?
The NHLBI could help organizations advance research by
- informing PIOs of other groups with similar interests,
- establishing voluntary patient registries,
- supporting conference grants,
- collaborating with PIOs to support fellowships,
- sharing its list of research applicants for possible funding by PIOs,
and partnering with PIOs on specific projects, and
- focusing on the role that patients can play in educating physicians.
How can PIOs help the NHLBI advance research?
PIOs could help the NHLBI advance research by
- encouraging their constituents (patients), through lists of questions on
their Web sites, to ask physicians about particular treatment options,
- obtaining input from patients that would be useful for physicians,
- establishing and maintaining contact with the NHLBI research administrators
in their area of concern,
- collaborating with the NHLBI to identify directions for research,
- disseminating FYI from the NHLBI and NHLBI press releases,
- identifying impediments to research,
- encouraging physicians to respond to RFAs, and
- keeping constituents involved (e.g., through newsletters).
The group noted, in particular, the need for more research on factors such as stress,
diet, and exercise, which are associated with chronic conditions, and for
guidelines on living with a chronic disease and making lifestyle changes.
How can PIOs help one another advance research?
The PIOs can help one another advance research by
- obtaining and sharing research results written in lay language,
- mentoring new PIOs,
- sharing information on interesting ongoing research and on funding interests, and
- sponsoring grant-writing and mentoring workshops for young researchers.
The group strongly encouraged the establishment of "umbrella" organizations
for PIOs having related or similar problems (e.g., pulmonary hypertension,
pulmonary fibrosis) or representing rare disorders (e.g., sarcoidosis).
Umbrella organizations could advance research by developing a national network
that has "strength in numbers" to communicate key messages to the public and
Congress through "one voice," facilitate fundraising, reduce duplication of effort, and help maintain the continuity and commitment of participating groups.
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[Skip to Participating in Clinical Research]
Getting the Message Out
This breakout group addressed four questions, similar to those above:
How do PIOs raise awareness, generate support, and help
constituents? PIOs communicate with their constituents and the public in various ways, including
- press releases,
- public service announcements
- medical symposia,
- "awareness days,"
- radio and television talk shows.
Some also provide medical alert bracelets and other disease identifiers (e.g., wallet cards, "passports").
How can the NHLBI help PIOs get the message out? The NHLBI could help PIOs get the message out by
- encouraging the establishment of consortia of PIOs or disease-affinity groupings,
- facilitating access to resources and affinity groups,
- supporting additional public awareness campaigns and public service
announcements concerning different diseases,
- stimulating medical institutions to develop innovative educational approaches
(e.g., Web-based, interactive media to inform providers about disease processes),
- linking to the Healthbeat radio network from the NHLBI Express, and
- continuing to convene an annual PIO meeting.
Development of informative and appropriate bilingual materials for the diverse
U.S. population is a major challenge. The group encouraged the NHLBI
to use focus groups and other means to determine how different groups receive
and understand health information. Some groups may benefit more from visual
communications. Special efforts will be needed to develop materials for individuals
with low literacy and for rapid dissemination of information to high-risk groups.
Preliminary suggestions included
- partnering with others (e.g., NCMHD) to enhance Web-based training for
minority researchers in core facilities,
- adding a telephone translation service to the NHLBI's Web site, and
- using volunteers or joint support of a contractor to provide translation
services for the PIOs.
How can organizations help the NHLBI get the message out? The PIOs could help the NHLBI get the message out by
- providing patients' personal stories,
- disseminating NHLBI newsletters and other materials,
- facilitating contacts with various spokespersons,
- meeting with professional organizations,
- attending grand rounds at hospitals,
- creating physician resource directories,
- providing clinical databases,
- identifying celebrities to serve as spokespersons, and
- encouraging the Congress to designate national days for specific diseases.
How can PIOs help one another get the message out?
The PIOs could help one another get the message out by
- jointly advocating for research funds,
- establishing consortia for mutual problem-solving,
- supporting the organization Research! America, and
- creating interest subgroups within the National Organization of Rare Disorders.
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[Skip to Critiquing the NHLBI Express]
Participating in Clinical Research
The breakout group considered four questions concerning the facilitation
of clinical research by PIOs and the NHLBI:
How do organizations facilitate constituent participation in research?
The PIOs facilitate the participation of constituents in research by
- compiling patient registries, databases, and surveys,
- educating patients, families, and communities about the importance
of clinical research,
- using the internet, newsletters, and direct mailings to announce the
availability of clinical trials,
- increasing the number and adequacy of samples by encouraging
constituents of different races, both genders, and varying socioeconomic
levels to participate in clinical research, and
- sponsoring conferences with other organizations (e.g., NHLBI, professional societies
and associations) to increase public awareness about specific diseases and foster
enthusiasm for clinical trials.
