Healthcare’s Patient Access Problem is Big—But There's a Fix | Rajiv Leventhal | Healthcare Blogs Skip to content Skip to navigation

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

May 23, 2018
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For patients to truly become empowered, they cannot be paying astronomical fees to get copies of their medical records

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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PCCI Combines Predictive Modeling, Patient Engagement to Address Pediatric Asthma

August 16, 2018
by David Raths
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Over three years, effort leads to 31 percent drop in ED visits and 42 percent drop in admissions for pediatric asthma cohort
Steve Miff

The Parkland Center for Clinical Innovation (PCCI) in Dallas has spent the past three years developing and testing predictive models to identify children at risk for asthma exacerbations. Combining those models with clinical and population health interventions has led to improved outcomes, says PCCI, which is now turning its efforts to pre-term births.

This targeted population health effort was funded by Parkland Community Health Plan, the largest Medicaid plan in the Dallas area. PCCI has eight clinicians on staff, including two pediatricians by training. “They intuitively knew that for the population we are serving pediatric asthma is typically not well managed and is a high-cost condition,” said Steve Miff, president and CEO of PCCI.

A deep-dive analysis of the data for the health plan identified areas that had the largest expenditures and where there was the most variation in care and potential overutilization for services, such as emergency room visits for asthma, he said.

“We had to understand the disease itself and where these children receive care in the community.”

PCCI has built a predictive model to risk-stratify the children into different cohorts based on the likelihood that their asthma condition would exasperate over the next three months and likely require emergency department visits or hospitalizations. The model itself uses claims data, EHR data, social determinants of health information, which might include gaps in insurance coverage. “We also ingested and used data from EPA sensors in the community about air quality,” Miff said. That has been only marginally useful so far because the sensors are not specific enough to be able to attribute to an individual,” he said, “so we are working with local universities and some companies that are deploying sensors to get data on air quality that is more real-time and more specific.”

Part of the project involves being more proactive with clinicians and patients.  It sends alerts to the 21 physician practices involved before visits with these patients. Because the payer is involved, the case manager at the health plan gets a risk-stratified list of patients. The risk manager use that to focus on the very high-risk cohort, Miff said.

“We also engage directly with the children and families themselves in their home,” he said. “We enroll the very high-risk cohort into a texting program.” They receive texts multiple times per week with reminders about upcoming appointments, reminders about the need to take their medication, and ongoing education about their condition so it stays top of mind. “What is cool is that they 70 percent rated it very useful in a survey, and over a 12-month period, we saw only 15 percent attrition, which is pretty fantastic when you think about the frequency of engagements.”

Miff said that over the last three years, this has proven to be an effective way to engage individuals. “We have expanded the number of clinics and individuals involved and we have continued to refine the model.

He pointed to some key improvements: The program is saving the health plan around $6 million per year in costs for this population. “Contributing to that is that we have seen a 31 percent drop in ED visits and we have seen a 42 percent drop in in-patient admissions for the population,” he said.  Alerts embedded in clinicians’ EHRs and monthly progress reports have led to up to 50 percent improvement in asthma controller medication prescriptions and a 5 percent improvement in the asthma medication ratio.

PCCI also did a cross-market analysis to compare apples to apples with other Medicaid insurers. The overall Dallas-Fort Worth Medicaid managed care market saw ED visits decline 5 percent over the past three years in a similar population. The overall market is making progress, Miff said, but a similar cohort within Parkland Community Health Plan had a 31 percent drop.

PCCI also found that the children most actively engaged with texting had even better outcomes in terms of reduced ED utilizations.

PCCI did have a cohort of high-risk children they could not get engaged via the texting program. They designed a pilot to use Amazon Echo Alexa as a personal assistant and a group interaction to gamify this process for those individuals. The Echo is programmed to ask questions about their asthma. The children win together as a group if they participate on a regular basis and their knowledge about their condition improves. “The results are not in on that pilot in terms of how long they stay engaged,” Miff said, “but it is an interesting way to engage them in the home.”

