Patientslikeme.com is an amazing effort regarding data sharing for the health community. See the TED video about the online service here. One amazing thing that the patientlikeme data gives us is faster information on a particular treatment than a clinical study can provide. The patientslikeme.com service collected data on ALS patients taking Lithium for example. The application was able to demonstrate that Lithium does not help ALS patients any more than those not taking Lithium and provided this information before a clinical trial was able to come to a conclusion. The clinical trial ended up showing the same results as patientslikeme.com was able to produce much earlier. Providing treatment success/failure rates faster helps patients and their families make more timely and well-informed treatment decisions. The patientslikeme service may also provide information on treatments that would never be available with a clinical study. For instance, there are many alternative treatments out there that would not have the funding to be tested. For instance, patientslikeme.com may provide information about the effectiveness of 5-htp in treating depression yet a clinical trial is not or may never be implemented to test 5-htp's effectiveness for the disorder.
patientslikeme.com has enormous potential1 to provide better, faster, and cheaper information than clinical trials on whether a treatment works or not. (I say potential because I see flaws in it's current state. For instance I joined and filled out a profile for my condition and it didn't allow me to select the prescription I am taking for it - although it listed others. This may lead to flawed data since it appears that I am not taking anything.)
Regardless of it's flaws - it is a very powerful data-sharing and forecasting tool and can be applied to other public challenges other than health care.
What was particularly impressive about this tool was the user interface and how it delivered unbiased, vast, and complex information very simply to the end user. One issue that could benefit from this in public administration is helping the public become more involved in the political process. In order for democracy to be successful it must have an educated populace that participates in the political process. An online service that collects a specific set data from those running for public office at the local, state, and national, even international level could allow individuals to see beyond the propoganda that typically diseminated about an individual. The data collected could be pre-set like with patientslikeme.com. For example, the data could show the education level, experience, political affiliation, for/against on issues, what election they are running for etc., percent of votes in previous elections etc. The key behind the service would be to engage citizens in the political process by providing them more clear information on candidates than they would otherwise have.
Thursday, September 29, 2011
The mixing of personal, professional, and private space
"The coming out stories of anonymous bloggers"
I agree with political blogger Jeanne Devon when she says, '"There are things that you know, or that you feel sort of in your heart of hearts, that you might not want to put out there in a public way" with your name attached, she said. "If people always spoke without filters, we'd learn a lot more."
I personally think it's unfortunate that we can't keep an anonymous persona online. Despite bloggers best attempts, the article discusses ways in which anonymous online identities may be exposed and why previous bloggers may decide to reveal their identities.
An attorney at the Electronic Frontier Foundation, Matt Zimmerman, who "advocates for the rights of anonymous speech" said that there is no 100% effective way to hide
due to a technological footprint. If technology itself doesn't expose someone courts can force people out of online anonymity. The requirements for doing so however are not yet clear. For instance, a court could determine that legal action filed against a blogger is enough to expose them but another court might require proof that the blogger defamed someone.
Like many others, Virginia Montanez or "Pittgirl" determined that she wanted to be the one to come out as her real self before someone else outed her real identity. Other bloggers choose to expose themselves like the famous Heather Armstrong of dooce.com. She states "I think if you're doing something anonymously you've got some issues going on...There's a reason that you're hiding." Despite Montanez initally choosing to be anonymous and Armstrong being public, they both have one thing in common - their controversial blogs got them fired from their jobs.
However, Armstrong says that the benefits regarding writing as herself outway the bad. She references the support she received from the online community when she suffered from postpartum depression. Likewise, political blogger Jeanne Devon said that she felt more support from her community after being outed.
The major takeaways from this article are:
1) Online anonymity is difficult to maintain
2) A public persona - by choice or by force - has both its benefits and consequences.
I agree with political blogger Jeanne Devon when she says, '"There are things that you know, or that you feel sort of in your heart of hearts, that you might not want to put out there in a public way" with your name attached, she said. "If people always spoke without filters, we'd learn a lot more."
I personally think it's unfortunate that we can't keep an anonymous persona online. Despite bloggers best attempts, the article discusses ways in which anonymous online identities may be exposed and why previous bloggers may decide to reveal their identities.
An attorney at the Electronic Frontier Foundation, Matt Zimmerman, who "advocates for the rights of anonymous speech" said that there is no 100% effective way to hide
due to a technological footprint. If technology itself doesn't expose someone courts can force people out of online anonymity. The requirements for doing so however are not yet clear. For instance, a court could determine that legal action filed against a blogger is enough to expose them but another court might require proof that the blogger defamed someone.
Like many others, Virginia Montanez or "Pittgirl" determined that she wanted to be the one to come out as her real self before someone else outed her real identity. Other bloggers choose to expose themselves like the famous Heather Armstrong of dooce.com. She states "I think if you're doing something anonymously you've got some issues going on...There's a reason that you're hiding." Despite Montanez initally choosing to be anonymous and Armstrong being public, they both have one thing in common - their controversial blogs got them fired from their jobs.
However, Armstrong says that the benefits regarding writing as herself outway the bad. She references the support she received from the online community when she suffered from postpartum depression. Likewise, political blogger Jeanne Devon said that she felt more support from her community after being outed.
The major takeaways from this article are:
1) Online anonymity is difficult to maintain
2) A public persona - by choice or by force - has both its benefits and consequences.
