Health data is among the most sensitive personal data out there. Yet, without the ability to share it, medical research would be much harder. Here, we look at the different ways in which researchers are able to access health data in the US.
What actually is health data?
Within the US, health data is defined by the Health Insurance Portability and Accountability Act or HIPAA. Its definition is rather unwieldy because it related to health insurance providers and clearinghouses:
“Health Information: Any information, whether oral or recorded in any form or medium, that is created or received by a health care provider, health plan, public health authority, employer, life insurer, school or university, or health care clearinghouse; and relates to the past, present, or future physical or mental health or condition of an individual; the provision of health care to an individual; or the past, present, or future payment for the provision of health care to an individual.”
Put more simply, it’s any data related to your past, current or future physical and mental health, including medical conditions and diagnoses, treatments, and doctors notes.
Why is it so valuable for research?
Without access to health data, medical research would be nearly impossible. Researchers rely on health data to drive clinical trials, to identify potential side effects, and much much more. But as we shall see, there are different grades of health data available for research.
Anonymized data
The lowest grade of data available is anonymized health data. Here, every possible identifying characteristic has been removed from the data to ensure it is impossible to identify whose data it was. That means the data is adjusted and made less individual by adding noise or removing precision. For example, a patient’s age might be given as 30-40, their location as California, their weight as 180-220lbs, etc. This data is of real use to researchers, but the lack of precision is sometimes a problem.
De-identified data under HIPAA
HIPAA defines a less strict form of anonymization known as de-identification. Here, all the most obvious identifiers are removed from the data, but all the rest of the data is unaltered. HIPAA allows this de-identified health information to be freely shared. This provides a really good source of data for researchers. However, there are still some limitations, especially because such data is typically just a snapshot in time.
The case for sharing full data
The best research data is when a patient agrees to share all of their data directly with the researchers. This can only be done if a patient freely provides their informed consent for the data sharing. The researchers can then access all the health data and
The power of patient-recorded outcome data
The greatest value of all for researchers comes when they can have a 2-way conversation with the patients. This allows them to ask specific questions relating to treatments, outcomes, changes in condition, etc. This patient-recorded outcome data is truly invaluable when it comes to researching rarer conditions.
We work closely with firefighters, who are susceptible to a variety of rare cancers and other medical conditions. One of the aims of our Health Data Platform is to assist with research into these uncommon conditions. Users can choose to donate their full data or just allow their de-identified data to be shared. Either way, they will help future generations of firefighters avoid the terrible toll of ill-health and early death.
