Patients Really Want Up-To-Date Access to Their Health Data

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An Embarrassing Story

The other day I was meeting someone for the first time. Judging by appearances, I estimated a good ten years of age between us – me being older. (The exact numbers aren’t necessary for this particular story – it’s embarrassing enough without those details.) After learning each other’s names, she began telling me she wanted to start lifting weights and asked if I could meet up with her sometime to “show her the ropes.”

“Wow,” I thought. “A twenty-something-year-old asking me for fitness advice! She must think we’re close in age and that I’m hip and stuff like that.”
While trying not to let my arrogance show, I exclaimed, “Who, me? I’m no pro by any means, but I suppose I can teach you a few things.”

“That’s great,” she exclaimed. “Can I get your phone number?”

I answered her with the first thing that came to mind and absolutely blew my “young-and-hip cover.” I said, “Sure, do you have a pen and paper?”

Insert a long and awkward pause while we both anxiously turned our heads to the left and right, looking around for an actual pen and piece of paper.

She then handed me her phone and explained, “Or you can just plug your info in my contacts.”

Immediately I knew I had shown my age and hip-less-ness. Over hearing our exchange, my husband chuckled slightly and may have even uttered the word archaic under his breath.

All embarrassing stories aside, I’m not actually insecure about my age (most of the time), and I’m quite flattered she asked for my help even though I only dabble in weight lifting as a hobby. I can now laugh at my comment and recognize how it sounded pretty outdated. Everything’s done digitally nowadays, often right from a phone. Gone are the days of keeping a pad of paper in your purse in case you needed to jot down someone’s phone number or your grocery list. Even my children’s report cards and lunch-money accounts can all be accessed from the convenience of my smartphone. Even the term smartphone sounds outdated! Aren’t all phones smart these days? Point is: we live in a digitally savvy world and people love the convenience and control they have through the use of their devices. People approach their healthcare with the same expectations.

Outdated Methods

Much to my surprise, it’s actually very difficult to acquire a digital copy of your medical records these days. As I’ve mentioned before, my youngest son had an anoxic brain injury at the age of three-months-old and was diagnosed with Cerebral Palsy. As his mom, managing his healthcare is a full-time job. We’re fortunate enough to live in a region where there’s no shortage of excellent doctors, and we’ve created a great team of physicians to ensure his progress. However, we’ve recently expanded that team to include a couple of other physicians outside of the region. Neither you nor I have the time for me to fully explain how difficult and very inconvenient it was to transfer all of his medical data to these new physicians. To make a long story short, it involved multiple trips to the facility’s main campus, a treasure map to find the Medical Records Office, several fees, a long in-office wait, and then even more time spent waiting for the records to arrive via snail mail.

I was unpleasantly shocked at the difficulty and inconvenience of it all. Honestly, if I wasn’t so passionate about my son’s health, I probably would have given up. It makes me wonder how many other patients out there relinquish taking ownership in their health journey because of the outdated hoops we have to jump through to acquire our own health data. Furthermore, how much more meaningful could patient-physician interactions be if both parties were properly empowered, equipped, and informed?

Data Silos

In her article for Patient Engagement Hit, Sara Heath writes, “From providers to payers to patients, siloed health information has presented one of the key limitations of meaningful health interactions.” (1) To further illustrate the problem, she quotes CMS Administrator Seema Verma: “In today’s digital age, our health system’s data sharing capacity shouldn’t be mired in the stone age. Unfortunately, data silos continue to fragment care, burden patients, and providers, and drive up costs through repeat tests.” (1)

Interoperability Rules

The U.S. Department of Health and Human Services (HHS) recently finalized new rules that aim to govern healthcare data interoperability. From the official HHA press release, “The ONC Final Rule identifies and finalizes the reasonable and necessary activities that do not constitute information blocking while establishing new rules to prevent “information blocking” practices (e.g., anti-competitive behaviors) by healthcare providers, developers of certified health IT, health information exchanges, and health information networks as required by the Cures Act.” (3) Now I’m no politician, or a professional in the medical field, but from my professional patient perspective, I’m grateful the problem of siloed healthcare data isn’t being swept under the rug.

technology, communication and people concept – happy senior woman with smartphone at home


The new rule also mandates transparency on a variety of levels within healthcare and ultimately equips patients with information, enabling them to properly manage their own healthcare. Continuing with Heath’s article, ONC head Don Rucker, MD states, “Delivering interoperability actually gives patients the ability to manage their healthcare the same way they manage their finances, travel and every other component of their lives. This requires using modern computing standards and APIs that give patients access to their health information and give them the ability to use the tools they want to shop for and coordinate their own care on their smartphones. A core part of the rule is patients’ control of their electronic health information which will drive a growing patient-facing healthcare IT economy, and allow apps to provide patient-specific price and product transparency.” (1)

Now More Than Ever

Imagine my joy when I learned I had to physically enter the main healthcare facility to receive a copy of my son’s medical records in the midst of a global pandemic. While they do perform screenings and other precautionary measures, it’s a large facility that’s bustling with people (both sick and well) all day long. Once again, the methodology seemed outdated and in juxtaposition with the current status of the pandemic. The healthcare world needs this new ruling now more than ever. In her journal article, “How to Improve Patient Experience in the ROI Process,” Mariela Twiggs writes, “During COVID-19, patient satisfaction depends heavily on an efficient and comprehensive portal experience. The Interoperability and Patient Access final rule (CMS-9115-F) puts patients first, providing access to their health information when they need it most and in a way they can best use it. This rule finalizes new policies that give patients access to their PHI [protected health information] and moves the healthcare system toward greater interoperability. The new rule specifically mandates access to more information through a portal, so many patients can avoid going through the traditional ROI [release of information] process.” (2)

To Be Continued

There’s so much relevant information on this topic; I think I’ll expand on it more in our next Thinking Thursday TIPs article. For now, I’ll leave you for now with a quote from Twigg’s article that sums up the patient’s desire on the matter. She quotes Alicia Elfer, regional operations manager at MRO (a nonprofit healthcare system) and writes, “In our experience, offering a patient several options for obtaining their PHI has always been the best method of providing a sense of patient satisfaction and control. The facility may have physical control of the PHI but the patient has control over how to receive the information or have it sent to a third party. After all, it is their information so they should have control over how it is used and how it can be obtained. And, it is best to inform patients up front of any fees and the approximate timeline so they can know what to expect.” (2)

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Thank you!

Jerry L. Stone
MedicalGPS, LLC.



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