Archive for March, 2010

Profiles in Courage 2010 Edition

March 23rd, 2010

I remember reading President John F. Kennedy’s Profiles in Courage when I was a girl and being inspired by the recounting of Senators standing up to colleagues and constituents alike to speak out and vote on principle for what they thought was in the highest interest of the nation. Courage was the word that has most frequently come to mind with the passage of the Patient Protection and Affordable Care Act, better known and the Health Reform Bill, Sunday night in the House of Representatives. Despite levels of vitriol not seen since the Civil Rights Movement of the 1960s, complete with shouting, spitting, and name-calling outside and inside the Chamber, Democratic members of Congress came together to lead. With this bill the administration made a statement about who we are as a nation, as a people, a nation that cares and supports all its citizens, a nation that understands that a foundation of health is necessary for enjoyment of all our constitutional rights and the many privileges of living and working in this great country, a nation that can find money for peace as well as war.

Some say that this is a government take-over of healthcare. It is not. Insurance companies, drug manufacturers, and hospitals are still standing and benefit from more insured. Small businesses are key beneficiaries and there will greater opportunities for job mobility without fear of losing and never regaining insurance coverage one can afford. Patients benefit. Almost all of us will have a “pre-existing condition” if we live long enough.

Some say it costs too much. How much is too much for health? Ralph Waldo Emerson once said that “The first wealth is health”. We would do well to remember that. Do we need to do more to reduce (not just shift) costs of healthcare while maintaining/improving quality? Yes. However, one bill is not required to do all things.
If the purpose of government in a capitalistic, constitutional democracy is to do collectively what we cannot do individually to ensure a strong, stable and prosperous country then this Democratic Congress has done its job. They have my vote not only in the next election, but for the next edition of Profiles in Courage.

DC Patient to speak at NIH conference on the E-Patient April 7

March 18th, 2010

Dear Friend of Health and Patient Advocacy,

While we all wait to learn the results of the tremendous public debate on expanded health care and insurance reform, significant changes in the practice of medicine and delivery of health care are proceeding non-stop. Electronic health records are one example of how technology is transforming patient-provider interactions, but digitalization is also being applied to new devices and medical technologies. When combined with wireless communication, patient and diagnostic data can be uploaded from and sent to all locations with an Internet connection. For patients with chronic conditions anywhere or living in remote areas, this means vital signs and many health conditions can be monitored and reported without limitations of geography, transportation or time. But one more change is also quickly revolutionizing health care and that is genomic applications.

Now, the Friends of the National Library of Medicine has organized front-line developers and users of these new technologies in a ground-breaking two-day conference at the Natcher Center at the National Institutes of Health in Bethesda, MD to highlight how these changes are fostering true patient-centered care and creating a new “e-Patient” paradigm. The conference will also put the patient experience at the forefront of the presentations and consider the meaning of comparative effectiveness evaluation in a time of personalized health care.

Although the early registration deadline is past, the Friends of the National Library of Medicine is offering a 50% registration discount to personnel associated with nonprofit and patient advocacy organizations. You can review the entire ePatient program at, but to register at the $195 rate, please send an email requesting this special rate to Sarah Pease at

Thank you, and I hope to see you at FNLM’s ePatient conference on April 6-7, 2010.

Download the promotional flyer


Richard Gelula
Executive Director
Friends of the National Library of Medicine

P.S. Flash Update: Dr. David Blumenthal, the Administration’s National Coordinator for Health Information Technology, has confirmed as keynote speaker. Other keynotes will be given by Susan Dentzer and Ewe Reinhardt as well as presentations by leaders in research, technology, industry, patient advocacy and other topics.