6 ms·

Complaints From a Single Doctor Caused Government to Take Down a Public Database

120 points by knowtheory 15y ago

pavel_lishin 15y ago
The headline is technically true, but not very accurate; the database has since been brought up, but as the article states: > Nov. 9 - HRSA restored public access to the database, but as many reports have noted, it comes with a major caveat. According to the website, users of the new database are no longer allowed to combine information gleaned from the public database with any other publicly available information in a way that would identify doctors. Or in other words, the government is now trying to tell the public -- including the press -- what it’s allowed to do with publicly available information.
- tantalor 15y ago
  Looks like the NPDB people have added an EULA you must agree to before accessing the database. > In order to access the [Public Use Data File], users will now be asked to review and agree to a Data Use Agreement (DUA) that spells out specifics of how the data provided in the PUF may be used in accordance with the law. http://www.npdb-hipdb.hrsa.gov/resources/publicDataStatement.jsp http://www.npdb-hipdb.hrsa.gov/resources/publicDataStatement... Users may copy the data, but they can't distribute it. > Not repost the dataset and only report, disclose or post data from the dataset in connection with statistical reporting or analysis that does not identify any individual or entity. http://www.npdb-hipdb.hrsa.gov/resources/publicData.jsp http://www.npdb-hipdb.hrsa.gov/resources/publicData.jsp
  - rsingel 15y ago
    As a reporter, I can only say that EULA makes me want to start digging in that database.
- VladRussian 15y ago
  > users of the new database are no longer allowed to combine information gleaned from the public database with any other publicly available information in a way that would identify doctors. the basic idea of DMCA - legal prohibition of the basic mental act of analysis - gets more and more widespread. And it seems that emotions, dreams, beliefs can be legally restricted in the same way. We aren't far from the situation when your [unlicensed] believing in the mormon or scientiological god or laughing at some matter/content that the rights-holder doesn't want to be laughed at can be considered an infringement.
sanderson1 15y ago
A can see both sides of this story. I do want to make one thing clear. I think any public information is just that—public. There shouldn't be restrictions on how it is used other than in purposely misleading ways, which is probably how this doctor viewed the release of the information related to his medical background. I think the reporter was completely justified in what he did. I don't believe he was on some kind of witch hunt, out to destroy this doctor's career. From the sounds of it, he's doing a pretty good job of that himself. On the flip-side, just because a doctor is sued for malpractice doesn't mean he's guilty of malpractice. I'm not familiar with the database, but if it doesn't list the outcomes of malpractice suits, it should. Simply saying a doctor has been sued 16 time for malpractice doesn't tell the full story. But in this case, him settling almost half of those cases, in my mind, does admit some level of guilt. Do I think the doctor is right in wanted the use of this information restricted? No. Do I think he deserved discipline from the Medical Board? Probably. Do I see how inaccurately presenting information can hurt innocent people? Absolutely. I'll go back to what I started with. Public is public. Just tell the full story. (which, by the way, I think was done fairly well in the article)
- knowtheory 15y ago
  One of the reasons i posted this is because i think it's worth shining the Streisand Effect on it. It's ridiculous that HHS is running scared because of a single doctor over the interests of everyone else. And it'll come out if Dr. Tenny's malpractice is out of the norm or not. You fight facts with facts, fighting facts with secrecy only makes us all poorer.
  - mkopinsky 15y ago
    Except that, as mentioned elsewhere in the comment thread, you often can't publicly respond to these kinds of allegations because doing so reveals Protected Health Information (PHI) and violates HIPAA.
    - knowtheory 15y ago
      Yeah, but one doesn't even need to resort to HIPAA laden facts about specific cases. Is Dr. Tenny out of the norm for malpractice suits? Are most cases settled out of court? What's the norm for settling, is it the Dr's wishes, or the insurance company's? Did the various hospitals/institutions involved have anything to say on Dr. Tenny's tenure working there? There's a lot of information to be had that doesn't speak to specific patients.
scott_s 15y ago
Arvind Narayanan (who is also on HN as randomwalker) has published papers and given many talks about this fundamental concept: "the level of anonymity that consumers expect—and companies claim to provide—in published or outsourced databases is fundamentally unrealizable." It sounds like this is an example of that principle. It's not feasible for the public database to be both useful and preserve complete anonymity of the doctors. You can check out much more from his two websites: http://randomwalker.info/ http://randomwalker.info/ and http://33bits.org/ http://33bits.org/
- knowtheory 15y ago
  Here's the thing though, these are people who are engaged in a publicly regulated service. All the data about the legal actions are filed in public courts. States individually maintain their own databases of this information. The only thing the federal government is doing is aggregating the data into a single source. Every single step involved here is public, but for whatever reason the federal government is trying to claim that this data isn't to be used for public purposes. What right do doctors in these instances have to privacy in their public practice?
  - MartinCron 15y ago
    If the data involved here is public at every step, save for aggregation and distribution, let's hope another entity steps in to take on this role.
- randomwalker 15y ago
  Thanks for the mention. Unfortunately, all too often regulators and Government agencies take the wrong lessons from de-anonymization -- remove data altogether, try to ban de-anonymization, etc. [1] I'm actually visiting D.C. right now with my policy hat on. In this case, I think we should be having a conversation about whether doctors' right to privacy is more important than public interest and patient safety. Ironically, a major reason why medical practitioners are often against public data release/reviews etc is apparently because they cannot publicly refute allegations or bad reviews, which is in turn because of patient privacy. Sometimes it feels like a morass of bad laws with unintended consequences. [1] Recent proposed changes to HIPAA do exactly that, without even an exception for research.
radtad 15y ago
As an aside: HealthGrades, a health care ratings site, seems to think a certain Dr. Robert T. Tenny, MD from Kansas is clean as a whistle: http://www.healthgrades.com/physician/dr-robert-tenny-xt5b4/background-check http://www.healthgrades.com/physician/dr-robert-tenny-xt5b4/...
- mkopinsky 15y ago
  Has anyone ever found value in these sites? I have tried to use them to look for a doctor or the like and have invariably found them to be total junk.
deleted 15y ago
[deleted]
nickand 15y ago
I got a nose job and now I can't breath as well. Of course there was a risk, but if I would have known it would be this bad I never would have done it. The doctor did everything he could to reassure this wouldn't happen before the operation. Now I am having a very difficult time figuring out what if anything I can do medically and legally. My life is very different. Doctors should not get anonymity. Their job is too crucial. I'm not dead, but my life will never be the same. Anything that could have changed that would have made a huge difference in my life. Also, if you're wondering the doctor was in Beverly Hills and fairly famous. This was no back alley procedure. At the moment I really feel like my whole world collapsed and with the way we treat doctors I feel like no one is on my side.

