Tracing the Rise of Patient Experience

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America’s health care system is shifting to value-based delivery and reimbursement models. Overall, this migration is considered a step in the right direction because it trims the waste created in the fee-for-service model by emphasizing patient outcomes and endowing clinicians with “skin in the game”—the mechanisms and incentive—to coordinate care to reach the desired outcomes. A profusion of new research, demonstration projects, care and reimbursement models, metrics, and technological advances are designed to keep us on the path of improving quality of care and reducing health care costs. But, quality and cost of care are only two of the three arms of the health care “triple aim.” The third—improving the patient experience of care—is also taking root. Patient experience will play an increasingly more prominent role in health care reform for a couple of important reasons. First, care at the patient level is the heart of health care. As we reconfigure the delivery of care, we want to ensure that we are improving the quality of that care as measured by the results and also by the person receiving the services. By measuring and tracking patient experience, in addition to outcomes, we can learn more. More data means more ways to identify successful programs, adjust care, and build on past experience. Gauging patient experience can also keep the outcomes pendulum from swinging too far in one direction. Providers, who are now more accountable, are naturally focusing on compliance with processes and avoiding costly outcomes, such as complications and readmissions, to meet new targets. By checking in with patients, providers can safeguard that quality isn’t lost in the pursuit of results. Finally, as value-based programs continue to evolve, patients will be called upon to be more active consumers of health care, making choices about coverage, services, and providers. The Medicare Star Rating system is a good example of an existing platform poised for expansion. There will undoubtedly be others—both public and private—designed to inform patients as the transition to consumerism continues. But how do we get from Medicare Star Ratings to patient experience data that improves care? In this article, we’ll explore the beginnings of the patient experience movement and where it is today. We will also look at how patient experience programs can improve both the quality of care and the level of patient satisfaction in the delivery of home and specialty infusion by telling you a little about how our organization, Heritage Biologics, incorporates patient experience into its care model.

Measure and Report

The concept of measuring a patient’s satisfaction with his or her medical care predates health care reform, the triple aim, value-based purchasing, and the many other current trend lines with which it coalesces so well. Like most health care movements, patient experience has its roots in the acute care setting, but becomes relevant to By Christopher Kennedy, MSM, and Amanda Walker, BSN, RN, CPXP January/February 2017 27 us as the continuum of care expands into the outpatient site of care. The Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS, pronounced “H-CAPs”) survey is probably the most widely recognized instrument for collecting data on patients’ perception of care. The questionnaire was first implemented by the Centers for Medicare & Medicaid Services (CMS) in October 2006 after four years of consensus building and development that involved consumers and stakeholders, including national bodies such as the Agency for Healthcare Research and Quality (AHRQ) and the National Quality Forum (NQF). The 32-item survey, also known as the CAHPS® Hospital Survey, represents the first national standard for collecting and publicly reporting information about patient experience of care. The driving principle behind HCAHPS was that standardized data collection allows for objective and meaningful comparisons. Accordingly, public reporting of measures was added in 2008 when CMS began posting data on 11 HCAHPS measures for U.S. hospitals on its Hospital Compare website. In 2015, the agency added Star Ratings, which summarize the HCAHPS results in a familiar consumer-friendly format. Publicly reported data is not only a transparent demonstration of quality and a facilitator for consumer choice, it can affect a hospital’s bottom line. Medicare’s Hospital Value-Based Purchasing (VBP) Program ties a portion of its performance-based reimbursements to domains that are evaluated using HCAHPS scores. An institution can increase its reimbursement rates by exhibiting improvement on its HCAHPS measures over time—Medicare’s incentive to improve quality.

SPs find themselves in an area of healthcare that can “Bridge the Gap” for patients, and provide a continuation of the PX programs that partnering hospitals have invested so heavily on. More importantly, SPs can remove the barriers that keep patients from reporting that they “Strongly Agree” they understand their care. The healthcare continuum relies on effective collaboration across all providers involved in a patient’s therapeutic care plan. This sounds like a relatively simple task, but as providers, we know it is far from easy to achieve.

