News is full of stories each week about yet another personal data breach, theft, or questionable use of information. The truth is, this is your data and, depending on your age, this collection started at birth and, in some cases, maybe even earlier. Do you want this to be broadly shared? Before you answer, think about what that might mean for you.
Let's consider the case of a fictitious middle-aged person who, like most of us, would never share anything about his or her medical information. Now, let's consider the fact that all of his or her medical records have been recorded in some form since birth.
Our person, let us call her "Heather" was born to a middle-aged woman who, through the advice of her doctor, had some prenatal genetic screening done while Heather was still in utero. Heather was born a few months later at a large teaching and research hospital in picture-perfect health, just like the genetic screening predicted.
As the years progressed, Heather had excellent healthcare, the required immunizations, and annual check-ups. Heather led a relatively healthy life. Her family moved and Heather went off to college, and her medical services were delivered by over a dozen different practitioners through the years. Unfortunately, her medical records were stored in different formats - paper folders in a file cabinet at a small office and state-of-the-art electronic medical record (EMR) applications. Occasionally, her medical information was shared between providers via fax.
Heather was lucky to have had providers who were diligent in delivering quality health care, performing all the recommended tests as part of her wellness visits. Notwithstanding the odd ailment here or there, life was good.
Now let's envision a different world, a world where all medical information related to Heather was standardized, records were centralized and publicly available for those with valid reasons that were morally and ethically beneficial to the community at large. Would this change Heather's view of my data as being private?
Long before Heather was born, her mother was prescribed a couple of medications during pregnancy all were deemed safe at the time. Heather's medical information reflected her pre-birth exposure to the medications. In addition, her DNA and genome are also attached to her profile.
Today's Heather might have no knowledge of her mother using these medications. Imagine that Heather later was to develop symptoms tied to what were once thought to be safe medications. Now imagine that pharmaceutical and research organizations had information tying Heather to the use of these medications; it could be a life-changer for her. Consent could have been provided for de-identification of Protected Health Information, as required by HIPAA, and researchers could have contacted Heather with any adverse effects that they discovered.
This simple example shows how sharing medical information can benefit researchers as well as the general population. Advancing the way we as a society think about sharing our medical records is what may help the population to be informed years in advance before people experience any potential issues.
Sharing medical records not only enhances an individual's healthcare but also may result in lower health care costs and less extensive testing that end up equating to better outcomes for Heather and even the population at large. Today, Heather could benefit from the genome data of some of the most well-known genes, such as those that are infamous for mutating or even elevating the risk of breast and/or ovarian cancer like BRCA1, BRCA2, and PALB2, among others. Having her genome available to researchers could play a key role in her healthcare, and now she can be informed to take proactive steps. Having her medical history may also play a key part in her medical outcomes and risks. Shared EMR allows continuum of care across the spectrum of care and could contribute to a higher quality of life.
Where and how data will play a part in medical research in the next decade is unknown. If we look back even just a decade ago, the pace of progress and impact we enjoy today was unknown. Heather is the beneficiary of that research in improving her daily life by making the choice to share her medical information, and she is contributing to the wellness of others by sharing her information publically.
Healthcare data, HIPAA aside, is saving lives, but only if used responsibly and made appropriately available only to the people who need it.
After you have thought this through, think about these questions:
What could you do to help Heather and others? Well, you might be surprised as to just how easy it might be to leverage data you already have. Advancements in technology mean providing insight to Heather and others and that is something you should consider. It is up to you on how to take that next step.
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