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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At the Seattle HIT Summit, UW Medicine’s Grosser Asks Leaders to Rethink Patient Engagement

October 22, 2018
by Mark Hagland
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UW Medicine CIO Joy Grosser shared her perspectives on patient engagement and the patient experience

Are patient care leaders failing to make a conceptual distinction that might really make a difference? That question was pondered by Joy Grosser, CIO at UW Medicine, the four-hospital University of Washington health system, in her opening keynote address on Monday morning at the Health IT Summit in Seattle, being held at the Grant Hyatt Hotel in downtown Seattle, and sponsored by Healthcare Informatics.

Speaking to an audience of healthcare leaders, Grosser, who joined UW Medicine as CIO just under a year ago, said that one key thing that patient care organization leaders need to ponder is the crucial difference between patient engagement and the patient experience, as an understanding of that distinction can really make a difference in how organizational leaders strategize forward to meet the needs of patients and communities.

Beginning her presentation, entitled “Patient Engagement: Can Digital Health Help Our Patients Become a Member of the Healthcare Team?” Grosser noted that she finds the terms “patient” and “provider” somewhat limiting and problematic, but also that terms like “consumer” can also be problematic, Grosser outlined some of the challenges and opportunities in enhancing both patient engagement and the patient experience







Joy Grosser

“When it comes to patient engagement, how are providers and patients—how are we working together to improve health?” Grosser asked her audience. “We all know that medication adherence is an issue. People do what physicians tell them to do, but how to we create greater engagement, which contributes to improved health outcomes? And how does information technology contribute? Even though my father was a physician, my parents were somewhat of the era in which you did what your doctor told you to do, without asking. Some years later, people began to research medical issues on their own. Now, my children’s generation has a completely different attitude. There is always the question of ‘why’ patients should do something in particular.”

Meanwhile, Grosser said, “I use the broader umbrella term ‘digital health’ to describe how we bring things to our patients.” Indeed, she said, “Oftentimes, ‘patient engagement’ and ‘the patient experience’ are described as interchangeable, but I find they’re very different things. The patient doesn’t have to be engaged to have an experience.” That said, “There is overlap, though. In fact, if you’ve had a bad patient experience, it’s going to be harder to engage as a patient.”

Meanwhile, Grosser told her audience that, while hosting a patient portal is just a beginning when it comes to engaging patients, website development is a necessary start. In fact, Grosser said, in a road trip the past weekend in which she went through several different large communities, she web-searched the websites of several different hospital organizations, and found that, among several of them, one could only scheduled appointments in a couple of or a few medical specialties, and that most appointment scheduling still had to be accomplished via telephone call.

So some of the limitations of patient portals include that, since the development of a patient portal was a requirement of the meaningful use program under the HITECH (Health Information Technology for Economic and Clinical Health) Act, simply having one really is no longer a differentiator in the market; second, portals tend to be not strongly customized versions of EHR (electronic health record) brand templates; and the portals that have been created tend to be difficult to customize as “containers” for a variety of patient-facing tools.

Still, Grosser noted, “There’s that opportunity to be a container of patient information, rather than just one place that the EHR sits. We recognized that there were limitations, as we moved into an app world and wanted to link those apps,” she said, of the hospital industry’s movement forward in this area.

Meanwhile, as a practical matter, telehealth inevitably started small, Grosser said. “It started with physicians saying, ‘OK, put my picture online’” to create an initial presence. “We didn’t move there as an industry, we moved as individuals; so much so that all our EHR vendors have pulled in virtual care elements into their EHR solutions. Our physicians were often slow to respond, though.” In relation to that, she recalled,  I worked in an organization in Southern California in which they began training physicians just out of residency” to specialize in telehealth, and “to learn how to interact from a screen. We actually worked with film industry people to train” those physicians how to interact more effectively through a screen. “There are literally physicians coming out of residency who are working online. People are calling them Uber doctors. They’re working for third-party vendors. We might want those physicians in our healthcare systems as well,” she noted.

