The Case for Patient-Controlled Data Sharing
Patient Privacy Rights leader Deborah Peel, M.D., recently penned a commentary attacking myths that personal health data is being acquired legally and ethically. Brian Baum, CEO at vitaTrackr Inc., which offers a platform for businesses to exchange patient-approved health data, counters that there is real value to patient data and that patients can have control over who gets it. Here is his response to Dr. Peel:
Patient Privacy Rights leader Deborah Peel, M.D., recently penned a commentary attacking myths that personal health data is being acquired legally and ethically. Brian Baum, CEO at vitaTrackr Inc., which offers a platform for businesses to exchange patient-approved health data, counters that there is real value to patient data and that patients can have control over who gets it. Here is his response to Dr. Peel:
Dr. Peel,
I believe the correct answer is consumer control of their health information. You say: Just ask anyone you know if they ever agreed to the hidden use and sale of sensitive personal information about their minds and bodies by corporations or research businesses for analytics, sales, research or any other use. The answer is no.
You assume that the unilateral response of 310+ million people is an automatic no. I would respectfully suggest that if you rephrased the question, the answer may change:
* If, your personal health information and that of your family could be analyzed to provide an earlier indication of health issues, changes/trends in health status, or identify courses of treatment that are more likely to benefit you and add years to your life, or quality to those years, would you share your health information?
* Or: If your personal health information could be aggregated with others and the collective results be used to identify new treatments, more effective treatments for some of the most serious medical conditions--which you may experience at some point in your life and as a result of this research improve the treatment and outcome of those conditions--would you share your health information?
* Or: If you personally purchased a health monitoring device--perhaps an activity monitor--and it was possible to have your health data automatically integrated with that device so that you could see in near real time that your increase in activity was improving your blood pressure, cholesterol values, or blood sugar levels--would you authorize the release of your personal health data to the provider of the device/application?
Are there risks in sharing personal health information? Obviously yes. However, that should not mean that we unilaterally limit the incredible potential to link personal health information to the management and monitoring of personal health, or the aggregation of personal health information to advance the practice of medicine.
So, I believe the correct answer is consumer choice/consumer control over their health information. What we in the industry must do, is to provide an environment where individual consumers have control over their health information and can easily indicate where/when/how they approve of the sharing of their personal health information.
Fortunately for the health industry, these challenges have already been addressed and resolved in many other industries. The future of health care is bright and the future is data-based.
Dr. Peel,
I believe the correct answer is consumer control of their health information. You say: Just ask anyone you know if they ever agreed to the hidden use and sale of sensitive personal information about their minds and bodies by corporations or research businesses for analytics, sales, research or any other use. The answer is no.
You assume that the unilateral response of 310+ million people is an automatic no. I would respectfully suggest that if you rephrased the question, the answer may change:
* If, your personal health information and that of your family could be analyzed to provide an earlier indication of health issues, changes/trends in health status, or identify courses of treatment that are more likely to benefit you and add years to your life, or quality to those years, would you share your health information?
* Or: If your personal health information could be aggregated with others and the collective results be used to identify new treatments, more effective treatments for some of the most serious medical conditions--which you may experience at some point in your life and as a result of this research improve the treatment and outcome of those conditions--would you share your health information?
* Or: If you personally purchased a health monitoring device--perhaps an activity monitor--and it was possible to have your health data automatically integrated with that device so that you could see in near real time that your increase in activity was improving your blood pressure, cholesterol values, or blood sugar levels--would you authorize the release of your personal health data to the provider of the device/application?
Are there risks in sharing personal health information? Obviously yes. However, that should not mean that we unilaterally limit the incredible potential to link personal health information to the management and monitoring of personal health, or the aggregation of personal health information to advance the practice of medicine.
So, I believe the correct answer is consumer choice/consumer control over their health information. What we in the industry must do, is to provide an environment where individual consumers have control over their health information and can easily indicate where/when/how they approve of the sharing of their personal health information.
Fortunately for the health industry, these challenges have already been addressed and resolved in many other industries. The future of health care is bright and the future is data-based.
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