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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Consumer Health Tech Startup Ciitizen Raises $17M

January 16, 2019
by David Raths, Contributing Editor
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Building a platform to help patients collect, organize and share their medical records digitally

Ciitizen, a California-based company working to build a platform to help patients collect, organize and share their medical records digitally, has closed $17 million in new funding in a round led by Andreessen Horowitz and that included Section 32 and Verily.

The Redwood City, Calif.-based company said it would use the proceeds to accelerate platform development and expand commercial operations. The company received a Series A financing round of $3 million led by Andreessen Horowitz in July 2018. As part of the new financing, Vijay Pande, general partner of Andreessen Horowitz's Bio fund, will join the Ciitizen board of directors. Michael Pellini, managing partner at Section 32, and Andy Harrison, head of business and corporate development at Verily, will join the board as observers.

Ciitizen’s co-founders are Anil Sethi, Premal Shah, and Brian Carlsen. CEO Anil Sethi’s last company, Gliimpse, was acquired by Apple. Carlsen was formerly special projects lead at Apple, and serves as director of clinical informatics at Ciitizen. Deven McGraw, who has deep experience in HIPAA and medical data sharing, and was formerly the head of privacy at the U.S. Department of Health and Human Services, also works for Ciitizen.

"We are aggressively hiring to support release of products in partnership with select healthcare stakeholders that will immediately benefit patients—all driven by obtaining and organizing a patient's health data," said Premal Shah, COO, in a prepared statement. "Contrary to what is happening today, we want to facilitate patients gaining maximum direct benefit from what is rightfully theirs: their personal healthcare data."

"We are aggressively hiring to support release of products in partnership with select healthcare stakeholders that will immediately benefit patients—all driven by obtaining and organizing a patient's health data," said Premal Shah, COO and Co-Founder of Ciitizen. "Contrary to what is happening today, we want to facilitate patients gaining maximum direct benefit from what is rightfully theirs: their personal healthcare data."

Ciitizen also has initiated a weekly blog, The Voice of Ciitizens, that offers opinions from healthcare thought leaders on ways to address some of healthcare's most pressing challenges, including patient empowerment with their data.

 

 

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Survey: Consumers Want to Manage Healthcare Benefits, Costs via Smartphone

January 15, 2019
by Heather Landi, Associate Editor
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There is a growing “mobile first” trend, as consumers increasingly want to preform everyday tasks and utilize services on their smartphones, and this trend is moving into healthcare. A recent consumer survey indicates that consumers want more transparency, convenience and control of their own healthcare, particularly through mobile access, and, this demand could be influencing their healthcare decisions.

A survey by Metova, a provider of mobile, connected care, connected home and Internet of Things (IoT) solutions, found that 80 percent of consumers would be more likely to visit a doctor or seek treatment if they could see the exact out-of-pocket cost on their smartphone. And, three-quarters of consumers are interested in viewing and managing their health care benefits using a smartphone.

Metova surveyed 1,000 consumers who have healthcare to gauge their understanding of their health benefits, and to find if technology can improve their experience.

Nearly half of consumers have avoided going to the doctor or seeking treatment due to uncertainty around their benefits, according to the survey. Looking at the role of technology, nine out of 10 consumers said they would like an app that provides notification when a doctor sends a prescription along with pharmacy location and pickup time. In addition, 60 percent would like to purchase eyeglasses or contact lenses using their smartphone.

“It’s impressive to see how having a clear understanding of out-of-pocket cost on a smartphone would have a powerful positive effect on consumers’ deciding to seek treatment or even visit a doctor,” Jonathan Sasse, CMO at Metova, said in a statement. “Our sentiment surveys overwhelmingly demonstrate that the new connected consumer is ready and wanting to manage a wide range of facets of everyday services all via their smartphone, and that a person will choose one business, or even a doctor or insurance providers over another based on this mobile experience.”

Ken Erickson, CEO at Bridge Purchasing Solutions, said in a statement, “The healthcare industry is overdue for disruption. Consumers want more transparency, convenience, and control of their own healthcare.”

