Clarifying more research realities

No need to fearmonger the latest from RFK Jr….

No, I haven’t read Secretary Kennedy’s latest quotes, but I’ve read a bazillion social media posts about how he is invading privacy and going to put parents into re-education camps as part of his goal of finding the cause of autism. Here, I’m going to clarify the truth about some myths that are part of this latest conspiracy.

Research of electronic medical records

This has been going on for DECADES. Before the clinical settings that most of us accessed utilized EMRs, analysis of Medicare, Medicaid, and VA data was COMMON. Literally whole fields used this approach. The only new aspect of this is that EMRs have finally been modernized to the point that they can be used for research… and this has been going on for several years now too.

HIPPA

If you thought HIPPA created a wall of privacy around your clinical data, you were mistaken. On this topic, I strongly recommend reading the extensive work of Twila Brase, President or Citizens Council on Health Freedom). She has an entire book on this. So no, Mr. Kennedy’s proposal is not a violation of HIPPA.

Registries

Again, nothing new. Cancer registries have been in place for DECADES. While “surveillance” is a scary sounding word, that is the public health purpose of registries. They are used for tracking the occurrence of disease, and to see if they are increasing, which might highlight the need for additional resources, screening, prevention, etc. Where do you think numbers like “cancer affects one in xxxx” come from?

Is this a violation of informed consent? That’s an interesting element of cancer registries – most cancer patients have no idea that there information is in a registry. However, it is de-identified. You cannot access individual-level data from a cancer registry without ethical board approval… and even then, it will be de-identified (no identifying information other than age and maybe year of birth).

Cell phone records

If all this time you thought your cell phone activity was private, I have a bridge to sell you. Is informed consent iffy? Probably. Tracking of activity was a commonly used analytical approaching during COVID-19. But again, nothing new to see here.

Then how will the actual research work?

You do not need to worry about some punk teenager or other deadbeat living in his mom’s basement raiding all these data sources and invading your privacy. In order to access most of the data sources mentioned above, an individual researcher needs ethical board approval (aka “IRB approval”). That isn’t handed out like candy.

States maintain vaccination records. Those cannot be linked to electronic medical records without specific identifiers. Those are not given to individual researchers, so some external party will do the integration and then strip off the identifiers prior to providing the data.

In conclusion…

Finding the cause of disease / disorder is important. It can provide insight into prevention and/or treatment. There have been plenty of advances in public health in the last century by simply identifying causal factors of disease. This does not add to the stigma of disease or make someone a pariah for having a disorder. We don’t accept people less if we know what caused their disorder.