2010: The Year of Open Streams & Fax Machines
I started writing this post while watching a livestream of the LeWeb09 conference in Paris and finished it while watching a livestream of TEDxSV. Open Streams are of many kinds and shapes. They are completely changing how we consume information, news & entertainment.
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It could be a joke and it could be funny! Instead, it is just the sad truth. And embedded in this sad, sorry truth, lies a complete lack of democratic ideals and a deliberate attempt by various parties to keep as much control of your health data as possible. The main communication tool in doctors’ offices at the end of 2009 remains the fax machine, a dinosaur-like, throw-away appliance that is no longer part of the communication tools used by modern communicators and regular users of the Internet. This is in contrast with what is taking place in the highly competitive and innovative world of social media and open streams, and you must conclude that there is a concerted effort by segments of the health care professionals to remain technologically backward.
Regina Holliday’s mural is in the BMJ
We’ve written here before about Regina Holliday (follow her blog), whose husband Fred died June 17. In today’s edition of the British Medical Journal, her mural is the picture of the week:
Ted Eytan MD took the picture and posted it on Flickr. Today he sent this email to Reggie:
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Dear Regina,
You made it, scroll about 3 pages down:
http://www.bmj.com/cgi/section_pdf/339/sep09_3/b3681.pdf
People spend entire careers hoping to change practice by getting published in the BMJ (one of the most prestigious medical journals in the world, if not the most prestigious), and you did it in 2 months through the experience reflected in your art. Incidentally, the publisher had no idea who I was or what I do when they found the photos I took on Flickr, so this was all you. What does that say about the power of the patient voice!
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And what does it say about the power of Regina’s painting to communicate?
While we’re at it, I ask that you read the caption: “Fred Holliday died from kidney cancer aged 39 the day the Senate took up health care reform. Without health insurance he couldn’t afford the tests to investigate the cause of night sweats, fatigue, and bloody urine.”
Participatory Medicine at PdF09: Can we get a do-over?
The poli-tech tribe gathered in New York last week for the Personal Democracy Forum and, as Craig Newmark put it, welcomed “our new nerd overlords.”
Esther Dyson, Jamie Heywood, Rep. Jerry Nadler (D-NY), and I were asked to take on a breakout panel entitled, “From Participatory Politics to Participatory Medicine: The Coming Revolution in Health Care.” Cool, right?
Esther Dyson, Jamie Heywood, Jerry Nadler, and Susannah Fox
Via email, Esther suggested we skip the usual speeches and just tell the audience the questions we’d like to be asked and have a truly participatory session:
- Jamie was going to talk about PatientsLikeMe, HealthDataRights.org, and the power of patients to take control of their own data.
- Esther was going to ask how openness, transparency, measurement, and sharing of data affect health care.
- I was going to talk about which tech trends might forecast higher (or lower) levels of involvement by all Americans in both participatory medicine and participatory democracy.
Then Rep. Nadler arrived and said he’d been told that this was a panel about health care reform. Well, kind of. Not really. But we had to get started.
It didn’t go well. Read more
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 risk that, as soon as the health care system reform becomes an intense focus of policy (as it is now), more and more attention will get devoted, not to controlling health care spending, but to continuing to spend while finding reasons why what was just spent does not form part of what could/should be reformed? Based on the developments of last 2 weeks, including the huge fight over the real cost of the proposed reform and the continuing discussion over Atul Gawande’s masterful article, “The Cost Conundrum” , my guess is that we are heading straight into Goodhart’s kingdom. Seriously, when was the last time you saw a winner of the Nobel Memorial Prize in Economics make a comment in a blog post about health care?
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, you will have quick and easy (and free) access to your health data?
Ummm, not necessarily.
It may seem like a no-brainer, but we need to make sure President Obama knows that we – as patients, future patients, caregivers, citizens, and taxpayers – really care about having access to our health information. On Wednesday, July 1, 2009, Obama will be holding an online town hall meeting on health care reform to answer some common questions. People can submit questions via Facebook, YouTube, and Twitter (twitter hashtag: #WHHCQ)
President Obama will answer common questions. If enough of us ask, maybe we will get a verbal commitment from Obama to support our health data rights.
Here are a couple of twitter examples:
Obama, will #hcreform support my right to access and use #myhealthdata ? #WHHCQ
Hi Prez Obama! Will #hcreform support humans’ access to their own health data, kinda like how they access their pet’s data? #WHHCQ
“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.
Mobile, social technology and the impact on health care
Fard Johnmar interviewed me about internet adoption, the use of social technologies among minority groups, and my hope that e-patients’ “passion, knowledge, and ingenuity is brought forward no matter what else is planned for health care reform.”
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