Related Insights For: Patient Engagement

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One Thought-Leader’s Look at the New Social Contract in Medicine and Healthcare

January 7, 2019
by Mark Hagland, Editor-in-Chief
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Healthcare thought-leader Michael Millenson shares his perspectives on the emerging new social contract around medical care and healthcare—in a time of accelerating technology disruption

Last week, Michael Millenson, president of Health Quality Advisors LLC, and an associate professor of medicine at Northwestern University’s Feinberg School of Medicine, authored a thought-piece in the online publication STAT, entitled, “Google is quietly infiltrating medicine—but what rules will it play by?” Millenson looked at the emerging landscape in healthcare around the accelerating participation of healthcare consumers in using web search, consumer-facing apps, and other tools, to help them educate themselves about personal health and healthcare delivery issues, as well as the emergence of a number of corporations, including Google, Amazon, and Apple, as disruptors in the healthcare world—both as innovators in technology, as well as, increasingly, players in the care management and care delivery arenas.

“If ‘data is the new oil,’ as the internet meme has it, Google and its Big Tech brethren could become the new OPEC,” Millenson wrote on January 3. “Search is only the start for Google and its parent company, Alphabet. Their involvement in health care can continue through a doctor’s diagnosis and even into monitoring a patient’s chronic condition for, essentially, forever.”

Meanwhile, Millenson wrote, “Suppose you’re worried that you might have diabetes. Googling ‘diabetes’ brings up not just links but also a boxed summary of relevant information curated by the Mayo Clinic and other Google partners. Google recently deployed an app enabled with artificial intelligence for remote professionals to use that can all but confirm diabetes-related retinopathy, a leading cause of blindness. Diabetes is also a diagnosis your doctor might have predicted using more Google AI applied to the electronic health record. Meanwhile, a Google joint venture called Onduo recently announced a partnership to allow a major pharmacy chain to use its “virtual diabetes clinic” to coach patients on managing their disease. And, of course, at home you can get daily diabetes reminders from your Google Assistant.”

And, in some cases, he added, “[Y]our doctor could actually be Dr. Google. The brick-and-mortar Cityblock clinic, whose first site opened in Brooklyn, N.Y., earlier this year, is an Alphabet spinoff. It promises a ‘personalized health system’ experience for low-income patients.”

And with Google hiring the former chief executives of both the Geisinger Health system and the Cleveland Clinic, more and more interesting developments are certain to be at hand.


Michael Millenson

And all of this, Millenson noted, is prompting some in the industry to ask what the implications are of these developments for the social contracts that have long anchored physician-patient/clinician-patient, and patient care organization-patient relationships and interactions. In that context, he spoke with Healthcare Innovation Editor-in-Chief Mark Hagland, following the publication of his STAT commentary, to discuss the implications of some of those current trends, for the future of patient care delivery. Below are excerpts from that interview.

There are so many developments taking place right now involving what might be called “interspecies” business combinations—payers and providers, payers and retail pharmacy companies, employers and providers, and on and on. Do you see some potential dangers in the uncharted territory that’s emerging in healthcare, because of such combinations?

What I was trying to sound as a cautionary note, not an alarm, but a cautionary note, was that, when barriers are breached in terms of definitions, there are new challenges to long-established ways that we do things. We all like to talk about disruption, but there are downsides. And those downsides need to be confronted squarely. And what I was trying to propose in my commentary was a practical ethical framework for dealing with downsides—not a mission statement, or whatever, but practical thoughts. If you have a commitment to accountability and shared responsibility, it brings up issues. Just because you believe you’re committed to patient engagement or lowering healthcare costs, or whatever noble goals you espouse, particularly if you’re working for a not-for-profit entity, or even a for-profit, personal and corporate interests can conflict with noble goals.

And even as all these kinds of partnerships can be wonderful, we also realize we need new ways of dealing with potential negative side effects. No hospitals that merge ever say, thank God we can get rid of the price pressure from insurance companies! And it’s not that individuals making statements about mergers are deliberately telling untruths, but they sometimes make statements that may not be in the best interests of patients.

Healthcare informatics arose from people who were in the HC field, who wanted to apply the benefits of informatics knowledge to improving care, lowering costs, and other problems. That’s a different set of assumptions from when you take people whose expertise is in manipulating data and information, and put them into healthcare. There are cultural issues there. People from within HC tend to say, there are certain problems, and let’s look for solutions.

But people outside healthcare sometimes have the tendency to say, we have this wonderful tool; look at all the ways we can solve your problems.

Looking at the entry into the healthcare delivery process of disruptors like Google, simply because of the near-universality now of web search as a consumer activity in healthcare—will consumers simply start self-diagnosing off the web now?

