Today's guest speaker, Joel Selzer, the founder of Ozmosis.com, will discuss this idea and others as he discusses how to best balance the need for patient privacy with the need for improved health care through information sharing.Want to put your doctor's stethoscope in a twist? Ask them to hand over a complete copy of your medical records. Then watch as they nervously demur, citing state laws, cost, and fuzzy hospital policies.
Jamie Heywood wants those obstacles legislated out of existence so we can access our own health data almost as easily as ordering a pizza. And he hopes consumers will in turn share that data with one another via online communities such as PatientsLikeMe, which he cofounded in 2004.
"Privacy has been used as an excuse by those who have a vested interest in hoarding this information," Heywood says. He believes that the real reason hospitals jealously guard medical records is they don't want to open themselves up to second-guessing from patients—or patients' lawyers. And that lack of openness, Heywood argues, is making us sicker: With data scarce, there's no clear way for physicians to know what treatments are working for other practitioners.
Monday, October 5, 2009
From Wired Magazine's 12 Shocking Ideas that Could Change the World
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4 comments:
As we have discussed this year, there is an inverse relationship between the benefits and drawbacks of information sharing—as more information is shared, the more dangerous the information becomes and vice versa. When Heywood says, "You're talking an entire Vietnam War annually versus a couple of lost jobs," it clearly shows his position that the potential benefits of having access of health records drastically outweigh the drawbacks.
This logic of “kill 100 to save 1000” seems flawed. First of all, people’s livelihood isn’t something dispensable. A person should not need to worry about not getting a job because they have been diagnosed with a disease. Also, we must also consider that this information could be used in unforeseen ways in the future that could be harmful.
Not to say that personal medical information should not be made easily accessible, just that it should be done in a responsible way. Any thoughts on how to do this?
Like so many things we discuss in class, this seriously worries me. While I have never actually tried to review my own medical records, I always held the assumption that something so incredibly personal and literally related to life and death would be relatively available for me to look over (probably after a few phone calls or an in-person visit to my GP). Reading this article not only disillusioned me to the fact that our medical records are not really ours, but has me concerned over the fact that something so belonging to us is not within our control.
After all the moves and two or three insurance changes my family has had just in my eighteen years, why is it that I should trust a handful of doctors - whose offices I've visited probably less than five times each - to accurately maintain my medical history? These doctors just don't have the same vested interest in my medical records as I do; they see hundreds of patients a week and their offices simply don't have the time or motivation to meticulously check and double check the validity and accuracy of every notation made in every patient's file.
I'm not saying doctor's offices are incompetent or constantly making huge mistakes on medical records; I'm only saying that medical records need to be more accessible to the patients whose health histories they detail. How could we each rest assured that the information is accurate or up to date if we never actually see it? That's why I understand the push for digital medical records going between doctors' offices from the standpoint of clarity and the faster exchange of information; it wouldn't be so difficult for a patient to review their history if it could be brought up quickly on an in-office computer on the way out the door or something (as opposed to making the information that much more vulnerable by sending it out in an e-mail).
I can, however, see the other side of digital medical records. How can we know this information will remain secure and private? Our whole class comes back again and again to the notion that the only secure computer is turned off and disconnected, so once this information is finally compiled digitally its bound to have an increasing vulnerability.
I guess my hope is that a relatively secure and accurate system of data aggregation can be applied to medical records in a way that allows the patient to act within their rights to look over their own health histories.
In a technology-dominated era, I believe it is time for the health care industry to update their system to best benefit society. Right now, the health care industry still uses the paper documentation system, which leads to countless clerical errors and often times slows down the patients’ ability to receive medical attention from many different facilities because his or hers medical records have to be transported through the unreliable postal service. By putting medical records online, patients can be properly treated during times of emergency because doctors can easily see what he or she is allergic to and doctors can review he or she’s medical history to find the best course of treatment. Along with being helpful in emergencies, patients and doctors can develop communities and can discuss different ways to treat the symptoms of the patients and can show them how other people have reacted to the medicines and treatments in order to help the patient feel more comfortable about receiving the medical attention. Patients can talk to people suffering with similar diseases or illnesses and the support will help the patients feel more optimistic about finding a cure for their sufferings. Doctors will be able to communicate better with each other and can share new medical discoveries faster and can compare and contrast the best course of treatment for diseases, which will improve the medical field drastically. While there are privacy risks to putting health records online, the ability to access patients’ information in times of need and the dialogue that will be able to emerge from the medical field and patients will cause advancements to occur which will ultimately outweigh all other risks.
Doctors are so widespread that any open network of medical records would all but guarantee abuse. Much like what happened to the passport records of both candidates in our most recent presidential election, it seems likely that every major public figure would have his/her records opened up and then anonymously leaked onto the internet.
The easiest way to get around this problem would be to have the patient control the actual record. They would have it stored in a centralized database (like the ones being put forth by Google and Microsoft), and would have to electronically send the record to the doctor before they went for a visit.
While this seems ideal (assuming the web sites can adequately secure the records), this would create another set of problems. Often one’s medical records are necessary at unexpected times, like medical emergencies. It is not practical to expect an unconscious person to email their records to the emergency room.
To fix this problem we need to create a system with more access to doctors. A wide array of ideas have been put forth to control access and police abuse, but virtually all of these are either reactive or too cumbersome to be practical in the case of a medical emergency. This seems to be the stalemate. Medical records are needed unexpectedly at a moment’s notice, but abuse is also irreversible. Once the records are leaked, they are forever in the public domain. Until an effective access control system is devised, I think it is a really bad idea to keep medical records on the internet.
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