More broadly, in terms of creating and expanding on a digital health presence, Grosser said that there really is a market growth opportunity there, but that so often, internal opposition will be a limiting factor. “Oftentimes,” she said, “your physician billing organization will say, ‘We can’t see a person virtually for the first time, because we can’t verify them as a real person. But there’s a real differentiator when teledoc companies said, I don’t care if I’ve seen you in person before or not.” So, she asked, “Are your physicians looking at this as an annoyance, an add-on, or a growth opportunity? I was at a conference about a year ago, and people were touting an online experience, except you got an appointment by calling first. They had linked the medical records, and visits, but not the scheduling for the visits. And are these visits recorded in your medical record as a visit? Or deemed as being an urgent clinic, where the documentation will have to be redone?” Numerous practical challenges remain.

One area of real opportunity, Grosser said, involves live chat with patients. “I’ve looked through many surveys” of healthcare consumers, to determine what it is that consumers say they want. Fundamentally, she said, patients want three things: access, communication, and knowledge. “But maybe how they want those will evolve, as the IT side evolves as well. They want mobile, including chat. And honestly,” she said, creating “chat is so easy. It’s an incredibly important part of that mobile industry as well.” And, she said, patients want a voice experience—in some cases, via technology like Alexa. That opportunity will be particularly strong on the mental health side of the industry.

In fact, Grosser said, healthcare consumers “want the same experience they get when booking airfares. They want to do that here in Seattle with hospitals and clinics,” to find out which patient care organizations will offer what types of physician visit availability, and eventually, even to compare specific moment-to-moment comparative availability. “And how do they get a Kayak-type experience, where they describe the kind of physician they want, and a mechanism can help them?”

Beyond scheduling ease, Grosser noted, “Patients want communication with their healthcare team. And they want knowledge,” including trusted, customized knowledge. That is where some type of Alexa experience, involving artificial intelligence, could prove quite appealing to patients in the near future.

Meanwhile, engagement could also apply along another dimension, Grosser told her audience. And that would be in the area of wearables and other consumer-facing devices that could appropriately communicate specific types of patient data to clinicians, as needed. For example, she said, “If I’m in orthopedics, I might not want to know how much you walk every day, but I might want to know you walked after your hip or knee replacement, or that you went for your physical therapy. AI [artificial intelligence] can help me filter the information I need as a health system.”

Ultimately, Grosser said, when it comes to innovation, “We are moving towards a mobile health maturity model. We’re looking for patient-generated data, generated in a meaningful way. We have to understand that that kind of information is meaningful.”

Meanwhile, Grosser asked, “How do we get to those empathetic health and healthcare tools? This is where I think the market for engagement will take us a long way. Patients will want to connect with non-threatening people to help them take the next steps. How do we make sure that they’re taking the right steps? That we want them to go off particular medication? How do we classify the right apps for them? Work together with their clinicians on the best apps for them?”

There are vast opportunities to create new forms and channels for the engagement of healthcare consumers, Grosser emphasized. But patient care organization leaders need to be very aware of the emergence of a broad range of disruptors, from technology and retail companies like Microsoft and Amazon, but also from such business combinations as CVS as Aetna, as any of those entities might easily rush in to fill voids that patient care organizations have not yet figured out how to fill.

“I think disruptors are good things to the industry,” Grosser told her audience. “If we look at Amazon-related headlines—at Amazon, they’re looking for data scientists, and have been talking about tackling healthcare for some time. My adult children were born before Amazon was created,” she noted. “I asked my children this weekend what they thought about doctors being on Amazon. They said, oh, that’s a great idea! And ended up being engaged in a great conversation. They don’t look at healthcare as a continuum of care. They look at it as offering options” to consumers. And in that context, she said, it's important to note that “The book industry was a test for where else Amazon wanted to go.” And after several years focused primarily on selling books, the executives at Amazon figured out how to succeed in selling a vast range of consumer goods via the same model. Could Amazon disrupt the retail pharmacy industry? Could the CVS-Aetna merger end up strongly disrupting the patient care delivered in medical clinics? What about the announcement last week on the part of Walgreens, which will be partnering with the 14-hospital, Grand Blanc, Michigan-based McLaren Health Care, to expand pharmacy and healthcare services across that state?

