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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

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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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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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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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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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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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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 external link

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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 external link.

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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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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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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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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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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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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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.

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Last Updated 3/13/01

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