The coalition of health organizations and publishers was created in 2005 under the leadership of the American Cancer Society; the American Diabetes Association; the American Heart Association; the International Association of Scientific, Technical and Medical Publishers (STM); and the Professional Scholarly Publishing Division of the Association of American Publishers (AAP-PSP) . The National Organization for Rare Disorders and the ALS Association joined in 2006 and the Arthritis Foundation in 2007.

With the collaboration of scientific publishers worldwide, voluntary health organizations and other trusted sources post patient-oriented summaries of important peer-reviewed research on their websites and provide a free link to the original article as soon as it is published on a journal’s website. Over 700 journals are participating and hundreds of articles have been summarized and accessed by the public through patientINFORM.

Until recently, Ms. Case held the position of Publisher at the American Association for Cancer Research and she is a former Senior Vice President for Publishing at the American College of Physicians and Executive Editor of Annals of Internal Medicine. She is past president of the Council of Science Editors and of the Society for Scholarly Publishing; served on the Publications Committee of the American Heart Association; the Governing Board for Publishing of the American Chemical Society; and is currently a member of the Journal Oversight Committee of the American Medical Association.

“We are extremely pleased to find an Executive Director with such an extensive publishing background in both clinical medicine and biomedical research,” said Thomas Easley, Managing Director, Publishing, for The New England Journal of Medicine and President of patientINFORM. “Ms. Case was part of the group that founded patientINFORM, and she has experience that spans patient education and scholarly publishing.”

Ms. Case will manage the coalition from the offices of the American Association for Cancer Research (AACR). “As an organization with a mission that emphasizes research, patient education and advocacy, we are pleased to participate in patientINFORM and to help support this important collaboration,” noted Dr. Margaret Foti, AACR’s CEO.

Online Resource Allows Patients Direct Access to Latest Medical Research

WASHINGTON, D.C., Feb. 16, 2006 - The National Organization for Rare Disorders (NORD), the umbrella organization for more than 1100 rare disorder groups, and the ALS Association (ALSA) have joined the American Diabetes Association, the American Cancer Society, the American Heart Association and a group of scholarly and medical publishers as participants in patientINFORM, an effort to provide consumers quicker access to the latest medical research.

“We are very pleased to have these two distinguished organizations join our efforts,” said Peter Banks, publisher of the American Diabetes Association . “Their commitment will expand the amount of information available to help consumers improve discussions with their physicians and make informed decisions about care. ”

patientINFORM is a collaborative private sector initiative of patient health organizations, medical societies, health information professionals and medical publishers. It was created under the leadership of the American Cancer Society, the American Diabetes Association, the American Heart Association and the International Association of Scientific, Technical and Medical Publishers . Through patient INFORM, patients, their family members and other individuals can access relevant and important research articles about diseases and treatments using the Web sites of participating patient health organizations. Additional content has been developed to explain these published articles, which makes them more understandable.

By using patient INFORM , patients and their family members, or other concerned individuals, can link directly from the Web sites of the American Cancer Society , the American Diabetes Association , the American Heart Association , and soon the National Organization for Rare Disorders and the ALS Association , to the research article on the publisher's site. Each organization's Web site provides visitors with links to the full text of selected journal articles, as well as materials created by these groups to help individuals more fully understand the implications of the research. The voluntary health organizations interpret the research in ways patients can understand and apply to their own healthcare needs.

While many patient health organizations already provide comprehensive information based on the latest research, the patient INFORM model takes the unprecedented step of including the support of medical and scholarly publishers who are providing free online access to peer-reviewed medical articles available immediately upon publication.

“Patients and families in the rare disease community have a particular need to learn about their diseases. They may, of necessity, be more involved in diagnosis and treatment decisions than is normally the case,” said Mary Dunkle, NORD vice president for communications. “For more than 20 years, NORD has been providing information about rare diseases to patients and their families. Now patientINFORM will provide a platform for carrying that service to the next level.”

“As the world’s leading organization in the fight against Lou Gehrig’s disease, the ALS Association is honored to expand its service to the ALS community through our new partnership with patientINFORM.” said ALSA President and Chief Executive Officer Gary Leo. “Access to scientific research is imperative for those who have ALS and for the array of family, caregivers, legislators, researchers, health care professionals and others who need information about this devastating disease.”

