FW: Health Organizations and Publishers Announce Major Information Initiative - patientINFORM.org

["Hamaker, Chuck" <cahamake@email.uncc.edu>]

Forwarded with permission. 
Chuck

From: Peters Dawn [mailto:DPeters@bos.blackwellpublishing.com] 
Sent: Wednesday, December 08, 2004 7:27 AM
Subject: Health Organizations and Publishers Announce Major Information
Initiative - patientINFORM.org

Voluntary Health Organizations, Publishers Announce 
Major Information Initiative 

Service Will Allow Patients Direct Access to Latest Research

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; the Welch Medical Library at The Johns Hopkins
University, and MedLinePlus (part of the National Institutes of Health's
National Library of Medicine).

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 (see note attached).

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.

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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 Medical 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
Wiley
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
National Library of Medicine's MedlinePlus, part of the National Institutes of Health

Contacts:

Maurice Long,
c/o Susan Spilka
Wiley
(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

Dawn Peters 
Public Relations Manager
Blackwell Publishing
350 Main Street
Malden, MA 02148-5018
Tel:� 781-388-8334� Fax: 781-338-8334
dpeters@bos.blackwellpublishing.com 
www.blackwellpublishing.com
Partnerships in learning, research, and professional practice

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