Friday, September 16, 2011
Code 2.0 - Applying Lessig's Four Constraints
A story in the The Telegraph, a UK newspaper, recounts a story of a man, Dave Moorhouse, whose microchipped Jack Russell terrier was stolen. Although the microchip company knows the dog's location, Moorhouse is prevented from finding the dog's location due to the Data Protection Act. You can read the story here: http://www.telegraph.co.uk/family/pets/8015956/Dog-owner-prevented-from-finding-microchipped-pet-under-Data-Protection-Act.html.
Moorhouse argues to the microchip provider that the reason he microchipped his pet was to find the pet if it was ever lost or stolen. When they refused to release the dog's whereabouts, Moorhouse took the case to court but the court upheld the decision to not release the location due to the Data Protection Act. The microchip provider stated that Moorhouse has the option of reporting the theft to the police and the police "can demand the details of the dog's location be disclosed, where appropriate". However, Moorhouse did so and the police concluded that "there was no criminal case to answer".
Lessig illustrates that four modalities regulate cyberspace: law, norms, the market, and architecture. The values that are in conflict here are protecting data and protecting dog ownership. The modalities that are in conflict in this situation are the law, norms, and architecture. The norm would uphold that Moore owns his dog and when someone else takes his dog it is considered stealing. The law states that although the microchip company knows where Moore's dog is, they are prevented from identifying the location due to the Data Protection Act. Finally, architecture, or the technology of the microchip, is at play because only the microchip company has access to the whereabouts of Moore's dog once reported to them. It would be a different scenario if Moore could also have access to the whereabouts of his dog perhaps through online access to a tracking service provided by the microchip.
I think that Moore could have seen a solution to his problem with the current constraints in place. I do not understand why the police concluded that "there was no criminal case to answer". If they concluded that there was criminal activity they could have forced the microchip company to release the dogs whereabouts.
Regardless, an alternative approach for addressing the problem would be to enhance the microchip technology by allowing real-time tracking of one's pet. In the situation with Moorhouse, what prevented him from knowing the location of his dog was that the "new owners" (or as I would call them, thieves) reported to the microchip company their location and then the company was obligated to protect that location. The microchip company would not have known the dogs location had it not been reported to them. However, if the microchip company provided a tracking GPS service, the owner could always know the location of their dog and the Data Protection Act would not prevent release of this data. The only change that would be needed for this solution would be to the architecture/technology of the microchip which would then provide owners protection from lost or stolen dogs while still protecting data according to the Data Protection Act.
Lessig cites Polk Wagner who argues that the "interaction among these modalities is dynamic". (p130) This means that changing the constraints of any one of them may affect the others. In my example, changing the technology of the microchip to provide GPS tracking may affect the law or market. The Data Protection Act may be changed to include information about GPS tracking. Or, by adding the GPS tracking technology, the demand for microchipping may skyrocket and subsequently the manufacturers of microchips may hike the price so that few can afford the service - which could exasperate the problem of stolen and lost dogs.
Moorhouse argues to the microchip provider that the reason he microchipped his pet was to find the pet if it was ever lost or stolen. When they refused to release the dog's whereabouts, Moorhouse took the case to court but the court upheld the decision to not release the location due to the Data Protection Act. The microchip provider stated that Moorhouse has the option of reporting the theft to the police and the police "can demand the details of the dog's location be disclosed, where appropriate". However, Moorhouse did so and the police concluded that "there was no criminal case to answer".
Lessig illustrates that four modalities regulate cyberspace: law, norms, the market, and architecture. The values that are in conflict here are protecting data and protecting dog ownership. The modalities that are in conflict in this situation are the law, norms, and architecture. The norm would uphold that Moore owns his dog and when someone else takes his dog it is considered stealing. The law states that although the microchip company knows where Moore's dog is, they are prevented from identifying the location due to the Data Protection Act. Finally, architecture, or the technology of the microchip, is at play because only the microchip company has access to the whereabouts of Moore's dog once reported to them. It would be a different scenario if Moore could also have access to the whereabouts of his dog perhaps through online access to a tracking service provided by the microchip.
I think that Moore could have seen a solution to his problem with the current constraints in place. I do not understand why the police concluded that "there was no criminal case to answer". If they concluded that there was criminal activity they could have forced the microchip company to release the dogs whereabouts.
Regardless, an alternative approach for addressing the problem would be to enhance the microchip technology by allowing real-time tracking of one's pet. In the situation with Moorhouse, what prevented him from knowing the location of his dog was that the "new owners" (or as I would call them, thieves) reported to the microchip company their location and then the company was obligated to protect that location. The microchip company would not have known the dogs location had it not been reported to them. However, if the microchip company provided a tracking GPS service, the owner could always know the location of their dog and the Data Protection Act would not prevent release of this data. The only change that would be needed for this solution would be to the architecture/technology of the microchip which would then provide owners protection from lost or stolen dogs while still protecting data according to the Data Protection Act.
Lessig cites Polk Wagner who argues that the "interaction among these modalities is dynamic". (p130) This means that changing the constraints of any one of them may affect the others. In my example, changing the technology of the microchip to provide GPS tracking may affect the law or market. The Data Protection Act may be changed to include information about GPS tracking. Or, by adding the GPS tracking technology, the demand for microchipping may skyrocket and subsequently the manufacturers of microchips may hike the price so that few can afford the service - which could exasperate the problem of stolen and lost dogs.
Subscribe to:
Comments (Atom)