In addition to the participating health organizations, patientINFORM is supported by more than 20 publishers including the American Association for the Advancement of Science; American Association for Cancer Research; American Physiological Association; American Roentgen Ray Society; American Society of Hematology; American College of Physicians (Annals of Internal Medicine); Blackwell Publishing; BMJ Publishing Group Ltd; Elsevier; The Endocrine Society, Massachusetts Medical Society (New England Journal of Medicine); Nature Publishing Group; Oxford University Press; Proceedings of the National Academy of Sciences; Society of Nuclear Medicine; Springer; Taylor and Francis; Thieme Publishing Group; John Wiley & Sons, Inc.; and Wolters Kluwer Health. Other participating and collaborative partners include the International Association of Scientific Technical and Medical Publishers, Association of American Publishers/Professional & Scholarly Publishers, HireWire Press, Cross Ref and the Welch Medical Library at Johns Hopkins University.

WASHINGTON, D.C., Feb. 16, 2006 - Representatives Paul Gillmor (R-OH) and Diana DeGette (D-CO) were joined today by leading health organizations and medical publishers to draw attention to the health literacy crisis in the U.S., as well as new methods for providing easier public access to medical information and research.

“Health literacy, or the ability of individuals to access, understand and use health-related information and services to make appropriate health decisions, is one of the most important issues facing America’s healthcare system today,” said U.S. Surgeon General Dr. Richard Carmona, in taped remarks for a health literacy briefing today hosted by Reps. Gillmor and DeGette. “All of us—government, academia, healthcare professionals, biomedical journal publishers, communities and consumers—working together can bridge the gap between what health professionals know and what patients understand, and thereby improve the health of all Americans.”

According to the Institute of Medicine Report on health literacy, 90 million people have difficulty understanding and using health information. patientINFORM, a free online resource to help educate and empower healthcare consumers with the latest research findings on certain diseases and ailments, was highlighted as an example of one collaborative effort. Participants in patientINFORM include the American Cancer Society, the American Diabetes Association, the American Heart Association, the National Organization for Rare Disorders (NORD), the ALS Association (ALSA), health information professionals and scholarly and medical publishers.

Deputy Surgeon General Dr. Ken Moritsugu said his agency is working to find the best ways to improve health literacy in America. “They include high tech information distribution methods like interactive programs and the internet to proven low-tech, high touch methods like peer-to-peer education,” he said. “patientINFORM fits nicely into the category of a high tech answer, providing people information and answers to their health related questions about disease and treatments. patientINFORM also fits into the recommendations of Healthy People 2010, which is HHS’ ‘road map’ for the nation’s health. Among the activities included to improve health literacy are building a robust health information system that provides equitable access.”

“As part of patientINFORM, health organizations are striving to eliminate the barrier of intimidation for patients when addressing medical information,” said Peter Banks, publisher, American Diabetes Association. “This resource allows patients and those closest to them to access relevant research articles regarding diseases and treatments directly through the Web sites of the American Cancer Society, the American Diabetes Association and the American Heart Association. A unique feature of the resources is the added content that helps explain the articles, making them more understandable and meaningful to consumers.”

“We are pleased to see this collaboration making so much critical information available free-of-charge to consumers over the Internet,” said Gillmor. “Through patientINFORM, patients can be better consumers of healthcare, which will lead to improvement in their health. The patient INFORM concept should be especially helpful to sprawling congressional districts such as my own in Northwest Ohio, in which patients must drive, or be driven by friends and family, long distances for basic medical education, care and services.”

“Scientific research has never been more accessible than it is today. Yet, people still do not know enough about their own health, disease and treatments," said DeGette. "The medical publishing industry has tried to address this need by making material more readily accessible. PatientINFORM is another example of this commitment. By joining with voluntary health organizations that have a long history of communicating information to consumers - they have created a new platform for disseminating information and are helping improve health literacy in America."

