Open notes will be the mandatory in the US

As of April 5th 2021, a new US policy is requiring immediate release of records to patients. The rule require US healthcare providers to give patients access to all the health information in their electronic medical records without charge.

In Sweden, we can access most of the information from our electronic health records through the national patient portal 1177.se – and there are national recommendations stating that all citizens should have immediate online access to all the information documented about them in healthcare, but the recommendations are not enforced and it’s up to each healthcare provider to decide what patients have access to and not. Still, Swedish patients probably have access to a lot more than many others, but it is at the goodwill of healthcare providers.

The new US rule will make it possible to fine healthcare providers or EHR vendors that block patients from access information. This of course sharpens the rule and hopefully will speed up the implementation.

Another major difference between the Swedish context and the US is that the new legislation also stipulates that people should be able to download their data to third party digital applications (apps) and aggregate all their health records into their digital platform of choice. This should be implemented by October 2022, allowing people to share health information with anyone involved in their care. In Sweden, this is out of the question. Similar solutions have be proposed, but have consistently been deemed not secure enough by the Swedish Authority for Privacy Protection. In fact, a function that would allow patients to add a person of their own choosing to have access to parts or all of their EHR was implemented in the Swedish “Journalen”, but removed after the Swedish Authority for Privacy Protection found it illegal. It will be interesting to follow the evolution in Sweden and internationally as patients are increasingly demanding and gaining access to their health information.

Earlier this year, I was one of the co-authors for a BMJ editorial on the new US regulation:

Salmi, L., Blease, C., Hägglund, M., Walker, J., DesRoches, C. (2021). US policy requires immediate release of records to patients. BMJ. British Medical Journal, 372

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