Is it All Really Confidential?
Did you know that your health data is more valuable than you are?
We are not talking about your demographics; such as: name, date of birth, social security number, insurance number, home address, etc. We are referring to your personal health data. What are your symptoms? What is your diagnosis? What was your treatment? How many medications do you take? Did you have any side effects? How long did you stay in the hospital? How many doctor’s visits did you have in the past 6-12 months? How much does it cost to treat you? This is what truly matters to insurers, hospitals, medical researchers and the government. All of this information is being gathered via electronic medical records and through your social media use. Google searches, Twitter, and Facebook posts are constantly being analyzed for trends. For instance, it was widely reported in the national news last winter that Google searches were used to help track the spread of the flu.
We all know that computers are great at analyzing vast sums of data. Your medical data is no different. Since most of your data is now computerized, rather than on paper, it is easier than ever before to use your data for analysis. While your personal identification is removed from the data, your health problems and subsequent treatment are a valuable commodity. This is both good and bad. Obviously it is bad because it feels like big brother is infringing on your private healthcare decisions. This is true. You cannot hide the fact that your data is being used for more than just your personal healthcare. Your data is being pooled with other patients from around the country who meet similar characteristics to establish treatment protocols. Your treatment is then be compared against this protocol to see if your treatment plan ‘fits’ within the expected normal. Your data is also being used to help determine if your healthcare provider meets certain governmental benchmarks for reimbursement and quality of care.
As stated above, this is not all bad. Hospitals are able to identify and track infections and medical and surgical complications much easier (and possibly earlier) with this data. Pooling of large data can also lead to the discovery of previously unknown prescription drug interactions, prescription drug side effects, procedural complications, and potential treatments for rare diseases. By pooling a large sum of data from multiple sources, researchers are now able to gather much more information than would otherwise be available; especially for rare diseases and experimental treatments. An example of this are the recent infections noted from a specific kind of endoscopy. Analysis of the data revealed that it was more than just a random event, leading to the recall and withdrawal of the offending duodenoscope from the market. Pooling of data also assists in maintaining general public health. For example, during a disease epidemic (such as the flu) researchers are able to track the spread/containment and treatment of the disease, potentially saving lives. Large data also facilitates medical research. By analyzing the data, researchers can determine the how often a specific disease occurs and how many people have it (incidence and prevalence), side effects of treatment, efficacy of treatment and other variables. This will help them to design better and more specific studies, potentially accelerating a new treatment or likewise preventing a harmful treatment from reaching the market.
As you can see, there is a trade off. We can completely understand not wanting anyone else to have their eyes on your data. Unfortunately, outside of paying cash for your medical care, we do not know of any way to prevent your data from being completely sealed off from any kind of analysis. While you may object to your data being used, consider that the use of your health information can bring great value to the field of medicine when pooled with the data of other patients. This can not only lead to the discovery of new cures, but can also increase patient safety. Who knows, someday the results may even wind up helping you or someone you know and love.
- Gill R, Borycki EM. The Use of Case Studies in Systems Implementations Within Health Care Settings: A Scoping Review. Stud Health Technol Inform. 2017;234:142-149. PubMed PMID: 28186031