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New Rule Puts Medical Data in Patients’ Hands

By Jayson Marwaha and Tiffany Tuedor 

On April 5, 2021, a quiet, but potentially transformative shift regarding patient access to data occurred.

Health systems are now required to provide patients with timely access to their own medical records, upon request. (Shockingly, this hasn’t been a requirement in the past.)

This measure, known as “information blocking provision,” is part of the Final Rule put forward by the Office of the National Communicator of Health Information Technology (ONC). Patient access to records has significant positive impacts on their care. A prior study showed that patient access to primary care records alone leads to better understanding of their care plans and medication adherence (Figure 1).

Efforts to educate patients about this policy may help fulfill its goal of enabling patients to take control of their health. 

Figure 1: Evidence to support increased patient access to medical data.

Figure 1: Evidence to support increased patient access to medical data.

Impacts of the provision

  • What you, the patient, can now do: You can now request almost any part of your medical chart — notes, lab results, etc. (certain exemptions apply) — and your doctor or health system must give them to you in a timely manner.
  • How you can use this access to your benefit: You can now more easily share your medical data with other doctors if you want a second opinion or you want to switch health systems.
  • What you should be cautious about: You might be able to see important test results before they have been seen and interpreted by a doctor. If you have any questions about the significance or implications of your medical data, you should ask your doctor first. You’ll also want to be careful about who you share your medical data with.
  • What’s coming up in the near future: Soon you’ll be able to get near-real-time access to your medical chart through an app of your choice. Some health systems may already offer this, but it won’t be mandatory for them to provide this until next year.

Why health policy literacy matters

Health systems have been preparing to comply with the information blocking provision of the ONC Final Rule for years, but patients have few ways of knowing that this legislation (and the access it offers) even exists. 

Few materials exist to help them understand what it means for their care, or how it will impact their next visit to the doctor’s office. The ONC has a web page where they explain what the Final Rule means for patients, but their explanation offers the patient little actionable information on how to leverage the Final Rule to access or use their medical data in meaningful ways right now (Figure 2).

Figure 2: The ONC’s explanation of what the Final Rule’s implications are for patients.

Figure 2: The ONC’s explanation of what the Final Rule’s implications are for patients (image via https://www.healthit.gov/curesrule/what-it-means-for-me/patients).

More broadly, there is a significant gap between official state and federal health materials and the health literacy of the average patient (Figure 3).

Figure 3: The gap between average patient literacy and the literacy level at which most official state and federal health materials are written.

Figure 3: The gap between average patient literacy and the literacy level at which most official state and federal health materials are written. 

Many landmark pieces of legislation in the domain of health care information technology (IT) have been passed in the past decade that affect patient care, such as HIPAA and the HITECH Act, and, of course, the ONC Final Rule.

Unfortunately, there is often a risk of the patient being overlooked in the rollout and enforcement of these policies. Many patients are unaware that these policies exist; those that are aware may not be able to decipher the legislation in terms of how it will impact their care. 

As graduate students in Harvard Medical School’s Master of Biomedical Informatics degree program, we wanted to try to bridge that gap. We’ve created resources about the ONC Final Rule, and also the benefits of health IT literacy, through our Health IT Literacy Project. The website has easy-to-read, clearly-designed, shareable materials that explain to patients how recent and upcoming health IT legislation is relevant to them and will affect their day-to-day care. 

We developed these materials with the help of Dr. Chase Parsons of Boston Children’s Hospital and the Harvard Medical School Department of Biomedical Informatics, and Dr. Sara Gerke of Harvard Law School.

We hope to continue developing similar materials for other upcoming ONC Final Rule provisions and additional health IT policies. 

While the field of health IT continues to evolve rapidly, it’s important that patients aren’t left behind. Translating health IT policies for patients helps to ensure that these policies impact health care for the better.

Please visit the Health IT Literacy Project at https://projects.iq.harvard.edu/thehealthitliteracyproject to view our patient-facing materials on recent and upcoming health IT policies and to share these materials with others.

Jayson Marwaha is a general surgery resident, an NIH/NLM postdoctoral fellow in biomedical informatics at Harvard Medical School and Beth Israel Deaconess Medical Center, and co-founder of the Health IT Literacy Project.

Tiffany Tuedor is a Master’s Student at Harvard Medical School, studying Biomedical Informatics, and co-founder of the Health IT Literacy Project.​

The Petrie-Flom Center Staff

The Petrie-Flom Center staff often posts updates, announcements, and guests posts on behalf of others.

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