RXPX is a natural partner to inpatient PX programs. We have developed a software program called “rarecare” that allows our nurses and pharmacists to capture Clinical, Quality of Life, RXPX, and Patient Reported Outcome Measures (PROMs). This data allows us to identify areas to improve in patient care that previously went undetected. From patient education to medication adherence to social issues, the data collected provides an entirely new perspective on a patient’s journey. The key is actually having the data and turning it into actionable insights.

Consistency Compared to Service Excellence

Even before the government’s interest, a small but considerable patient experience movement sprang from the idea that health care lacked a customer-focused approach. Beginning in the late-1980s, forerunners like Pensacola Baptist Hospital, the Mayo Clinic, and Cleveland Clinic, which was the first to have a dedicated patient experience department, realized that patient satisfaction could be a competitive advantage in an increasingly commoditized industry. “They were seeking a way to stand out in their communities, so they chose to focus on compassionate care,” observes Sean Rodriguez, MBA, Chief Experience Officer at Barnes-Jewish Hospital in St. Louis, Missouri. “Since the earliest days of medicine, there’s been an inherent knowledge that good, compassionate care is the ideal. From a business standpoint, it’s a distinction that doesn’t involve a great deal of capital outlay. In addition, understanding patient perception of care allows you to improve care and achieve better outcomes.” Rodriguez says that HCAHPS added energy to an existing effort by tying reimbursement to patient feedback to address quality and safety, but the system falls short of promoting service excellence. “The survey methodologies and motives differ,” he observes. “HCAHPS survey questions are constructed for ‘always, usually, sometimes, or never’ responses. That can drive consistency, but not necessarily excellence. Patient satisfaction questions, on the other hand, ask patients to rate different aspects of care with ‘excellent, very good, good, fair, or poor’ as responses. One method seeks to determine how often something is done (consistency), while the other gauges how well (service excellence).” Patient discharge instructions are a good example of the contrast, according to Rodriguez. “The question on the HCAHPS Survey for Discharge Instruction is: During this hospital stay, did you or your family member get information in writing about what symptoms or health problems to look out for after you or your family member left the hospital? We find this to be very different than the question on our service excellence survey: How would you rate the instructions given to (you/your family member) upon discharge?” Rodriguez goes on to explain that while many of their patients acknowledge that they receive instructions on the HCAHPS survey, results from the satisfaction survey indicate that there is still work to be done on improving these instructions. “On the discharge questions we get great results on HCAHPS. But from a patient satisfaction perspective, the result we achieved on our service excellence survey points to more work we need to do to ensure simpler and clearer instructions for our patients and families. ”The responses, which influence how hospital resources are directed, should lead to meaningful improvements. “Medicare gives you the most points, and increases reimbursement, for improving the domain that scored the lowest, but that domain may not necessarily rank high in importance to the patient. The challenge is how to balance that,” Rodriguez says. “We want to maximize our reimbursement, but we also want to improve how we partner with our patients and families to provide the best care possible and how the community views us.” Barnes-Jewish Hospital, which tracks both sets of metrics, has found that by focusing on improving its patient satisfaction scores, its efforts can simultaneously have a positive impact on 90% of its HCAHPS scores. “If we do it the other way around and focus on improving HCAHPS, we only impact 60% of our service excellence metrics,” he notes. “So we lead with patient satisfaction and the rest follows.”

Definition for a New Day

Despite the historic connections between patient perceptions and quality, until recently there was still significant divergence on what constitutes “patient experience.” In 2009, less than half (45%) of U.S. hospitals had a formal definition.1 Since 2010, The Beryl Institute, a membership-based organization, has worked to generate, collect, and share ideas and proven practices on patient experience improvement. Published in collaboration with the Institute, the 2014 inaugural issue of Patient Experience Journal parsed the many existing ideas of patient experience, domains used for measurement, health care touch points, type of interactions, and other overarching themes. The article itself (available for download at: is a useful primer. To develop the Institute’s definition of patient experience, they formed a work group of patient experience leaders from a cross-section of health care organizations. The group shared perspectives, insights, and backgrounds on what patient experience meant to them and collaboratively created this definition (see box on this page). It’s important to note that this definition includes the entire patient journey, rather than focusing on one moment. The viewpoint emphasizes that service quality should be marked by seamless care where all providers are working collaboratively to improve the standard of care. The underlying principles are that:

1) there’s a correlation between experience and outcomes, and

2) the perception of care doesn’t start and stop with the hospital.