It’s one thing to look at Google as a search engine. It’s another to look at the issue of Google as an element in care delivery. The issue of “Dr. Google” is a significant one. I wrote an article recently called, “Beyond Dr. Google.” What happens if you’re using the Babylon Symptom Checker with AI? What happens if you’re looking at a mole? Because they’ll have a legal disclaimer. But we’re looking at an entire paradigm shift around how we interact with doctors. Years ago, I said the Information Age is to medicine as the Protestant Reformation was to the Catholic Church. It changed the people’s relationships to the priests; the Church didn’t go out of business, but it had to change. Once the laity could read the Bible, the role of the priests had to change. And I think that the role of physicians as holders of knowledge, has to change. They still have specialized knowledge; but the conversation has to change, and the tone has to change.

What I’m concerned about is when an organization like Google, Amazon, or Apple, starts partnering with physicians, what happens? When Google, Amazon or Apple, starts being a partner to help you with your diabetes, are they helping you have a better conversation? Or are they starting to use gathered information to try to cause behavior change, to manipulate you? And there’s a fine line between doing this for your own good, or because I want you to change?

And then there’s the accountable care issue—when you have attributed patients, and it’s in your financial interest now to collect and use social-determinants-of-health data and other forms of data, as well as apps and tools, to try to motivate your patients towards participating in the enhancement of their health status.

Exactly—now, there’s also a profit motive. I wrote an article about the secret use of the social determinants of health, for care management—and for profit, on the part of vendors that are putting data into algorithms and selling those solutions. LexisNexis found a correlation between someone in the household having completed some kind of professional certification, anything from a plumber’s license to a PhD—with medication compliance and adherence. The point is, you get companies that use information about my life, as raw data for analytics, that are meant to influence my behavior. We need a different kind of safeguard doesn’t go awry. And I’m not saying that what they’re doing might not be wonderful and disruptive in a good way, but nothing turns out as promised, whether Brexit or Google.

The social contract in healthcare, particularly between providers and patients, especially that between physicians and patients—what might that look like, or need to look like, in the coming years?

I see collaborative health as the new social contract. I’m not sure that that patriarchal, hierarchical relationship has changed as much as we might be thinking. I remember writing things 30 years ago that everything would change, and the hierarchies would be totally gone. They haven’t disappeared, though. Your grandmother was probably just grateful to see a doctor. And there are still a lot of people in the country who are still grateful just to see a doctor.

So part of that issue involves socioeconomic class, of course?

Yes, absolutely. That said, I also absolutely agree that a new social contract is going to center around collaborative health. And an explicit one is needed. There’s a lot of talk about that, around Google, Facebook, Alexa. But the medical element is different. When organizations that have tremendous data analytics capabilities, are applying those to the problems of individual patients, that gives us both the potential for unprecedented breakthroughs in patient care, and for the unprecedented ability to manipulate people. The fact that I know everything about your Google searches, your purchasing and eating patterns, and I’m tracing your driving patterns—that can help me improve your health, but also control your life, and manipulate people. And even if the decisions are to your benefit, a social contract demands shared engagement and shared accountability, because that’s the social contract that medicine needs, to retain its soul—even if that doesn’t help increase the value of the IPO or the price-earnings ratio, or the amount of money you get back from meeting your obligations under an ACO contract.

How do you see physicians and other clinicians adapting to this new world?

I think the social contract is even more important, because the power of the individual doctor is often decreasing now. If more and more doctors will be employed, and operating under stricter rules of accountability, that’s good for patients, but the balance between accountability and autonomy is a balance we’ve got to find. And we should welcome Amazon, Apple, and Google—they have an incredible potential to disrupt HC for the better; but the individual doctor, just like the individual patient, is going to be powerless to set a new social contract on their own. That’s why we need a social contract that encompasses clinicians, patients, patient care organizations, payers, pharmaceuticals, and everyone. It may be to my benefit that my doctor is using an app to track population health issues, but with the blurring of lines between different types of organizations, things get complex. Information is power, and the information we’re gathering is extraordinarily powerful, and good things can go awry. So frankly, I see this new social contract as a protection for physicians, and as something that will ensure that the “therapeutic alliance” that doctors like to talk about, will remain strong, even as other boundaries dissolve. And whether my doctor is employed by an insurance company, a hospital, or is a solo practitioner, it should make no difference to certain kinds of relationships.

 

 


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