Meanwhile, employers represent another potential disruptor in this area. And auto manufacturers, who face the reality that one-quarter of the cost of producing a car, is eaten up by employee and family healthcare costs, are contracting directly with organizations like Cleveland Clinic, in order to cost-effectively manage their employees’ and employees’ family members’ costs for high-volume procedures like total joint replacement. Patient care organization leaders also need to look at the venture capital funders in healthcare to see where VC companies are investing their money into the future.

In the end, Grosser told her audience, the potential for patient care organization leaders to move proactively to engage their patients and improve their experiences, is great; but the potential for outside organizations to come into healthcare as disruptors, is also significant.

Patton concluded her presentation by sharing a quote from General George S. Patton: “Never tell people how to do things. Tell them what to do and they will surprise you with their ingenuity.”


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Health2047 Spin-Off Focuses on Prediabetes Coaching

October 9, 2018
by David Raths, Contributing Editor
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First Mile Care seeks to scale up CDC’s proven National Diabetes Prevention Program
First Mile Care CEO Karl Ronn

Health2047 Inc., a Silicon Valley-based innovation company founded by the American Medical Association (AMA), has spun out its second startup, First Mile Care, a preventive chronic care company focused on prediabetes.

Health2047 previously launched Akiri, a San Francisco-based company developing a blockchain-based network-as-a-service platform for the healthcare industry.

There are an estimated 84 million people living with pre-diabetes (higher-than-normal blood sugar level), according to the company. With $2 million in seed funding, First Mile Care is building a platform that will offer people coaching to make lifestyle decisions that can reverse prediabetes and reduce the risk that their condition will develop into type 2 diabetes.

The First Mile Care platform is based on the proven National Diabetes Prevention Program (DPP) method developed by the Centers for Disease Control and Prevention (CDC). The coaching program has been shown to reduce the incidence of type 2 diabetes by 58 percent compared to placebo.

In an interview with Healthcare Informatics, First Mile Care Founder and CEO Karl P. Ronn described First Mile’s approach. “The CDC developed an approved diabetes prevention coaching program that works, but it just hasn’t scaled,” he said. “Approximately 200,000 people have taken the program in the seven years it has been available. That leaves 84 million who haven’t. The question is: can we scale it?”

First Mile has set an ambitious goal of getting half of prediabetic population into a coaching program in the next 10 years. “That scale of intervention would change the chronic disease landscape in the United States, said Ronn, a former Procter & Gamble executive.

To accomplish that goal, Ronn said First Mile will have to make the coaching intervention as convenient as possible. “If I want you to do something weekly for 16 weeks and monthly or bimonthly for six months after that, it better be easy to do or you are going to drop out,” he said. “It has to be within 10 minutes of your home. The reason we are called First Mile Care is that rather than trying to figure out how we are going to get the last mile from our hospital or doctor’s office to your home, we are more interested in that first mile, and we need to be able to make it possible for you to get that coaching in that first mile from your home.”

An easy way to model that is ZIP codes, he said. There are 42,000 U.S. ZIP codes. “It has to be as convenient as regular weekly shopping trips and that means showing up in all those ZIP codes,” he said. “I could need 40,000 to 100,000 coaches to handle 84 million people.”

First Mile is building a technology platform to build a matching system between individuals and coaches much like Uber does between drivers and riders. The platform will also track progress and provide feedback to users and use analytics to discover best coaching practices. “The tech platform tis important in matching people and tracking progress,” Ronn said, “but really I am trying to build a relationship between you and your coach so you can get done what you need to do. I don’t want the technology to get in the way of that; I want it to support it.”

Another reason the timing is right for the company’s launch, he said, is that Medicare has recently started to pay for this type of coaching program and other insurers are starting to follow suit.

