Society for Participatory Medicine
e-patients.net blog
general
US Health Care Reform: A Contemporary Example of
Goodhart’s Law?
Goodhart’s law – named after a former chief economist of the Bank of England – says that whatever social or economic indicator or other surrogate measure you adopt as a financial target ceases to be a relevant target once you have adopted it because it loses the information content it had originally. What is the [...]
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Question For President Obama
Guest Post: Cindy Throop from http://Open-Health.us, a participatory forum dedicated to effectively including patients in the discussion, planning, and evaluation of health care reform. A lot of money is about to be invested in health care, particularly into health information technology (HIT). Does this mean that when your health care provider(s) implement electronic medical records, [...]
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My Right to Data, Happiness, and a Long and Healthy Life
“To alienate [patients] from their own decision making is to change them into objects.” – P. Freire, Pedagogy of the Oppressed The newly drafted Declaration of Health Data Rights, created by patient advocates, caregivers, health care professionals, technology and policy experts, and entrepreneurs (in some cases, all attributes in the same person), states that its [...]
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e-Patients Discover Unrecognized Side Effects
Detecting drug complications is too important to leave to doctors or FDA administrators. We have learned the hard way that randomized controlled trials (RCTs) don’t detect all the adverse drug effects that may be important. Far too often, serious side effects brought on by popular drugs can go unrecognized for years. A recent review in [...]
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“No political power center for regular people”
in health reform
Aliya Sternstein writes for NextGov, a site devoted to “technology and the business of government.” We spoke last week for her piece about the White House’s use of social media. There are some people who, when you speak with them, the conversation goes to new places. This was one of those times.
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In Iran and in the US Health Care System,
Citizens’ Access to Computable Data
Frees Everything!
Dedication: This post is dedicated to Regina Holliday and to the memory of her husband, Frederick Allen Holliday, who passed away on June 17. Regina’s story has energized many of us to create the Declaration of Health Data Rights we are asking you to endorse on a website or via twitter. Definition: Data in a [...]
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“Economic Euthanasia On the Rise”
(Veterinary Practice News)
This is not going to be easy to absorb, if you really let it sink in. My wife’s a veterinarian, and we sometimes compare notes. So this headline caught my attention. Excerpt from the article: Economic Euthanasia On the Rise Euthanasia can be the last act of love when disease or time has made death [...]
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Imagine someone had been managing your data:
next anecdote
Next anecdote about poorly managed medical data: Amen! Just had an incident where my SS# was attached to a different patient’s name in the electronic med record. And the health facility will not tell me where the error occured, or how long someone else’s name was linked to my ss# and my medical record. Discovered [...]
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Participatory Medicine: Blending Traditional Medicine with “Health 2.0″
Tom Davenport, in a Harvard Business Publishing Blog post, does a nice job of discussing the merging of “Health 2.0″, the aggregate of online communities, wiki’s, bloggers, and tweets, with the role of traditional medical providers. He asks whether, if you get seriously ill, you will rely solely on colleagues online or whether you’ll seek out a [...]
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e-Patients Are Proud Deviants!
The wonderful Atul Gawande delivered this past Friday a commencement address, titled “Money,” to the graduates of the University of Chicago Pritzker School of Medicine. He touched on and expanded on the theme of his groundbreaking article “The Cost Conundrum” that was reviewed on this site. The transcript of the commencement address is definitely worth reading because [...]
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