https://www.healthmgttech.com/congress-holds-key-achieving-improved-healthcare-better-use-data
Congress wants to get in on the act. Consumers owning and controlling their health data is a coming attraction - pushed by public policy and driven by tech innovators who see this as a new opportunity for making cash. But what about the consumer?
HIPAA in its current form allows consumers to get a 'COPY' of their health record. A 'COPY'.....not the data. A 'COPY' in the current system typically means a paper or pdf 'COPY' of part of your record.
The proposal coming out of congress is to give consumers access to data stored and managed by clearinghouses. A clearinghouse is a business associate that provides services that specifically manage the claims adjudication process., usually ensuring the providers of health care services are paid for the services rendered to a patient.
So why would consumers want access to their claims data? They may want a chronological inventory of all their health care services for historical purposes. They may want to track and monitor payment processes for fraud or overpayment. They may want to access certain episodes of care to understand their own utilization patterns....but most likely claims data adds very little value to a patient data set.
In fact, claims data is dirty, it is not easily mapped to concepts that can be used in data science and claims data requires multiple data cleansing and normalizing processes to create episodic context on utilization patterns. Claims data is very useful for benchmarking, pattern recognition related to utilization (over / under) and suspected gaps in care for providers, new models of care and payment.
What would be helpful is if a national patient identifier was created so that disparate data sources (claims, clinical, administrative) could be matched with the same consumer (patient or client). Today, a national patient identifier does not exist outside of our social security number. So, while congress is blazing trails into a new data management environment like claims data - the larger national system suffers from basic lack of usable data governance structures like a national patient identifier that would assist in streamlining consumers access to their data ....not a 'COPY' of a paper record or pdf of their partial record.
Let's do the things that makes sense, in an order that allows progress and lets stop trying to pretend that access to another data set is the answer - when actually it leads to confusion and creates more complexity in a health care system already riddles with complicated, antiquated and sometimes completely outdated data practices.
@phdmoon
data scientist and consumer data sharing preference expert