“The patientINFORM project is our attempt to do what we can as publishers to aid the effort to help improve health literacy in America,” said Brian Crawford, Ph.D., incoming chairman of the American Association of Publishers/Professional Scholarly Publishing Division and senior vice president of the American Chemical Society. “If we are to improve the health of all Americans, people need to better understand our health care system, the impact of disease, treatments and what we can and should do to keep ourselves healthy. patientINFORM is just one small step in this broader campaign and we are proud to be a part of the effort.”

In addition to the American Cancer Society, the American Diabetes Association, the American Heart Association, the National Organization for Rare Disorders (NORD), and the ALS Association (ALSA), patient INFORM is supported by more than 20 publishers including: the American Association for the Advancement of Science; American Association for Cancer Research; American Physiological Association; American Roentgen Ray Society; American Society of Hematology; American College of Physicians (Annals of Internal Medicine); Blackwell Publishing; BMJ Publishing Group Ltd; Elsevier; The Endocrine Society, Massachusetts Medical Society (New England Journal of Medicine); Nature Publishing Group; Oxford University Press; Proceedings of the National Academy of Sciences; Society of Nuclear Medicine; Springer; Taylor and Francis; Thieme Publishing Group; John Wiley & Sons, Inc.; and Wolters Kluwer Health. Other participating and collaborative partners include the International Association of Scientific Technical and Medical Publishers, Association of American Publishers/Professional & Scholarly Publishers, HireWire Press, Cross Ref and the Welch Medical Library at Johns Hopkins University.

Atlanta, GA, and Alexandria, VA — July 6, 2005 — Three of the nation's leading voluntary health organizations have joined a group of scholarly and medical publishers to launch a pilot program to provide patients, caregivers, and the general public direct access to medical research on some of the most serious diseases and medical conditions. The free online information resource called patientINFORM will provide consumers with the ability to read the latest original research articles published in medical and scientific journals, find assistance in interpreting the information and access additional materials on the Web sites of participating voluntary health organizations.

"We hope that connecting patients and others directly to many of the research studies that will have an impact on their treatment will be a valuable addition to the credible, reliable, and comprehensive information we and our health partners are dedicated to giving all Americans," said Harmon J. Eyre, M.D., national chief medical officer of the American Cancer Society. "For years, people have relied on our organizations to understand research findings, and we think patientINFORM will empower what we call 'expert patients' to go the next step, and use direct access to select studies to have a more productive dialogue with their physicians and make well-informed decisions about care."

In its pilot phase, patientINFORM will initially focus on cancer, diabetes, heart disease and stroke through the participation of the American Cancer Society, American Diabetes Association, and in the near future, the American Heart Association. As the resource becomes firmly established, it will expand to include other organizations in these and other areas, including psychiatric, respiratory, neuromuscular, renal, and gastrointestinal disorders, as well as infectious diseases including AIDS and rare genetic disorders.

The creation of this free online information resource has been driven by recent trends indicating that public awareness of clinical research, heightened by media coverage and fueled by the spread of broadband Internet access, has led more and more patients to go online to find the latest information about treatment options. The problem is even well-educated, knowledgeable consumers can find it difficult to fully understand and evaluate scientific findings, and make sound decisions on what they learn.

"The health literacy problem has been called a 'silent epidemic' because many patients are embarrassed or intimidated and do not seek help to understand difficult or complicated information. The result is that a crucial part of their medical care is missing, and so they put their health at risk," said Richard Kahn, Ph.D., chief scientific and medical officer of the American Diabetes Association.

Under the patientINFORM model, patients and their family members, or other concerned individuals, can go directly from the Web sites of the American Cancer Society, American Diabetes Association or American Heart Association to the research article on the publisher's site to learn more about important advances on specific diseases and treatments. Each organization's Web site will provide visitors with links to the full text of selected journal articles, as well as materials created by these groups to help these individuals more fully understand the implications of the research. As gatekeepers of the scholarly content, the voluntary health organizations will be able to interpret the research in ways patients can understand and apply to their own healthcare needs.