For providers of home infusion care, measurement of patient experience has long been a requirement of accrediting bodies such as the Joint Commission, Accreditation Commission for Health Care (ACHC), and the Community Health Accreditation Program (CHAP); however, it is not yet formally required as a condition of Medicare participation in this site of care. “Taking time to define what we mean by patient experience at all touch points on the care continuum is critical,” offers Jason A. Wolf, PhD, CPXP, President of The Beryl Institute and Founding Editor of Patient Experience Journal, “but we must not stop there.” He adds, “To realize the full potential of the focus on experience, organizations must recognize, acknowledge, and elevate the very outcomes this focus leads to clinically, financially—and in terms of both loyalty and reputation.” By defining and focusing on patient experience in this way, The Beryl Institute and its member community are aligning their movement with the arc of health care evolution driven by policymakers and market forces alike. The latest reimbursement models pursue cost savings by moving health care services to the post-acute setting and seek efficiencies by encouraging care management and the streamlining of services to more accurately meet individual patient need. It is the collection and reporting of the patient’s experience with such shifts that ensure the consumer’s perspective is part of the equation when assessing the overall impact of such reform initiatives.

Value-Based Reimbursement

A good reflection of this paradigm change is the bundling of payments. Medicare’s Bundled Payments for Care Improvement (BPCI) initiative links payments for the multiple services beneficiaries receive during an episode of care, such as hip and knee replacement. Under the voluntary demonstration project, the admitting hospital is accountable for overall spending, not just for the care received in the hospital but for physician, rehabilitation, nursing facility, and other services provided for a 90-day “episode” after discharge. In announcing a new cardiac care phase of the program, the Centers for Medicare & Medicaid Innovation asserted that, “Research has shown that bundled payments can support providers—hospitals, physicians, post-acute care providers, and other clinicians—in working closely together to provide better care at lower cost.” Bundled payments, which have existed in pockets of the health care system for some time, have the potential to integrate health care, make providers accountable for outcomes, and reduce costs, according to Mahek Shah, MD, Senior Researcher at Harvard Business School. Shah works directly with Michael Porter and Bob Kaplan on the Value-Based Health Care Initiative. “We are moving to value-based reimbursements because our costs are unsustainable,” he observes. “But to maximize value for better outcomes, we need to change how we organize care delivery.” Shah explains that our current system is set up by medical specialty, not by medical condition, causing patients to coordinate their own care from a potentially wide range of specialized service providers. “A diabetic patient, for example, has a primary care physician, but may also be referred to an endocrinologist, a nephrologist, an ophthalmologist, and specialists depending on disease progression. If we aligned that care by centers of excellence—Harvard calls them integrated practice units (IPUs)—we can realize better outcomes and better meet the patient’s needs.” This type of patient-centered care increases value to the patient as well as the overall system, which is what Shah and his colleagues believe is needed. “We define value as outcomes that matter to the patient over the total costs to deliver those outcomes,” he says. “In simple terms, better outcomes are achieved at lower cost.” Payment reforms are forcing providers, especially large health systems, to map their processes and examine their actual cost of care delivery, according to Shah, noting an important distinction between charges and costs. “Charges have often been the proxy for costs. We advocate using time-driven, activity-based costing to calculate the actual cost of care delivery. That way providers can understand resource utilization,” he says. Understanding is the critical first step in making adjustments that optimize delivery and offer more value. “The relationship between providers and patients improves tremendously with this value-based care delivery model,” adds Shah. “Continuity of care is so important. Patients want their care to feel well coordinated—like their providers are working for the best outcome for them.” Patient experience improves with good coordination, and so do outcomes.2 “The central theme for our value agenda is that we’re maximizing value for the patients. They are at the center of what we’re doing,” continues Shah, noting that patient reported outcome measures (PROMS) will become more common in assessing the impact an episode of care has on patient outcomes from the perspective of the patient. “PROMS are very i m p o r t a n t to patient experience. Imagine you have a hemophilia patient who loves to participate in sports, which can present risks. Not only do you want to ensure his or her biomarkers are in the healthy range, but you want to get your patient back on the soccer field,” he explains. “The care team needs to know that so they can direct the patient’s care with that outcome in mind.” “It’s not as easy to bundle payments for chronic and preventive care as it is for episodic care, like a hip or knee replacement,” notes Shah. “But payers are showing interest because it promotes overall population health. As the population gets healthier, their overall costs are decreased.”

