Petitions | The White House
Showing posts with label access to information. Show all posts
Showing posts with label access to information. Show all posts
Monday, May 21, 2012
Petitions | The White House re: free access to scientific journal articles....
Petitions | The White House
Sunday, May 06, 2012
The Healthcare Blog: Will Regina Holliday Become Health Care’s Rosa Parks?
Blogger's Note: the outcome/s of these issues/activities will have international implications with a direct/indirect application to the 99%/1% movements in the recent past
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Will Regina Holliday Become Health Care’s Rosa Parks?:
By Michael L. Millenson
The protest organized by Regina Holliday over a patient’s right to access their medical information is not quite the same magnitude as agitating for integration in 1950s-era Alabama. Yet there are intriguing similarities between the crusade Rosa Parks launched then and what Holliday is attempting today. Both involve a refusal to accept second-class status and a resolve to push back against entrenched institutions.
Parks’ story is well known. Her refusal to surrender her seat to a white male passenger on a Montgomery city bus in December, 1955, prompted her arrest and a sustained bus boycott by outraged black residents. That boycott’s success propelled a young Martin Luther King, Jr. to the forefront of the fight against segregation. Parks eventually came to be known as the “mother of the modern day civil rights movement.”
Holliday’s protest is seeking media attention – as this is written, it had not taken place – by targeting the American Hospital Association’s annual meeting at a Washington hotel. The rights issue involves how quickly patients are able to see their own electronic medical information after leaving the hospital. The AHA, representing an industry that grew up as “the physician’s workshop,” wants a 30-day grace period to give doctors more time to prepare and review material. Holliday demands immediate access.
What makes this a fight about freedom, and not just fodder for the Federal Register, is its profound potential to affect how each of us takes responsibility for our own health and health care in the digital information age. What is most likely to capture the general public’s interest, however, is the way that general principle finds emotional resonance in Holliday’s personal story.
A widow with two young children, Holliday recalls on her blog how her husband, Fred, died “painfully [from cancer] after suffering for weeks.” She blames inadequate pain management and uncoordinated care due to a chaotic medical record. When they sought access to his electronic medical record, the hospital responded by saying “we must wait 21 days and pay 73 cents per page to see the story of his care. Then they told us we could go home to die.”
Just as Rosa Parks was not a random bus passenger – she and her husband, Raymond, were active members of the NAACP – Holliday is not a random patient protester. An artist, she responded to Fred’s death by becoming a “patients right arts advocate,” producing paintings with titles like “73 Cents,” and “Hubris Hospital” and “Give Us Our Damned Data.”
Also like Parks, Holliday is part of a larger community that shares a similar outrage over being relegated to the back seat, even if in the doctor- and hospital-dominated world of health care, the “back of the bus” is symbolic rather than literal. Her protest drew expressions of support from the National Partnership for Women & Families, the Center for Democracy and Technology and others. But the key to whether this protest is a turning point may lie in a phrase used in a letter supporting immediate access from the Society for Participatory Medicine, to which Holliday belongs. (Disclosure: I’m a Society board member and a friend of Holliday’s, but did not draft the comments.)
The Society wrote: “The overarching principle with respect to patient access to electronic health record data…should be: ‘Nothing about me, without me.’”
That phrase comes from a health care conference held in Salzburg, Austria in the late 1990s. It echoes the slogan, “Nothing about us without us” popularized by disability activists in South Africa and then adopted by activists in this country. It is a powerful statement about equality, engagement and control of one’s own destiny even when those who do not want to share control do so with the best of intentions, whether seeking to help the disabled or trying to implement electronic medical records in hospitals.
The problem, as The Silent World of Doctor and Patient defined it so insightfully more than a quarter-century ago, is that many providers genuinely believe it is their duty to act as “rational agents” on the patient’s behalf without asking the patient’s opinion. In contrast, “nothing about me without me” is the patient’s demand for freedom and, yes, the responsibility that comes with it.
That demand is not unprecedented. I’ve written how new moms were given strict baby feeding schedules by pediatricians until Dr. Benjamin Spock declared that mothers deciding when to feed their babies was “was used by the entire human race until the turn of the century.” How the first American Medical Association code of ethics required patients to obey their doctors, and how it required repeated lawsuits by patients before doctors had to tell patients in clear language the risks as well as benefits of a procedure. And how the AHA, facing the threat of legislation, adopted a Patient Bill of Rights that included such privileges as being told the names of all the doctors treating you.
What distinguishes Holliday’s effort is the power of information access in the digital age. “Give us our damned data” means possessing the raw clinical material that lets us partner with our own doctors or choose other clinicians who better meet our needs. We can go “off the grid,” perhaps “crowdsourcing” questions to others, or we can apply that digitized information to treatment recommendations and outcome prediction algorithms based on the same evidence our doctor uses.
Demanding access to our digitized information immediately, rather than when it is convenient for the doctor and hospital to give it to us, is a stark declaration that it is our health and our lives that are immediately at stake: “Nothing about me without me” from our first cry for food on the day we are born and then every day after.
This dispute may soon be forgotten as a kerfuffle over criteria for “Stage 2 meaningful use” subsidies from the Department of Health and Human Services. But if it can ignite an understanding about what takes for us to be true equals in health and health care decisions, it could be the start of a mass movement that would make Rosa Parks proud.
Michael Millenson is a Highland Park, IL-based consultant, a visiting scholar at the Kellogg School of Management and the author of “Demanding Medical Excellence: Doctors and Accountability in the Information Age.
Forbes: (U.S.) Hospital Association "Declares War" on Patient Empowerment
Blogger's Note: click on the pdf link for letter from AHA (as below):
"A firestorm has been triggered by the American Hospital Association’s (AHA) 68 page letter (PDF) commenting on the Stage 2 Meaningful Use proposed requirements."