How can the NHLBI help organizations facilitate participation in research?
The NHLBI can help PIOs facilitate participation in research by
- continuing to develop and disseminate culturally appropriate and culturally
sensitive information targeted to specific populations,
- emphasizing existing partnerships between community providers and
researchers, to encourage providers to inform their patients about clinical trials,
- providing updates on the status of clinical trials,
- publicizing the results of trials, and
- producing educational materials and "good medical stories" for
dissemination to the media through a public education campaign.
The NHLBI also could
- fund research on "orphan" diseases,
- educate insurance companies about the standards of care provided
in clinical trials to encourage reimbursement for participation in trials, and
- support the organization and maintenance of patient databases and registries.
How can organizations help the NHLBI facilitate participation in research? The PIOs can help the NHLBI facilitate participation in research by
- providing seed money to generate pilot data,
- providing access to communities and patients,
- appointing PIO liaison(s) to the NHLBI,
- fostering public relations efforts to bridge between government and communities,
- assisting in the development of research protocols,
- conducting focus groups to foster NHLBI and researchers' understanding
of the nuances of disease, and
- serving as advocates for increased funding (for the NHLBI) and
increased awareness and sensitivity by regulatory agencies, the insurance industry,
and the Congress.
How can organizations help one another facilitate participation in research? The PIOs acknowledged their constitutents' courage, commitment, and continuing efforts to assist researchers in developing and improving treatment options. The PIOs can help one another facilitate participation in clinical research by
- creating a consortium of PIOs (e.g., in congenital heart disease) to foster
the goals of each organization, act as one "voice" to advocate for increased support for
research, and serve the public's interest,
- sharing resources, and
- continuing to meet annually to share information and ideas.
The group suggested that consortia could also meet annually in conjunction with the
larger NHLBI-PIO meeting.
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[Skip to Recommended Actions]
Critiquing the NHLBI Express
This breakout group considered the following four questions:
What parts of the NHLBI Express are useful?
The group highlighted the following:
- survey of bills and pending legislation,
- health information for patients,
- quick links to other organizations with similar interests and to
information on clinical trials, and
- the NHLBI online catalog.
The PIOs applauded the site as being a useful, user-friendly,
and visually appealing resource that conveyed NHLBI activities and information
"that could be trusted."
What parts of the NHLBI Express should the NHLBI reorganize or remove? The group suggested
- removing graphics that are unrelated to the text,
- eliminating the color red, which is difficult to see,
- making the icons larger,
- improving the A-Z list for finding information (e.g., linking to a
disease included on the CDC site, rather than to the CDC home page),
- placing stronger emphasis on health promotion, and
- adding a shortcut to ongoing research (e.g., links, by disease,
to other NIH components).
What additional information should the NHLBI include on the NHLBI Express? Suggestions included adding a glossary of acronyms and terms and providing an easy way to find patient information (e.g., for physicians and patients).
How can the NHLBI improve communications with its constituents? The group strongly encouraged the NHLBI to register the NHLBI Express and the NHLBI home page with the usual search engines, listing the site primarily as information for the public and making it accessible through simple search terms (e.g.,
heart, lung, blood). Additional suggestions for the NHLBI Express included
- defining, on the first page, the NHLBI mission, the meaning of "Express," and the
audiences served (e.g., patients, researchers, physicians),
- conveying that the NHLBI is a government agency, which enhances the credibility of
the information presented,
- exchanging links with other organizations,
- providing a Spanish translation,
- adding a default system for finding information not included on the A-Z list, and
- adding an icon for the NIH/NHLBI telephone directory.
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[Skip to Conclusion]
Recommended Actions
The PIOs specifically encouraged the NHLBI to:
Establish an internet e-group or message board to foster communication among the groups. Participation would be by invitation only.
Include in next year's meeting a tour of the NHLBI facilities at the NIH and
discussion of the possibilities for sharing support of research projects.
Provide a summary of the present meeting on the Internet and in FYI from the
NHLBI and provide a press release about the meeting, which PIOs could send to
their local newspapers.
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Conclusion
Dr. Lenfant thanked the participants for the very helpful dialogue
and many good suggestions. He said that the NHLBI would plan
annual meetings with the PIOs, and he encouraged representatives
to seize and create opportunities for sharing their views formally
and informally during the year.
Please send us your feedback, comments, and questions by using the appropriate link on the page, Contact the NHLBI.
Note to users of screen readers and other assistive technologies: please report your problems here.
Last Updated 3/13/01
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