Heart Gadgets Test Privacy-Law Limits – WSJ.com

The small box inside Amanda Hubbard’s chest beams all kinds of data about her faulty heart to the company that makes her defibrillator implant.

Ms. Hubbard herself, however, can’t easily get that information unless she requests summaries from her doctor—whom she rarely sees since losing her insurance. In short, the data gathered by the Medtronic Inc. MDT -0.14% implant isn’t readily accessible to the person whose heartbeat it tracks.

“This is my health information,” said Ms. Hubbard, 36 years old. “They are collecting it from my chest.”

The U.S. has strict privacy laws guaranteeing people access to traditional health files. But implants and other new technologies—including smartphone apps and over-the-counter monitors—are testing the very definition of medical records.

via Heart Gadgets Test Privacy-Law Limits – WSJ.com.

11 thoughts on “Heart Gadgets Test Privacy-Law Limits – WSJ.com

  1. This is an interesting topic and something of a gray area for corporations. Of course any company will invest in technology that can improve the bottom line, but without an ROI then it is hard to justify the expense. While I would like to be able to access the data that my hypothetical implant collects, I would have no understanding in its raw form. As Medtronic explains it would be quite costly to implement a system that would make it understandable for the average Joe. If the data is used to monitor the implants, adjust treatment, or protect the recipient; I can understand the use of the data. However, if the company is harvesting the data for profit, I do not believe that the data will be protected or used in the patients best interests.

  2. This article speaks more to the shambles that is our medical system than the proprietary-ness of our personal data. That this is even a problem is more an issue than the question of ethics surrounding the data. I don’t think we’ll ever see a time when we will have full control over our own data. Too many businesses are built on the lose foundation concerning privacy (and for that matter, ownership) that it would cause too much trouble to prevent in the future. A certain amount of anonymity will inevitably be lost if we want these services.

  3. This is a very interesting topic that I have never really thought about but I think it is absurd that there are regulations in place that would prohibit medtronic from giving the information it is gathering on Ms. Hubbard to her. Although I can not think of a reason why Ms. Hubbard would need that information before her physician does to not readily supply her with the information I belive is a flaw in this technology.

  4. I understand Medtronic wanting to keep their clients’ medical records as private as possible. However, when it comes to users accessing their own medical records, their should be no question or hassle that comes with this access. Ms. Hubbard is hiring Medtronic, and, in turn, paying them quite a bit of money. Therefore, she deserves the right to see the information that she deems valuable which comes from her own body. If anything, Ms. Hubbard should have the capability to access her direct medical reports on a daily, weekly, monthly, or annual schedule.

  5. While patients should be able to access their current medical data at any time, without using a method that properly allows the patient to interpret the information, there is no point of giving access. Depending on how costly it would be to design a system to relay the data into a patient-interpretable form, they should definitely look into the creating the system. If more patients knew this could be an option, maybe there would be more demand for it. It would make it a lot easier for patients to get their most up-to-date info on their own condition. Although, of course this patient information would have to be in a secure form. We are constantly advancing technology in every aspect of our lives and it would Medtronic should start innovating more into what is more current, because over time, more people are going to be wanting to access their personal medical information in an easier way than directly going to their doctor.

  6. I agree with most of my classmates that have posted here. The main question is, “Why is this data not considered medical data, and if it is why is it being withheld?” I am very surprised this is something that is not completely open to the user being monitored. The excuse for not sharing the data can’t be because it would be online because there are already companies doing this. Many citizens medical records are already stored online in presumably high security physical/digital locations. To say that someone can’t access information related to their health seems illegal and also unethical. The companies that create these technologies definitely have the capabilities to create a more robust system. Unfortunately they are choosing not to.

  7. I can understand where Amanda Hubbard and Medtronic are coming from. I do believe that a client with a data gathering medical implant should be able to access that data, especially when the data is being transmitted to wireless monitors in the patient’s home. On the flip side of that, depending on what data is being gathered it is highly likely that the patient would not be able to make any sense or use of it. So while I agree that the data collected won’t be of much use to the patient, it should still be made available to them. Further down in the article where Mr. Campos describes the steps he has taken to track his medical conditions and the improvements he has made because of them is a prime example of while the data should be available.

  8. I think it is rather absurd that Ms. Hubbard cannot easily see the data that is being generated from inside her own body. I don’t even think it would be very hard to allow Ms. Hubbard to see her own data either. All they would need to do is add a profile for her to the website but only allow her to access her own records. Also the article brought up an interesting point about the company selling health records to other companies. I don’t have a problem with companies selling this information as long as they do it without selling the names of the people. Because companies could use this data to help potentially save lives so it is worth it. Overall I just think the law needs to be changed so patients can see data about themselves. I realize the data may not make complete sense to the patients but they still should be allowed to see it. They should at least get the same information that the doctors get from the device company. The bottom line is that the law really needs to be changed to today’s modern times.

  9. I already have six posts, but I wanted to say that I don’t think this is that big of deal. first off, how would she be able to see the information about her heart short of having a large home installation of the technology required. they could maybe send a summary to her phone or home computer, but I don’t see the point. The comp[any is monitoring her and will alert her if she needs help. I don’t think that there is anything wrong with the company using the data (with Mrs. Hubbard’s permission ) to further medical research, she should be happy that she has a pacemaker andis being monitored 24/7 for health issues.

  10. This seems to have the same problem as almost every other new technology that has been created over the past years, privacy and data. Companies seem to think that data they collect from us is theirs, when in reality the data should be ours. In this case the data should be the property of the patient that the data is from. The data is her medical record and seems morally wrong to be kept from her, but as is the case with almost all technologies now, to use the service you need will have to sacrifice you data being collected or your privacy. I believe it is common sense that the patients data should be the property of the patient and the fact that it is being kept from her is wrong.

  11. Patients should be able to access their medical records even without a visit. It is unethical for Medtronic to not allow this woman from seeing her records, because she can’t afford a visit to the doctor. I understand that they want to keep the records as private as they can, but this is her life. She deserves to be able to know exactly how she is doing. Something as simple as sending her notifications if she has a smart phone when they collect data. She can easily receive these messages for a low cost (if any). This will allow her to be updated on her condition, and Mestronic can keep the records safe with their patients.

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