"Our members are particularly concerned with the proposed objective to provide patients with the ability to view, download and transmit large volumes of protected health information via the Internet (a “patient portal”). The AHA believes that this objective is not feasible as proposed, raises significant security issues, and goes well beyond current technical capacity. We also believe that CMS should not include this objective because the Office of Civil Rights, and not CMS, regulates how health care providers and other covered entities fulfill their obligations under the Health Insurance Portability and Accountability Act (HIPAA), including the obligation to give patients access to their health records. Please see our detailed comments for more
recommendations on changes to specific objectives and measures."
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Hospital Association "Declares War" on Patient Empowerment:
A firestorm has been triggered by the American Hospital Association’s (AHA) 68 page letter (PDF) commenting on the Stage 2 Meaningful Use proposed requirements. The reaction has been swift from various individuals and organizations focused on patient rights and empowerment.
Consumer Rights and Patient Empowerment Organizations also weighed in.
- The Center for Democracy & Technology picked apart the legal “hail mary” that the AHA was using in their response. See Hospital Association Fights Digital Data Access for Patients for more.
- The Society for Participatory Medicine stated the following. “Patient engagement is the cornerstone of a successful, cost effective, and high-quality health care system,” said Daniel Z. Sands, MD, the Society’s president and a practicing internist. “Those goals cannot be achieved unless we give patients access to their own health information and encourage them to use it.”
Friday, April 06, 2012
Friday, February 03, 2012
Stem Cell Network Blog: News roundup: open access, new funding for personalized medicine and spinal cord injury update (eg. Elsevier - subscriber-based publisher)
February 01, 2012
News roundup: open access, new funding for personalized medicine and spinal cord injury update
Some updates and news items of note:
Call for boycott of subscriber-based journals gains momentum
The ongoing friction between proponents of open access and the academic publishers has jumped into the spotlight once again with calls from a number of academics, most notably from prominent British mathmetician Tim Gowers, who publicly announced his decision to stop submitting and reviewing for Elsevier. His objections are worth reading. Within days of his comments, a web site was created that allows other researchers to pledge their support for open access and against the practices of Elsevier and other academic publishers. At time of writing, there were over 2400 signatures. Of course, this is not the first time such calls for open access have surfaced from within the research community, the last big push resulted in the formation of the Public Library of Science in 2000.....
Tuesday, January 24, 2012
open access: Journal of Translational Medicine - Supporting the advancement of science: Open access publishing and the role of mandates (the Research Works Act[1])
The complete article is available as a provisional PDF. The fully formatted PDF and HTML versions are in production.
excerpt pdf file:"In December 2011 the United States House of Representatives introduced a new bill, the Research Works Act (H.R.3699), which if passed could threaten the public’s access to US government funded
research. In a digital age when professional and lay parties alike look more and more to the online environment to keep up to date with developments in their fields, does this bill serve the best
interests of the community? Those in support of the Research Works Act argue that government open access mandates undermine peer-review and take intellectual property from publishers without compensation, however journals like Journal of Translational Medicine show that this is not the case. Journal of Translational Medicine in affiliation with the Society for Immunotherapy of Cancer demonstrates how private and public organisations can work together for the advancement
of science.
Editorial
Journal of Tra nslational Medicine is an open access journal published by BioMed Central that aims to optimise communication between basic and clinical science. Now in its 10th year of publication
the journal is successful in its aim for fostering communication from bench to bedside.
A new bill, the Research Works Act[1], has been introduced in the United States House of Representatives threatening the public’s access to US government funded research and the foundation on which Journal of Translational Medicine was built.
The bill states:
“No Federal agency may adopt, implement, maintain, continue, or otherwise engage in any policy, program, or other activity that:
(1) causes, permits, or authorizes network dissemination of any private-sector research work without the prior consent of the publisher of such work; or (2) requires that any actual or prospective author, or the employer of such an actual or prospective author, assent to network dissemination of a private-sector research work.”
If passed, this bill would force the retraction of the public access policy of the National Institutes of Health[2], who mandate that recipients of their grants must make their published research publically accessible by depositing full-text versions in open access repositories (such as PubMed Central), and prevent similar policies from being introduced by federal agencies in the future.
It is argued [3, 4] that research funded by tax-payers should be made available to the public free of charge so that the tax-payer does not in effect pay twice for the research - first for the research to be done and then to read the results. As much as this may be true, the biggest detriment seems to be to developments in science. Open access to research means the widest possible dissemination of information. Limiting access to a (by comparison) small subset of people with subscriptions can stunt further developments......"
Thursday, January 19, 2012
Wednesday, February 16, 2011
full access: Assessing the information desire of patients with advanced cancer by providing information with a decision aid, which is evaluated in a randomized trial: a study protocol
Discussion
This study attempts to settle the debate on the desirability of informing patients with cancer. In contrast to several earlier studies, we will actually deliver information on treatment options to patients at the point of decision making.Trial registration: NTR1113
Tuesday, August 10, 2010
Tuesday, July 20, 2010
What the Doctor Is Really Thinking - WSJ.com
"The year-long OpenNotes study, funded with a $1.5 million grant from the Robert Wood Johnson Foundation, involves 25,000 patients and their primary-care physicians at Beth Israel Deaconess, Geisinger Health System in Danville, Pa., and Harborview Medical Center in Seattle. "We want to break down an important wall that currently separates patients from those who care for them," says lead investigator Tom Delbanco, a Harvard Medical School professor who treats patients at Beth Israel."
"Patients have a legal right to see their entire medical record including doctor's notes."
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