Release the Results

Sep 19, 2023

A recent article published in the Wall Street Journal entitled Raw Medical Test Results Right to Your Inbox Spark Confusion and Concern continues to beat a dead horse. The only thing that is sparking confusion and concern is why we are still debating whether patients can handle their health information as if becoming a patient strips one of being a consenting adult with choices.

Here are my top four thoughts on this WSJ piece:

1) It’s almost 2024: release the results!

It’s the patient’s decision if they wish to see their results once they are available.

It’s the patient’s decision if they wish to have a carepartner, caregiver, advocate, friend, colleague, Google, or digital tool help them interpret and understand the results.

It’s the patient’s decision if they wish to wait to review their results with their doctor.

Delaying the release of available results may leads to many patients never receiving their results, delays in care, increases patient administrative burden, may lead to disease progression and even death. Don’t believe me? Check out the Unblock Health Patient Impact Stories collection, real stories of the harm that can happen when patients don’t have access to their results and the good that happens when they do.

2) Access to results when they are available isn’t the problem. The claims that patients are “too stupid/anxious/hysterical” to handle their results isn’t the problem (although the sentiments are grossly demeaning and insulting).

What’s causing the ongoing friction is the format of the results that are hitting our portals and mailboxes. We need plain language, actionable versions of our results. We need to distill the medicalese into easy to understand conclusions and provide patients with the next steps all in one place. AI and LLMs are strongly positioned to help.

It would be powerful to see a collaboration including the American College of Radiology (ACR), College of American Pathologists (CAP), American Medical Association (AMA), American College of Surgeons (ACS), and the Office of the National Coordinator for Health Information Technology (ONC), and Centers for Medicare & Medicaid Services (CMS) collaborate with patients and carepartners to reimage the future of results reporting. This is an essential step for building a resilient data exchange ecosystem can power patients lives and reduce clinician burden.

3) Scary diagnoses come with even scarier out-of-pocket costs and bills. I can assure that the BILLS that hit our portals and mailboxes cause greater harm and distress than the actual results. I’m talking suicidal ideation, bankruptcy, divorce, return to substance use, and contemplating fleeing the country. If you are advocating to delay results until a doctor is able to walk a patient through them, what is your stance on harmful billing practices? If you are attesting that results cause harm, it is irresponsible and unethical to turn a blind eye to the obscene bills that are causing rampant financial toxicity.

4) It’s time the Department of Education stepped in to update curricula from K-12 to incrementally teach children and young adults key concepts from a health literacy and healthcare experience literacy standpoint. We need to educate children and young adults to be proactive members of the US health care system when the time comes that they need engage with it.

We need to move not left, not right, but collaboratively forward. Stop the tug of war over whether or not patients should have access to their health information when they become available. It’s time to start solving for these friction points.

Release the Results

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