120 points by knowtheory 15y ago

The headline is technically true, but not very accurate; the database has since been brought up, but as the article states: > Nov. 9 - HRSA restored public access to the database, but as many reports have noted, it comes with a major caveat. According to the website, users of the new database are no longer allowed to combine information gleaned from the public database with any other publicly available information in a way that would identify doctors. Or in other words, the government is now trying to tell the public -- including the press -- what it’s allowed to do with publicly available information.

tantalor 15y ago
Looks like the NPDB people have added an EULA you must agree to before accessing the database. > In order to access the [Public Use Data File], users will now be asked to review and agree to a Data Use Agreement (DUA) that spells out specifics of how the data provided in the PUF may be used in accordance with the law. http://www.npdb-hipdb.hrsa.gov/resources/publicDataStatement.jsp http://www.npdb-hipdb.hrsa.gov/resources/publicDataStatement... Users may copy the data, but they can't distribute it. > Not repost the dataset and only report, disclose or post data from the dataset in connection with statistical reporting or analysis that does not identify any individual or entity. http://www.npdb-hipdb.hrsa.gov/resources/publicData.jsp http://www.npdb-hipdb.hrsa.gov/resources/publicData.jsp
- rsingel 15y ago
  As a reporter, I can only say that EULA makes me want to start digging in that database.
VladRussian 15y ago
> users of the new database are no longer allowed to combine information gleaned from the public database with any other publicly available information in a way that would identify doctors. the basic idea of DMCA - legal prohibition of the basic mental act of analysis - gets more and more widespread. And it seems that emotions, dreams, beliefs can be legally restricted in the same way. We aren't far from the situation when your [unlicensed] believing in the mormon or scientiological god or laughing at some matter/content that the rights-holder doesn't want to be laughed at can be considered an infringement.

