Posted by & filed under Business Intelligence, business models, data mining, healthcare.

Description: A Pfizer-led group plans to buy access to hospital records in New York State to help identify and enroll participants in drug studies


Date: Nov 3, 2011

Pharmaceutical companies can easily spend years—and more than $1 billion—bringing a new drug to market, in part because they can’t find enough patients to do the required testing of the compound. Such delays can cost up to $1 million a day, fritter away valuable months of patent protection, and allow rival developers to catch up. One remedy: pay hospitals to sift through the health records of their patients.  READ REST OF STORY

Questions for discussion:

  1. What are the ethical issues surrounding the data mining of health records?
  1. What limitations if any would you put in place to control the data-mining of health records?

6 Responses to “Drugmakers Mine Data for Trial Patients”

  1. Andrew Douglas

    Depending how this is handled this could be a massive invasion of privacy for the patients. As stated in the article, just because a person’s name and social security number no longer appears on the record, does not mean they are no longer identifiable. Even if things work out exactly as planned, now people will be bombarded with companies encouraging patients to try out their new drugs every time they go to the doctor. To me this seems like an entire new form of telemarketing, only more annoying and frustrating because it is done in person rather than over the phone.

    The records that can be searched for this should be limited to those who have knowingly given consent for their information to be used in this way. People should also be aware that the hospitals are profiting from selling their private information, information that could potentially be quite personal or embarrassing. It might not be entirely unreasonable to expect that the patients whose information is being sold off receive some nominal form of compensation as the hospitals are receiving large sums of money when it is really the patients who have to give up their privacy and deal with the nuisance of these companies.

  2. Sydney D

    Ethically, data mining for hospital records would definitely invade the privacy of personal information. It is not morally right for pharmaceutical companies to take medical information from a hospital to benefit their spending needs. Without the consent of the individual, personal records should not be looked at by anybody other than the doctor. They say that names, addresses and such are not released but they say that they ask for consent but how do they do this without personal information to contact the individual? And what happens with the hospital records once the drug company is done with them, are they disposed of correctly? These are some other issues that arise.
    On the other side, this could be a huge breakthrough for medical research since they are provided with so much more information instead of playing the guessing game with hypothetical situations. Somebody with a rare condition might qualify for a possible candidate for a new drug to cure his or her condition. Without patient information available to the drug companies this opportunity may not have ever been presented.

  3. Enoch Dugbatey

    Protecting people privacy is going to be the biggest obstacle to this great idea. But the benefit of this plan outweighs the privacy concerns so I would not put any limit in place to control the data -mining of health records. Through this plan its a win win for both drug makers, hospitals and patients.

  4. Kristen Schalin

    I think the biggest ethical issue surrounding the data mining of health records is the patient’s privacy. Personal data cannot be given without first consenting and achieving permission from the patient for their data to be released to a third party. Even though the data has been stripped of the patients name and social security number does not mean the patient isn’t in some other way identifiable. If this information gets into the hands of the wrong person, much damage could be done. These are very confidential records that do not need to be just shared with anyone and I believe most people would be very upset to know their information, even though stripped of name and social security number, was given out to any type of third party. Being chosen for these drug tests are suppose to be by choice, no? So letting a company go through all these records and then be allowed to contact these patients is quite the invasion of privacy. I agree with Andrew when he states this is getting frightfully close to another form of telemarketing. Data-mining of health records in my opinion should not be done. These companies that are looking for patients to participate in drug tests could communicate this with the hospitals and then clients that coincide with the requirements can then be made aware of the tests and if they choose to at their own discretion, sign up for these tests.

  5. Ellen H

    The biggest issue would definitely be privacy regarding the data mining of health records. People expect that their files will be confidential and “for their eyes only”. By allowing hospitals to comb through their records and identify patients, whom the drug people are then told who they are and where they are located, is a huge breach of security and privacy. Individual medical files for sure hold a lot of valuable information that drug companies would love to use, but at what point is their profit more important than our basic rights to privacy? So much of our lives is already tracked and recorded in many ways in many places. It’s one of the things that make identity theft so easy. I believe that if this idea was to go ahead, patients should be asked first if they would be like to be included in any screenings for possible drug trials for their condition(s). This way they know that their information is being accessed and have knowingly consented to it. Going through someone’s records, and then selling that information is a breach of our civil rights. Just because information is there, does not mean that large companies should be able to access it for their personal purposes.

  6. Bubba_34

    The ethical issue surrounding the data mining of health records is one of many. One of the reasons could be that it is a breach of a person’s constitutional right to have privacy (constitutional right is in the US). Also another argument could be that why is someone able to give out private and confidential information for a cash return. People go to the hospitals and doctors because they are sick and need help and in return there information is sold to some pharmaceutical company. Someone could ask, how much would the pharmaceutical companies have to pay for the doctors to test the patients without consent, to see if or how there new drug reacts. This way of pharmaceutical companies paying for collecting data in the hospitals records should not be allowed. They wouldn’t want people or their competitors looking through their records. Some of the limitations that I would place on the companies that wanted to do data mining on patient records, would be that they may be able to look up for the symptoms and signs they wanted but nothing else. What else I would allow to show up would be, the age, gender and weight. If then the companies were interested in the patients the should contact the hospitals or doctors and it would be up to the patient if they would like to continue.

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