Announcement

Collapse
No announcement yet.

Patient data for medical research

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Patient data for medical research

    Hi
    so I have been asked to advise in the research and development of a medical device for remote patient monitoring
    the developers ( who are non medical) are hoping to use this device not only in the intended role but also use it as a pool of ( patient database information like vitals , medical conditions/ medications etc and these are outside the US patients ) which they feel can be useful for medical research and will be valuable to many academic institutions and / or pharmaceutical companies

    I am completely lost here , I don’t understand their insistence that somehow such information can be valuable to researchers. And if they get a database of this information for tens of thousands of patients that is a potential goldmine ?
    What am I missing here ? how is this information valuable?
    Let’s leave aside the legal issues I’ll discuss them with a lawyer

  • #2
    bump

    Comment


    • #3
      Yes. Patient data is big money. Even when fully anonymized. Customers include Pharma, insurance companies, and more.

      many of the cheaper EMRs’ business model OS not selling EMR subscriptions. It is selling your practice data. Meaning the patient data.

      it is with many millions. The larger the data set, the more robust and searchable, and the more unique the package of information, the more it is worth. Especially if you can correlate it to clinical information.

      it can generate millions.

      Comment


      • #4
        I’m with you, I don’t see academics paying very much, if anything at all, for this data.

        Comment


        • #5
          Originally posted by Notsobad View Post
          Yes. Patient data is big money. Even when fully anonymized. Customers include Pharma, insurance companies, and more.

          many of the cheaper EMRs’ business model OS not selling EMR subscriptions. It is selling your practice data. Meaning the patient data.

          it is with many millions. The larger the data set, the more robust and searchable, and the more unique the package of information, the more it is worth. Especially if you can correlate it to clinical information.

          it can generate millions.
          Can you please elaborate what kind of data specifically?
          Thanks

          Comment


          • #6
            Correct. Raw data has to get processed. Large EMR companies have for example, diagnoses prescribing behavior, and a whole lot more.

            There are middlemen companies that hire nurses and curate data sets and package it for the client. Usually they will pay for a project asking a specific question. Maybe drug company X wants to know how often you check LDL? Are you getting it before 70? Do you use superstatin? Did usage in your region go up after a certain sales initiative?

            my understanding is that Pharma is/are the biggest clients. I was always skeptical, but there are buyers.

            the buzzword is HEOR. Health economics and outcomes research.

            https://www.definitivehc.com/resourc...-research-heor

            https://www.businesswire.com/news/ho...AndMarkets.com

            I am not saying I understand the particulars of how to make your data set more valuable, but what you described looks like they are trying to create a marketable data set. The bigger the better. You do not need IRB and informed consent for aggregated data stripped of patient identification. Plus, when people install their app etc for the medical device, I am sure they will be agreeing to everything somewhere in the fine print.

            Good luck, and see if you can get royalties on top of your consulting fees.

            Comment


            • #7
              Originally posted by Notsobad View Post
              Correct. Raw data has to get processed. Large EMR companies have for example, diagnoses prescribing behavior, and a whole lot more.

              There are middlemen companies that hire nurses and curate data sets and package it for the client. Usually they will pay for a project asking a specific question. Maybe drug company X wants to know how often you check LDL? Are you getting it before 70? Do you use superstatin? Did usage in your region go up after a certain sales initiative?

              my understanding is that Pharma is/are the biggest clients. I was always skeptical, but there are buyers.

              the buzzword is HEOR. Health economics and outcomes research.

              https://www.definitivehc.com/resourc...-research-heor

              https://www.businesswire.com/news/ho...AndMarkets.com

              I am not saying I understand the particulars of how to make your data set more valuable, but what you described looks like they are trying to create a marketable data set. The bigger the better. You do not need IRB and informed consent for aggregated data stripped of patient identification. Plus, when people install their app etc for the medical device, I am sure they will be agreeing to everything somewhere in the fine print.

              Good luck, and see if you can get royalties on top of your consulting fees.
              Your detailed reply is much appreciated

              Comment


              • #8
                Make sure you talk to lawyers where the patients are, not just US lawyers. There are a lot of places that are more restrictive on data handling and processing.

                Comment

                Working...
                X