sanderson1 15y ago

A can see both sides of this story. I do want to make one thing clear. I think any public information is just that—public. There shouldn't be restrictions on how it is used other than in purposely misleading ways, which is probably how this doctor viewed the release of the information related to his medical background. I think the reporter was completely justified in what he did. I don't believe he was on some kind of witch hunt, out to destroy this doctor's career. From the sounds of it, he's doing a pretty good job of that himself. On the flip-side, just because a doctor is sued for malpractice doesn't mean he's guilty of malpractice. I'm not familiar with the database, but if it doesn't list the outcomes of malpractice suits, it should. Simply saying a doctor has been sued 16 time for malpractice doesn't tell the full story. But in this case, him settling almost half of those cases, in my mind, does admit some level of guilt. Do I think the doctor is right in wanted the use of this information restricted? No. Do I think he deserved discipline from the Medical Board? Probably. Do I see how inaccurately presenting information can hurt innocent people? Absolutely. I'll go back to what I started with. Public is public. Just tell the full story. (which, by the way, I think was done fairly well in the article)

knowtheory 15y ago
One of the reasons i posted this is because i think it's worth shining the Streisand Effect on it. It's ridiculous that HHS is running scared because of a single doctor over the interests of everyone else. And it'll come out if Dr. Tenny's malpractice is out of the norm or not. You fight facts with facts, fighting facts with secrecy only makes us all poorer.
- mkopinsky 15y ago
  Except that, as mentioned elsewhere in the comment thread, you often can't publicly respond to these kinds of allegations because doing so reveals Protected Health Information (PHI) and violates HIPAA.
  - knowtheory 15y ago
    Yeah, but one doesn't even need to resort to HIPAA laden facts about specific cases. Is Dr. Tenny out of the norm for malpractice suits? Are most cases settled out of court? What's the norm for settling, is it the Dr's wishes, or the insurance company's? Did the various hospitals/institutions involved have anything to say on Dr. Tenny's tenure working there? There's a lot of information to be had that doesn't speak to specific patients.

scott_s 15y ago

Arvind Narayanan (who is also on HN as randomwalker) has published papers and given many talks about this fundamental concept: "the level of anonymity that consumers expect—and companies claim to provide—in published or outsourced databases is fundamentally unrealizable." It sounds like this is an example of that principle. It's not feasible for the public database to be both useful and preserve complete anonymity of the doctors. You can check out much more from his two websites: http://randomwalker.info/ http://randomwalker.info/ and http://33bits.org/ http://33bits.org/

knowtheory 15y ago
Here's the thing though, these are people who are engaged in a publicly regulated service. All the data about the legal actions are filed in public courts. States individually maintain their own databases of this information. The only thing the federal government is doing is aggregating the data into a single source. Every single step involved here is public, but for whatever reason the federal government is trying to claim that this data isn't to be used for public purposes. What right do doctors in these instances have to privacy in their public practice?
- MartinCron 15y ago
  If the data involved here is public at every step, save for aggregation and distribution, let's hope another entity steps in to take on this role.
randomwalker 15y ago
Thanks for the mention. Unfortunately, all too often regulators and Government agencies take the wrong lessons from de-anonymization -- remove data altogether, try to ban de-anonymization, etc. [1] I'm actually visiting D.C. right now with my policy hat on. In this case, I think we should be having a conversation about whether doctors' right to privacy is more important than public interest and patient safety. Ironically, a major reason why medical practitioners are often against public data release/reviews etc is apparently because they cannot publicly refute allegations or bad reviews, which is in turn because of patient privacy. Sometimes it feels like a morass of bad laws with unintended consequences. [1] Recent proposed changes to HIPAA do exactly that, without even an exception for research.

radtad 15y ago

As an aside: HealthGrades, a health care ratings site, seems to think a certain Dr. Robert T. Tenny, MD from Kansas is clean as a whistle: http://www.healthgrades.com/physician/dr-robert-tenny-xt5b4/background-check http://www.healthgrades.com/physician/dr-robert-tenny-xt5b4/...

mkopinsky 15y ago
Has anyone ever found value in these sites? I have tried to use them to look for a doctor or the like and have invariably found them to be total junk.

deleted 15y ago

[deleted]

nickand 15y ago

I got a nose job and now I can't breath as well. Of course there was a risk, but if I would have known it would be this bad I never would have done it. The doctor did everything he could to reassure this wouldn't happen before the operation. Now I am having a very difficult time figuring out what if anything I can do medically and legally. My life is very different. Doctors should not get anonymity. Their job is too crucial. I'm not dead, but my life will never be the same. Anything that could have changed that would have made a huge difference in my life. Also, if you're wondering the doctor was in Beverly Hills and fairly famous. This was no back alley procedure. At the moment I really feel like my whole world collapsed and with the way we treat doctors I feel like no one is on my side.