Collaborating Across the Continuum

While bundling and other payment reforms are encouraging more formalized structures for care across the continuum, providers have long desired—and sought out—partners in other sites of care that act as an extension of their own services. From their experience, it’s better for the patient. Typically, adding patient experience findings to the partnership only reinforces that belief. “Patient experience is when the care starts in my office and goes into the patient’s home. The continuum is one in the same—there’s no distinction between locations,” observes D. Kyle Hogarth, MD, FCCP, a pulmonologist at University of Chicago Medicine, who specializes in alpha-1 antitrypsin deficiency. “The expectation is that the communication between providers is there. It’s comprehensive care—all centered around the patient.” To Hogarth, that means stepping in when obstacles get in the way of delivering care. “I once had a patient with an implanted port, whose infusion times kept getting longer and longer—from what should be 20 minutes to 90 minutes,” he explains, noting the patient off-handedly mentioned it during a clinic visit. “I was immediately concerned. We performed an ultrasound and it turns out that he had a large occlusion, needed to be placed on blood thinners, and developed a pulmonary embolism. No one had communicated to me that his infusion time had more than quadrupled!” Better care management can prevent complications that lead to unnecessary utilization of the health care system, driving up costs and lowering patients’ perceptions of care. But, pursuing the goal of seamless care with the patient at the center can do all that plus optimize outcomes, Hogarth points out. “I see patients a few times a year, but the home infusion provider sees them more often and, therefore, is in a position to spot problems before I can,” he continues. “If January/February 2017 33 Mr. Jones is having trouble breathing, and from past experience we know that he usually waits until he’s in the beginning stages of an exacerbation to tell anyone he’s having problems, I want to know about that,” says Hogarth. “I want a provider who interacts with my patient and gives me feedback. The data should come back to me as if the patient were in my office,” he explains. Essential data to Hogarth includes vital signs and weight, infusion time, patient compliance, and quality of life scores—preferably trended so he can easily pick up on changes.

Bridging the Gap

Home infusion providers are now exploring technology solutions to capture more information about each patient’s clinical status and experience at multiple points during the care process. An important requirement for this technology is the ability to transfer information to other members of the patient’s health care team in real time. For example, at our company, Heritage Biologics, we created a patient portal that can be accessed by prescribing physicians for just this purpose. Similar to an electronic medical record, our “rarecare” electronic portal allows our nurses and pharmacists to capture clinical, quality of life, patient experience, and PROMs measures. Not only is the data informative to other providers on the continuum, it allows us to identify areas to improve patient care that previously went undetected. From patient education to medication adherence to social issues, the data collected provides an entirely new perspective on a patient’s journey. This collaborative strategy is rooted in measuring, reporting, and sharing outcomes. But the key is actually having the data and turning it into actionable insights. Traditional metrics such as compliance and completion of therapy are based around the medications dispensed—not on actual health outcomes that put the patient at the center. Like many home and specialty infusion providers, we’ll jump in when obstacles arise—even if they are not in our domain—to ensure that the patient’s experience is seamless. As a rare disease specialty pharmacy provider, that’s a necessary role. In one common example, we work with patients’ insurance companies to get them oral medications we know they need. Even if we’re not the pharmacy filling the prescription, we recognize the oral drug is essential to their clinical outcomes and overall perception of care. The Heritage Pharmacy Patient Experience (RXPX) program is headed by one of the first Certified Patient Experience Professionals designated through the Patient Experience Institute, a non-profit sister organization of The Beryl Institute. Traditional acute care patient experience programs have advanced health care in numerous ways, and we sought to build on those efforts by transitioning discharged patients from one process to the next. The resulting feedback and insights are then shared across the health care divide so that improvements can be made in each site of care as needed. The home and specialty infusion field is an area of health care that can bridge the gap for patients, by providing a continuation of the patient experience programs in which partnering hospitals have invested so heavily. Formally incorporating patient experience data into operations and outcomes measurements may be somewhat new to this field, but the foundational concepts are not.