Looking at other cohorts that are costly, have high utilization and are not favorable for patients, they chose pre-term birth as a next target. “Nine months ago, we launched a pilot to look at that population,” Miff said, “and we are rolling out a subgroup of that population looking at gestational diabetes using a similar approach and model.”

“For the sub-cohort on gestational diabetes, we need additional information if we are going to engage with them at home. It is not enough to build these models based on the most recent clinical or claims data or social determinants,” Miff said. “We need more real-time information about their condition, so we have included remote monitoring devices to extract real-time data about three things: blood pressure, blood glucose and weight so we can monitor those.” PCI is designing the predictive models that take those into account. For the general diabetic population, they are focusing on the diabetic foot ulcer population.

PCCI’s impressive results with predictive modeling and patient outreach have drawn interest from other Medicaid plans.

“We are at a point where this is ready to be tested in other environments,” Miff said. “We are in advanced discussions with two other Medicaid plans in other parts of the country, and in advanced discussions with one commercial payer with an employer population to test these models. They will have to figure out to adjust the predictive models and the work flows and the in-home outreach from a technology perspective.”


More From Healthcare Informatics


Apple Health Records Project Continues to Gain Provider Participants

August 6, 2018
by Rajiv Leventhal
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In the last few weeks, nine more health systems have signed on to support Apple’s new “Health Records” initiative.

The new institutions were announced on Twitter by Ricky Bloomfield, M.D., who is working at Apple as a clinical and health informatics lead.

In January, Apple announced that it would be testing the Health Records feature out with 12 hospitals, inclusive of some of the most prominent healthcare institutions in the U.S. Then in March, Apple tripled the number of health systems participating, from 12 to 39, and announced that the new capability was available to all iPhone users with the latest iOS 11.3 update. Now, as of an Aug. 2 update from Apple, approximately 80 provider institutions are on board with the project.

According to Apple, the updated Health Records section within the Health app brings together hospitals, clinics and the existing Health app, with the aim to make it easy for consumers to see their available medical data from multiple providers whenever they choose.

Consumers who are participating will 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. Health Records data is encrypted and protected with the user’s iPhone passcode, Apple officials attest.

In May, Apple also introduced a Health Records API (application programming interface) for developers and researchers. The new API, set to be delivered starting this fall, will enable developers building health apps to individualize experiences, with the user’s permission, based on the user’s unique health history, Apple officials have said.

Related Insights For: Patient Engagement


Patient Portals Commonplace in Healthcare Organizations, Survey Finds

July 27, 2018
by Rajiv Leventhal
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Nine out of 10 healthcare leaders surveyed in a recent Medical Group Management Association (MGMA) poll said that their organization offers a patient portal.

The remaining 10 percent that do not offer one said they are working to implement one soon or have the software as part of their EHR (electronic health record) but it has not yet been implemented. The poll was conducted this week, with more than 1,750 applicable responses.

Also of note, of the 90 percent that offer a patient portal, 43 percent accept patient-generated health data (PGHD) for clinician review. Additionally, 37 percent reported their patient portal does not accept PGHD for review and the remaining 20 percent were unsure.

In an insight article accompanying the survey results, Pamela Ballou-Nelson, R.N., MSPH, Ph.D., principal, MGMA Consulting, noted that while she is an advocate of patient portals, as it stands today, many she has observed “are clunky and offer nothing more than secure message exchanges.” For a patient portal to categorically assist in patient activation, it should include the following five functions, Ballou-Nelson wrote:

  • The ability for patients to view their health data, such as immunizations, lab work and imaging results
  • Online appointment scheduling
  • Online billing
  • Prescription refill requests, which can eliminate the need to make a phone call
  • Data update capabilities, so that patients can upload blood pressure readings and/or other patient generated health data

See more on Patient Engagement ...