Healthcare’s Patient Access Problem is Big—But There's a Fix

May 23, 2018
There is significant potential for health IT to prove beneficial in medical record access and cut the exorbitant costs that patients are currently paying for their health data.

It was quite discouraging to read the recent GAO (Government Accountability Office) report on the challenges associated with patients’ access to medical records, which found that some patients—particularly those with chronic conditions and lengthy records—believe they’re being charged too much to access their records.

GAO, which reviewed four states for the 25-page report—Kentucky, Ohio, Rhode Island, and Wisconsin—found that each have laws that vary in terms of the fees allowed for patient and third-party requests for medical records.

For background, under the Health Insurance Portability and Accountability Act of 1996 (HIPAA) and its implementing regulations, providers are authorized to charge a reasonable, cost-based fee when patients request copies of their medical records or request that their records be forwarded to another provider or entity.

In the case of third-party requests, when a patient gives permission for another entity—for example, an attorney—to request copies of the patient's medical records, the fees are not subject to the reasonable cost-based standard and are generally governed by state law. According to stakeholders GAO interviewed, the fees for third-party requests are generally higher than the fees charged to patients and can vary significantly across states.

So, while the state fees do differ, the key discouraging part of the report was when GAO reported that one unnamed patient advocacy organization, which collects information on patients’ access to their medical records, described the following examples reported to them by patients:

  • Two patients described being charged fees exceeding $500 for a single medical record request.
  • One patient was charged $148 for a PDF version of her medical record.
  • Two patients were directed to pay an annual subscription fee in order to access their medical records. One patient was charged a retrieval fee by a hospital’s ROI vendor for a copy of her medical records. Retrieval fees are prohibited under HIPAA.

It’s important to point out that the impact of these charges for patient records goes well beyond just a one-time cost for the person involved. As GAO auditors stated in the report, “In addition, according to patient advocates we interviewed, high fees can adversely affect patients’ access to their medical records. For example, one patient advocate told us that some patients simply cancel their requests after learning about the potential costs associated with their request.”

The report further stated, “Another patient advocate told us that patients are often unable to afford the fees charged for accessing their medical records, even in cases when the fees are allowed under HIPAA or applicable state law. This advocate explained that per-page fees, even if legally authorized, can pose challenges for patients; in particular, patients who have been seriously ill can accumulate medical records that number in the thousands of pages and can, as a result, face fees in excess of $1,000 for a single copy of their records.”

What Can Be Done?

Thinking deeper about patients who are charged such excessive fees just for simple medical records access, it becomes quite obvious how this is a massive problem that must be fixed, considering the government’s clear desire to empower consumers.

But this begs also the question: just how ready are patients for this increased responsibility if there are already so many barriers to simply obtaining their medical records? You also have to wonder how motivated patients will be to participate in initiatives such as Medicare’s Blue Button 2.0 if their engagement levels have previously been subdued due to such high costs associated with medical record access. In this sense, I believe our healthcare system has failed.

It should be pointed out that GAO auditors also spoke to provider stakeholders regarding the challenges they are facing in giving patients their medical records. The report noted that one common piece of feedback from providers was that the increased use of electronically stored health information in EHRs (electronic health records) “has resulted in a more complex and challenging environment when responding to requests for patients’ medical records.” For example, these stakeholders noted the following:

  • Extracting medical records from EHRs is not a simple “push of a button” and often requires providers or their ROI [release of information] vendors to go through multiple systems to compile the requested information. Stakeholders noted that printing a complete record from an EHR system can result in a document that is hundreds of pages long due to the amount of data stored in EHR systems.
  • Representatives from three ROI vendors said that as providers have transitioned from using paper records to using EHR systems, information has been scanned into electronic medical records. This has, in some cases, resulted in records being incorrectly merged (e.g., the records of two patients merged into a single record). As a result, when responding to a medical record request, providers or their vendors must carefully go through each page of the record to ensure only the correct patient’s medical records are being released.
  • A provider representative, representatives from four ROI vendors, and two experts noted that providers often have multiple active EHR systems, or have legacy EHR systems in which some medical records are stored. This requires providers and their vendors to go through multiple EHR systems to extract information in response to a medical record request.

If one is going to be fair about the challenges associated with patients’ retrieving their records, the provider burdens have to be considered as well. As such, one of the first questions I had after I read this report was if new forms of healthcare technology could serve as a solution to this access issue. In theory, if a company such as Apple—which just recently launched its Health Records feature—indeed steps up to the plate and provides a one-stop-shop for patient health data, would that lessen the need for patients to request copies of their health records?

Consumers who use the Apple Health Records feature now have medical information from various institutions organized into one view covering allergies, conditions, immunizations, lab results, medications, procedures and vitals, and will receive notifications when their data is updated, Apple has said. And even if the company who moves the needle on patient medical records is someone other than Apple, the point remains the same: digital health should be able to solve this archaic problem of paying ridiculous costs for medical record copies.

GAO auditors somewhat addressed this issue in the report, stating, “The use of patient portals has not eliminated patient requests for access to their medical records; a provider representative we interviewed said that many patients still prefer to obtain paper copies of their records.”

But nonetheless, as we move forward into an increasingly digital age of healthcare, there is significant potential for health IT to prove beneficial in medical record access and cut these exorbitant costs. Because the alternative —keeping the status quo by having incredibly lengthy medical records that burden providers’ workflows and patients’ wallets—is unacceptable.

Comments? Questions? Send to @RajivLeventhal or comment below.

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