Voluntary health organizations, publishers announce major information initiative

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http://www.medicalnewstoday.com/medicalnews.php?newsid=17531

Voluntary health organizations, publishers announce major information initiative

09 Dec 2004

Service will allow patients direct access to latest research - 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 s 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

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

on, 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.

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

ls 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

s Hopkins University Welch Medical Library

National Library of Medicine's MedlinePlus, part of the National Institutes of

Health