Taxpayer Access: The NIH Public Access Policy
Every year, the U.S. federal government funds more than $29 billion in biomedical research through the National Institutes of Health (NIH). The research, which inspires about 80,000 individual articles (each year), is then published in journals that only subscribers can access. Doctors, scientists, patients, taxpayers, and health professionals are unable to access NIH-funded research without paying access fees that can reach $30 per article or over $23,000 for an institutional yearly subscription.
“Taxpayer access” – the principle that American taxpayers should have free, timely, public access to the results of publicly funded research – would change this, and put critical biomedical research into the hands of those who need it.
Crowdsourcing a Survey: Health Topics
The Pew Internet Project will conduct a national telephone survey this fall about the internet’s impact on health and health care. One of the first tasks is to look at our tried and true “trend” questions and decide which ones we should repeat as is and which ones need to be updated.
Since I benefit so much from reader comments on this blog, I’d like to crowd-source some questions for this survey.
The first question I would like to consider is the “screener” question which yields our estimate that 80% of internet users go online for health information.
Please vote for GlobalCures
Update: voting ends midnight EDT Monday 9/29.
Great post Friday on John Halamka’s GeekDoctor blog. It’s about GlobalCures, an entry in MembersProject, an American Express contest that has $2.5 million in prizes for proposals to make a positive change in the world. 1190 proposals have winnowed down - through popular vote - to 25 semifinalists; five will win grants.
The GlobalCures entry says:
The Im-Patient Consumer
Josh Seidman has a new entrant in the health care name game: The Im-Patient Consumer. As he explains, “Americans for the most part are too [expletive of choice] patient with the absurd care that they get for more than $2 trillion a year.”
Cognitive Surplus & Tough Economic Times: An Explosive Cocktail?
The growth of the e-Patients movement may be experiencing surprising strength from a completely unexpected source, with many people growing the ranks of the movement because of the greatest motivator of all: saving money.
Clay Shirky’s cognitive surplus observation, made in April 2008, keeps on resonating as I see more and more evidence that, contrarily to what some naysayers would want us to think, the internet and social media are fundamentally important to a significant percentage of Americans looking for answers about wellness or sickness, health or disease.
In his speech Shirky noted :
“The value in media is no longer in sources but in flows; when we pool our cognitive surplus, it creates value that doesn’t exist when we operate in isolation. The displacement of TV watching is coming among people who are using more of their time to make things and do things, sometimes alone and sometimes together, and to share those things with others.”
Dr. Val Jones Leaves Revolution
Although not explicitly mentioned, it appears Dr. Val Jones, the Senior Medical Director at Revolution Health, has quietly left the company and is starting her own venture, Better Health. You can read an interview where she discusses her new life online, with not a single mention of her 2+ year efforts at Revolution. Rumor has it that Revolution actually terminated most of its relationships with medical staff, moving highly paid doctors like Dr. Val from full-time to a consulting role only. Glad to see her move on with her own “brand” and venturing out on her own!
Pareto’s Tyranny vs. the Paradox of Rarity: Why ACOR succeeded
Why have rare diseases been so disproportionally represented in the world of internet-based online medical communities since the early 90s? Is there a unique reason to explain why so many of the rare disease patients understood long before anyone else the importance of the wisdom of crowds. Could it just be explained by the long tail in medicine?
I believe that faced with the tyranny of Pareto’s Principle these patients instead got empowered by the Paradox of Rarity.
Pareto’s Principle, also known as the 80/20 rule, guides most of the current medical system as well as the work designed to change and improve the healthcare system. That leaves all those suffering from unusual and complex diseases out in the cold, almost obligated to become e-patients (equipped, enabled, empowered, engaged, equals, emancipated and experts) if they want to optimize their chances to survive the disease.
For Sale: Revolution Health
Why is Steve Case’s online health venture already looking to sell itself, just a year and a half after it launched? Yet another tale of hubris in the e-health sector.
Cloud computing puts your health data at risk?
In today’s
Windows Secrets, Stuart Johnston writes about the pros and cons of having our health data out on the Internet, as proposed by Google Health and Microsoft HealthVault. Quotes: “Selling prescription records is a multibillion-dollar-a-year industry”; “Disclosure of health information is [already] out of control.” Yikes?
e-patients: How they can help us heal healthcare, chapter 1
e-Patient Dave joined this group in March 2008 thanks to an introduction by Danny Sands, MD, his primary care physician. Dave quickly established himself as the number one fan of the “white paper,” which we had edited and published after Tom Ferguson’s death. On his home blog, The New Life of e-Patient Dave, he noted that not everyone is ready to sit down and read the paper, so he would provide chapter-by-chapter summaries.
Here is the first entry and my reaction to it, as the editor of the first chapter.
white paper
e-Patients:
How They Can Help Us Heal Healthcare