So what is next for First Mile? “Our seed funding will enable us to prove we can do what we said we could do in terms of develop this coaching process in the wild,” Ronn said, “and create the on-demand system. In the process of doing it, we want it to be effortless and delightful for the coach and for the person. We are in a learning model to prove we can do it. Within 18 months, we will be scaling it up. “



Related Insights For: Patient Engagement


Top Ten Tech Trends 2018: A Patient-Generated Health Data Future is Becoming a Reality

September 5, 2018
by Rajiv Leventhal, Managing Editor
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Providers are becoming more open to integrating patient-generated health data into clinical processes, but core challenges still remain

Editor’s Note: Throughout the next week, in our annual Top Ten Tech Trends package, we will share with you, our readers, stories on how we gauge the U.S. healthcare system’s forward evolution into the future.

Last fall, the Boston-based Partners HealthCare system launched a project with the aim to provide its clinicians and researchers with access to patient-generated health data (PGHD) from more than 420 consumer and clinical health devices. Working with Durham, N.C.-based vendor Validic, Partners Connected Health announced its plan to integrate PGHD into care plans and the electronic health record (EHR) throughout the Partners HealthCare network this year.

Of course, Partners HealthCare is far from the only organization working on PGHD projects across the U.S., but the initiative, along with many others, proves that patient care systems are turning more toward collecting and integrating key data from consumers that is accumulated outside of a facility’s four walls. Indeed, during the second quarter of 2018, wearables were one of the top-funded categories for digital health VC funding, according to a Mercom Capital Group report.

That said, plenty of fundamental challenges remain, even as the motivation to integrate PGHD into clinical processes increases. For one, patients must be willing to use the devices and be engaged in collecting their own data. In the Partners HealthCare/Validic project, the devices used were either ones that patients already owned and were comfortable with, or were purchased from Amazon or someplace similar. In previous PGHD initiatives, Partners HealthCare tried to get most patients to use a single device, but the results were less than ideal, recalls Kelly Santomas, R.N., senior director, Partners Connected Health, an arm of Partners HealthCare.

For this initiative, Santomas’ team particularly wanted to collect data on patients’ blood pressure and glucose levels, activity and weight. She notes that the data is being integrated into providers’ EHRs, and that incorporation has not been difficult. The challenge with this project, so far, she says, has been fighting the perception that the patient data is not valid.

For instance, Santomas offers, if a patient is taking his or her blood pressure at home, and then that recordation is sent to the EHR, some providers might see that number as invalid. “But that’s a misconception,” she asserts. “It’s interesting, because we send patients home right now, tell them to buy a blood pressure cuff, write down their levels, and email it to us. So how do we know that is valid? You are assuming patients will do the right thing and give the right information, and working within [providers’] perceptions [on that] is the biggest challenge,” she contends.

Kelly Santomas, R.N.

Brian Modena, a clinical researcher at the Scripps Translational Science Institute who has researched the effectiveness of mobile health data gathered outside the doctor’s office, also believes that integrating this information into EHRs “is easily doable.” But Modena doesn’t see this being done industry-wide and he says that’s because “healthcare is always so slow to adapt, and people are used to the old way.” The “old way,” he says, involves a nurse taking a patient’s blood pressure and handing that off to the doctor, who then gives the patient advice. “The question becomes, are doctors going to look at PGHD? And if so, how often will they use it? What type of format should you put it into so doctors can easily process it?”

To this end, Santomas believes that physicians genuinely do want to incorporate patient-generated data, but it needs to be presented in a way that makes sense and is actionable to them. “They don’t have the time to sift through [non-valuable] information. So we need to make sure we are providing the data in a format that makes sense, is actionable, and benefits the patient in the long run,” she says.

UPMC Innovating Toward a Patient-Centered Future

In 2017, the University of Pittsburgh Medical Center (UPMC) said it would be investing in Xealth, a digital health startup that offers a digital prescribing platform, allowing clinicians to prescribe patients digital educational content, disease management apps and monitoring devices.