While many patient health organizations already provide comprehensive information based on the latest research, the patientINFORM model takes the unprecedented step of including the support of medical and scholarly publishers who make available online access to peer-reviewed medical journals immediately upon publication. "The International Association of Scientific, Technical and Medical (STM) Publishers fully supports this major initiative," said Eric Swanson, Chairman of the STM. The final product is a resource where patients can go to find links to select articles while benefiting from the interpretation of the research provided by trusted patient organizations.

"patientINFORM's motto, Access + Interpretation = Understanding + Empowerment underscores the guiding principle of this initiative," explained Rose Marie Robertson, MD, the chief science officer of the American Heart Association. "The active involvement of three of the most trusted voluntary health organizations in the world will help patients and caregivers understand and act upon the latest research on the diseases and conditions that cause nearly 2 of every 3 deaths, afflicting millions of Americans."

About the American Cancer Society
The American Cancer Society is the nationwide community-based voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer, through research, education, advocacy, and service. No matter who you are, we can help. Contact us anytime, day or night, for information and support. 1-800-ACS-2345 or www.cancer.org.

The American Diabetes Association
The American Diabetes Association is the nation's leading nonprofit health organization providing diabetes research, information and advocacy. Founded in 1940, the American Diabetes Association conducts programs in all 50 states and the District of Columbia, reaching hundreds of communities. The mission of the Association is to prevent and cure diabetes and to improve the lives of all people affected by diabetes. To fulfill this mission, the American Diabetes Association funds research, publishes scientific findings, provides information and other services to people with diabetes, their families, health professionals and the public. The Association is also actively involved in advocating for scientific research and for the rights of people with diabetes. For more information call 1-800-DIABETES or visit www.diabetes.org.

About the American Heart Association
Since 1924 the American Heart Association has helped protect people of all ages and ethnicities from the ravages of heart disease and stroke. These diseases, the nation's No. 1 and No. 3 killers, claim more than 927,000 American lives a year. The association invested more than $510 million in fiscal year 2003-04 for research, professional and public education, advocacy and community service programs so people across America can live stronger, longer lives. For more information visit www.americanheart.org.

Contacts:

David Sampson
American Cancer Society
(213) 368-8523
david.sampson@cancer.org

Kendra Gutschow
American Diabetes Association
(703) 549-1500 ext. 2146
kgutschow@diabetes.org

Darcy Spitz
American Heart Association
(212) 878-5940
darcy.spitz@heart.org

Susan Spilka
John Wiley & Sons
(201) 748-6147
sspilka@wiley.com

NEW YORK, NY EMBARGOED until 2 am EST December 8, 2004 – Scientific publishers and the nation's leading voluntary health organizations have announced a groundbreaking initiative to help patients and caregivers close a critical information gap.

Scheduled to launch as a pilot project in Spring 2005, patientINFORM (www.patientinform.org) is a free, online service dedicated to disseminating original medical research directly to consumers. A collaborative effort of leading voluntary health organizations, scholarly and medical publishers, medical societies, and information professionals, patientINFORM will provide patients and their caregivers with online access to up-to-date, reliable research for specific diseases. Participating voluntary health organizations will integrate the information into materials created for patients and link to free full-text research articles and additional selected material on journal websites.

"Not only will patientINFORM connect patients and their caregivers with the latest research, it will help them to put it into context. By making it easier to understand research findings, patientINFORM will empower patients to have a more productive dialogue with their physicians and make well-informed decisions about care,” said Harmon J. Eyre, M.D., national chief medical officer of the American Cancer Society.

patientINFORM will initially focus on three diseases, cancer, diabetes, and heart disease, through the participation of three voluntary health organizations: The American Cancer Society (ACS), the American Diabetes Association (ADA), and American Heart Association (AHA); more than 20 publishers (see attached list); the International Association of STM Publishers; the Association of American Publishers/Professional & Scholarly Publishers; and the Welch Medical Library at The Johns Hopkins University.

This groundbreaking initiative is being driven by recent trends indicating that public awareness of clinical research, heightened by media coverage and fueled by the spread of broadband Internet, has led more and more patients to go online to find the latest information about treatment options. Still, even many knowledgeable consumers can find it difficult to fully understand, evaluate, and make sound decisions based on what they learn from their Internet research.

