Blogs

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The Waterloo Institute for Health Informatics Research (WIHIR), the School of Optometry and the School of Pharmacy (all at the University of Waterloo), the Conestoga College Institute of Technology and Advanced Learning and the National Institutes of Health Informatics (NIHI) are co-hosts of the first Advances in Health Informatics Conference (AHIC) from April 28 to 30, 2010 at the University of Waterloo's School of Pharmacy at the Health Sciences Campus in Kitchener, Ontario, Canada.

Editors of several medical research journals have issued a statement calling for rigorous standards and transparency in research that is designed to influence patient care and health policy.

Led by Dr. Harold Sox, co-chair of the 2009 US Institute of Medicine Committee on Comparative Effectiveness Research Prioritization, the statement's author list includes editors of Medical Decision Making, Trials, The Cochrane Library, Journal of Clinical Epidemiology, and PLoS Medicine. Editors of Journal of General Internal Medicine, The American Journal of Managed Care, Clinical and Translational Science, and Croatian Medical Journal have also endorsed the statement.

Editorial

Every year, millions of patients worldwide participate in randomized clinical trials hoping to benefit from an experimental treatment or potentially help someone else with the same condition.

However, rules and regulations are becoming a menace to academic clinical trials where resources are limited and risks may be much less than those associated with new experimental drugs.

"There is no question that research participants need protection," write Paul Hébert, Editor-in-Chief, CMAJ, and coauthors. "But regulations have grown so burdensome that they are overwhelming the very things they are meant to support and safeguard. Consequently, clinical research has been substantially decreased among industrialized countries."

Sholom Glouberman, president of PAC, was recently a guest on TVO's The Agenda with Steve Paikin, as part of the series: Our Changing Relationship with Death.

Sholom, with a panel of diverse guests, discussed the highly debated topic of Euthanasia.

Check out the video here.

What are your thoughts on this issue?

Important to our association is the collection of patient narratives, documenting patient experiences. It is through the collection and articulation of these narratives that we hope to gain a more thorough understanding of what the patient perspective is on current health care systems and services, and the criteria that describe patient sensitive care.

We invite you to share your story with us.

Please write to this email for more information on how your story can help us to change our current health care system.

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We were overwhelmed by the response at the Canadian Patient Summit, and look forward to continuing the conversations that have begun there.

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PAC will be attending the Canadian Patient Summit this weekend at the Marriott Hotel in Toronto.

We are looking forward to meeting other interested parties, advocating for the inclusion of the patient voice in Canadian health care decision-making.

Hope to see you there.

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In partnership with the Canadian Health Services Research Foundation, PAC put together a panel for the CIHR Primary Healthcare Summit, 'Patient-Oriented Primary Healthcare -- Scaling Up Innovation', in Toronto, on January 19, 2010.