Rasu Shrestha, M.D., chief innovation officer and executive vice president at UPMC Enterprises—the health system’s innovation hub that funds promising health tech ventures—says that one of the primary reasons for the investment was to solve what he believes is a major barrier in advancing forward with patient-generated health data: an EHR divide that exists between providers and patients.

As Shrestha sees it, on one end, clinicians spend a great deal of time in their EHRs, as that’s where they document and how they bill. “Essentially, it’s how they provide care, and these care pathways and decisions they make are all documented and contained in the EHR,” he says. But at the other end, patients don’t live in the EHR. “At best, they maybe live on their phones, and they might use apps that might be connected to mobile devices. But these apps and devices are separate and are different from the EHR, and they don’t communicate well with each other. So you have these two divides, these two worlds, that are coexisting in these two different spheres,” Shrestha says.

Rasu Shrestha, M.D.

What’s more, if patients do download a health data app, it’s likely they won’t use it very frequently, and even if they do, they might also be fitness fanatics and own Fitbits and Apple Watches, meaning there is a lot of data that is remaining in the confines of the patients, apps, and devices, and in no meaningful way is being made back to the physician’s eyeballs, explains Shrestha. “Patients might make mention of this [data] during an annual visit and maybe they even take printouts. But that’s the extent of the interaction we see today,” he adds.

Bridging that divide was a big factor in the work UPMC is doing with Xealth. Shrestha says that the two organizations are co-creating a set of capabilities that will allow for clinicians who live in their EHRs to directly prescribe apps to their patients, much like how they are prescribing medications in the EHR today.

The prescribed apps then appear on patients’ phones, and with patients’ permission, a bi-directional interface can be created between apps and devices—through the patients’ phones, to the EHR. “Data would then be consumed in a matter that the EHR could understand,” Shrestha says.  “All of the readings and the data elements would then be available to the clinical decision support systems within the EHR, or through various means into the database of the EHR itself. That is something that is noble and unique, and this needs to be a standard of care and best practice across the board,” Shrestha asserts.

And UPMC physicians are embracing the validity and quality of the data, too, he adds.  Up until as recently as a year ago, he notes, physicians were resistant to engaging patients and consumers. But what were once disconnected experiences and data that simply was overbearing for clinicians in the little amount of time they had has now become data that is easily consumable and digestible for them, Shrestha says. “I am seeing that change happen in front of my very eyes.”

What Could Apple’s Role Be?

In June, Apple introduced a Health Records API (application programming interface) for developers and researchers with the goal “to create an ecosystem of apps that use health record data to better manage medications, nutrition plans, diagnosed diseases and more.”

The Health Records feature allows patients of hundreds of hospitals and clinics to access medical information from various institutions organized into one view on their iPhone. “For the first time, consumers will be able to share medical records from multiple hospitals with their favorite trusted apps, helping them improve their overall health,” Apple officials stated at the time. And starting this fall, Apple officials say that developers building health apps can individualize experiences based on the user’s unique health history.

Shrestha, for one, says he’s excited about the way Apple is approaching things. “It’s a really good thing that there is now one place on patients’ iPhones where they can collect information that belongs to them from any health institution that they have their data in, and that they can also send data back to the hospital. That’s a big deal for patients,” he says.

But, he adds that it shouldn’t be just about the Apple ecosystem and iPhones, because “There is also a whole ecosystem of patients and consumers on Android devices and others.” So, Shrestha asks, “How do we make sure we enable a much broader view to apps that may reside across other ecosystems and allow for that bi-directional interface to happen?”

In the end, Partners Connected Health’s Santomas believes that it’s realistic to think PGHD can soon be used to improve clinical outcomes. “Ideally, I’d love to see a world where the patient can access the healthcare system virtually, on their phones and computers, and as a provider I can sit there and talk to patients, pull up their record, and pull up their PGHD so I can have a sense of what’s going on while they’re at home,” she says. “All of that works together and gives us a much more holistic view of what’s going on with the patient versus just these small episodes of when I see them only in the office. That’s my vision.”

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