"The health literacy problem has been called a 'silent epidemic' because many patients are embarrassed or intimidated and do not seek help to understand difficult or complicated information. The result is that a crucial part of their medical care is missing, and so they put their health at risk,” said Richard Kahn, Ph.D., chief scientific and medical officer of the American Diabetes Association.

Under the patientINFORM web-based pilot project, when patients, their caregivers, or others visit the voluntary health organization websites with general questions and to read news stories and other web content created by the organizations to help interpret the latest research, they will also have the option of being connected directly to the source through links to free full text of the research articles on the journal websites. Healthcare consumers will be able to access selected journal articles as soon as they are published. Each health organization's website will be listed on www.patientinform.org.

Later phases of patientINFORM will extend services to cover a wider range of medical conditions and draw upon the offerings of a broader group of publishers.

"patientINFORM's motto, Access + Interpretation=Understanding + Empowerment underscores the guiding principle of this initiative,” explained Rose Marie Robertson, MD, the chief science officer of the American Heart Association. "The active involvement of the three largest and most trusted voluntary health organizations in the world will help patients and caregivers understand and act upon the latest research on the diseases and conditions that afflict millions of Americans.”

Participating publishers will provide the voluntary health organizations with increased online access to their peer-reviewed biomedical journals immediately upon publication. Content from back issues of scholarly journals will also be available to the groups, broadening access to include a vast array of research articles. The groups will be able to search the most current American, European, and other international research to help them identify relevant advances on specific diseases and treatments which they will then be able to pass on to patients.

About the American Cancer Society

The American Cancer Society is the nationwide community- based voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer, through research, education, advocacy, and service. No matter who you are, we can help. For more information, visit: www.cancer.org.

About the American Diabetes Association

The American Diabetes Association is the nation's leading nonprofit health organization providing diabetes research, information and advocacy. Founded in 1940, the American Diabetes Association conducts programs in all 50 states and the District of Columbia, reaching hundreds of communities. The mission of the Association is to prevent and cure diabetes and to improve the lives of all people affected by diabetes. To fulfill this mission, the American Diabetes Association funds research, publishes scientific findings, provides information and other services to people with diabetes, their families, health professionals and the public. The Association is also actively involved in advocating for scientific research and for the rights of people with diabetes. For more information visit: www.diabetes.org or 1-800-DIABETES.

About the American Heart Association

Since 1924 the American Heart Association has helped protect people of all ages and ethnicities from the ravages of heart disease and stroke. These diseases, the nation's No. 1 and No. 3 killers, claim more than 930,000 American lives a year. The association invested more than $407 million in fiscal year 2002-03 for research, professional and public education, advocacy, and community service programs so people across America can live stronger, longer lives. For more information visit www.americanheart.org.

Editor's Note: The URL "patientinform.org" will go live with more information before the pilot launches formally.

Initial participants include:

Voluntary Health Organizations
American Cancer Society
American Diabetes Association
American Heart Association

Publishers
American Association for the Advancement of Science
American Association for Cancer Research
American Cancer Society
American Diabetes Association
American Heart Association
American Physiological Association
American Roentgen Ray Society
American Society of Hematology
Annals of Internal Medicine
Blackwell Publishing
BMJ Publishing Group Ltd
Elsevier
Massachusetts Medical Society
Nature Publishing Group
Oxford University Press
Society of Nuclear Medicine
Springer
John Wiley & Sons, Inc.
Wolters Kluwer Health

Other Organizations
Association of American Publishers/Professional & Scholarly Publishers
International Association of Scientific, Technical, & Medical Publishers
Johns Hopkins University Welch Medical Library

Contacts:

Maurice Long,
c/o Susan Spilka
John Wiley & Sons, Inc.
(201) 748-6147
sspilka@wiley.com

David Sampson
American Cancer Society
(213) 368-8523
david.sampson@cancer.org

Diane Tuncer
American Diabetes Association
(703) 299-5510
dtuncer@diabetes.org

Stephen Prudhomme
American Heart Association
(214) 706-1582
stephen.prudhomme@heart.org