Do you have a copy of your health record? All your health records?
For American patients, the answer is probably no, unless you’ve paid a fee, invested in a fax machine, and jumped through a number of hoops. Different providers likely use different digital portals, leaving patients with a multitude of platforms to navigate. For those with complicated medical histories, it is difficult to gather important information such as imaging tests and lab reports when seeing a new doctor.
But it should get easier thanks to new rules that came into effect in October under the 21st Century Cures Act. It gives patients full access to their own medical records, in a digital format. This means that providers must make patient records – all of them – available, digitally, at their request. The process should be free, fast and secure.
“To think that we actually have more transparency about our personal finances than our own health is quite an indictment,” Isaac Koaneprofessor of biomedical informatics at Harvard Medical School, Told New statistics. “This will help reverse the trend.”
A brief history of medical records
When medical records began to go digital in the 1990s, regulators quickly realized that additional safeguards were needed to protect them. Under HIPPA, the Health Insurance Portability and Accountability Act of 1996, a rule called Standards for Privacy of Individually Identifiable Health Information (the “Privacy Rule” for short) was put in place primarily to protect the medical records of individuals against foreigners.
The rule was also intended to enable “the flow of health information necessary to provide and promote high-quality health care and to protect the health and well-being of the public,” explains the US Department of Health and Human Services.
But even though patients were technically allowed to access their records, they often found insurmountable obstacles called “information blocking.” It was legal for providers to charge fees, require information to be sent only by fax, and require requests to be made in person.
The future of medical records
Experts hope the new rule will give patients more power over their own health and result in better care. For example, when you have access to your complete records, it may be easier to switch providers or add a new specialist. It can also make it easier to share information with researchers, if desired.
A number of organizations are already helping patients organize what could be a deluge of information. For example, websites like “Where is my medical file?” offer advice on the rights and procedures for obtaining your records.
Advocacy groups like Open grades help patients navigate these systems, while organizations like Citizen offer tools for organizing records. As Ciitizen says, “Having control of all your records in one place makes it easier for you to get a second opinion, access clinical trials, get personalized treatment, coordinate with caregivers, and contribute to research.
Worldwide Medical Records
Although the new rule only applies to people in the United States, similar efforts are underway in other countries that would grant patients access to their own health records. In 2017, Canada, Finland, France, Iceland, New Zealand, Norway, Scotland, Singapore and Sweden announced their intention to allow citizens to access their health data. Only three countries, Denmark, Estonia and Australia, had systems fully in place that year.
More recently, the European Commission has adopted a formal recommendation that will allow patients easier access to their medical records across country borders. The new recommendation builds on the General Data Protection Regulation (GDPR) adopted in 2016 and granting citizens the right to access their personal data.
Experts and patients are hoping that more transparency and information sharing will be good for patient outcomes. As efforts pay off, some researchers say advancements in technology could help bring new information just by looking at existing records. For example, artificial intelligence and machine learning could spot patterns in written doctor visit notes once they are digitized and accessible.
It can be confusing and even a little awkward to read a doctor’s notes, which are often a kind of shorthand rarely written with patients in mind. An article from the Journal of the American Medical Association offers some advice for patients who receive doctor’s visit notes in their medical records.
What to consider when reading your medical notes