Implementing Quality Measures for Accountability in Community-Based Care for People with Serious Illness Proceedings of a Workshop (2018) / Chapter Skim
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. In an effort to better understand and facilitate discussions about the challenges and opportunities related to identifying and implementing quality measures for accountability pur poses in community-based serious illness care, the Roundtable on Quality Care for People with Serious Illness of the National Academies of Sciences, Engineering, and Medicine held a public workshop on April 17, 2018, in 1 The planning committee's role was limited to planning the workshop, and the Proceed ings of a Workshop was prepared by the workshop rapporteurs as a factual summary of what occurred at the workshop.
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,2 the roundtable aims to foster ongoing dialogue about crucial policy and research issues to accelerate and sustain progress in care for people of all ages experiencing serious illness. In his introductory remarks to the workshop, James Tulsky, chair of the department of psychosocial oncology and palliative care at the DanaFarber Cancer Institute, thanked the Gordon and Betty Moore Foundation for supporting the workshop and other ongoing efforts to improve quality measurement.3 He pointed out that such work is essential to providing the best care to people with serious illness, reminding the workshop audience, "As we all know, if you do not measure it, you cannot improve it." Tulsky went on to note the difficulty of measurement for the serious illness care population, but added that is why "it is important that we talk about and think deeply" about this topic.
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Palliative care is provided by a team of palliative care doctors, nurses, social workers, and others who work together with a patient's other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment (CAPC, 2018; NASEM, 2017)
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Kelley also pointed out that the goal of the workshop was to build on lessons learned and think about actionable next steps "rather than simply admiring the problem." Quality Measures for Accountability in Community-Based Serious Illness Care The workshop aimed to contribute to ongoing efforts to implement meaningful measures for accountability purposes for people with serious illness cared for in community settings. Workshop presentations and discussions made clear that this is neither an easy nor straightforward process, as a number of speakers noted a broad range of issues and challenges to be addressed, not least of which is an absence of agreement as to what quality is and how to most effectively measure it.
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Patients with serious illness tend to have multiple chronic conditions and are seen in multiple settings by a diverse set of health care providers, yet the overarching goal is to improve care for patients in every care setting. Measures alignment presents its own set of challenges, however, as perceptions of quality measurement differ across specialties given variations in care settings and patient populations.
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Speakers addressed the challenges and opportunities of implementing quality measures in the health plan/health system context, including integration of quality measures into payment contracts and alignment of quality measures with broader organizational goals. Shantanu Agrawal, chief executive officer and president of the National Quality Forum (NQF)
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The workshop speakers' presentations (as PDF and audio files) have been archived online.5 THE PATIENT–FAMILY PERSPECTIVE Robert Bergamini, medical director for palliative care at Mercy Clinic Children's Cancer and Hematology and chair-elect of the Supportive Care Coalition, opened the workshop with a session that focused on the patient–family perspective.
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• Engage patients when implementing measures and think about mea sures that would make the patient's experience better. If it does not matter to patients, it should not matter.
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(Lynn) Implementing Meaningful Quality Measures for Accountability Focus on implementing measures to drive improvement that are • scientifically acceptable, backed by evidence linking the measures to actual outcomes, reproducible, operationally defined, feasible, pow ered by data that can be captured at an acceptable cost and burden in the process of clinical care, are actionable to address gaps in care quality, and responsive to changes in the system.
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• Recognize that, until measures reach the point where they account for every possible contraindication or exclusion, it will be unrealistic to expect 100 percent as a goal for that measure, which allows for a more relaxed view of quality measures and eliminates the fear of having to be perfect. (Krebbs)
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• Given that Medicare Advantage plans' payment is weighted by case mix, weight quality measures more heavily based on high-need patients.
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• Standardize data collection for the assessment of functional status in the post-acute world outside of the hospital. Currently, nursing homes, home health, and hospices all collect different data sets using different instruments.
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Working with Health Care Organizations and Payers • When palliative care is provided within an organization's goals, align structures so they are not competing with capitated payment, r eimbursement structures, or other programs. (Fields)
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14 IMPLEMENTING QUALITY MEASURES FOR ACCOUNTABILITY p ediatrician dismissed Herrera's concerns as the ill-informed worries of a 19-year-old mother who was likely suffering from postpartum depression. A second pediatrician also attributed Herrera's concerns to her young age, told her she was expecting too much from her daughter, and referred her to a mental health specialist.
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In his view, clinicians are accustomed to diagnosing and treating acute illness and getting through a specific episode of illness, but are not well versed in helping seriously ill patients with multiple issues transition from one "compartment" to another. Darien also said she does not believe time is always the answer, just as money is not always the answer.
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"People will remember those words forever." Bergamini closed the session, noting it set "a great tone for the day as we try to get away from the checkboxes and get to what matters to patients and families." GAPS, CHALLENGES, AND OPPORTUNITIES IN IMPLEMENTING QUALITY MEASURES FOR ACCOUNTABILITY In her introduction to the first panel session, Amy Kelley, associate professor at the Icahn School of Medicine at Mount Sinai, pointed out that the focus of the workshop's discussions is on implementing measures that exist today and not on developing new measures, though she acknowledged that work remains to be done in that area. She then offered a conceptual definition that holds serious illness to be a health condition that carries a high risk of mortality, though not bound by prognosis, and either negatively affects a person's daily function or quality of life or excessively strains their caregivers (Kelley and Bollens-Lund, 2018)
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They are found in multiple settings and are being cared for by a diverse set of health care providers." She noted that it is hard to account for all of those who are experiencing serious illness, and yet the goal is to improve care for all of them in every setting. Those individuals who are in specialty palliative care and hospice provide some information, but that denominator has a downside because it only captures those people who have gained access to those parts of the health care system.
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For example, in an attempt to improve quality of care, the Centers for Medicare & M edicaid Services (CMS) established Nursing Home Compare, a combination of measurement sources including safety inspection results, a mandated minimum data set that uses EHR data, staffing reports, and claims data to produce a publicly available star rating8 for all Medicare and Medicaid 8 For additional information, see https://www.medicare.gov/nursinghomecompare/Data/ About.html#technicalDetails (accessed May 14, 2018)
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,9 which is providing lessons on how to expand across settings; and the Hospice Item Set,10 which has measures that are applicable directly to serious illness care. Hanson pointed to the most important lesson as the need to "keep our eyes on the prize." The prize, she emphasized, is improved care and "not perfect measurement." Challenges in Implementing Quality Measures for Serious Illness Care For Joan Teno, professor of medicine at Oregon Health & Science University, there are several challenges to implementing quality measures for serious illness care.
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forms that are completed, even though a small study had shown that while nearly all have a POLST form, only a few nursing home residents remembered talking about the form. "You may complete the POLST form, but if you do not have that conversation, you are going to harm patients," warned Teno.
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Helen Burstin, executive vice president and chief executive officer of the Council of Medical Specialty Societies, discussed several other measurement challenges. Burstin emphasized the importance of removing measures that do not add value and do not drive meaningful improvement, creating greater alignment from various stakeholders in focusing on the entire population of those with serious illness and not only those in palliative care or hospice.
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She gave the example of seriously ill patients, such as those with heart failure, who are seeing a large number of specialists, but have not enrolled in a hospice program. Kelley underscored the need to identify the population of patients with serious illness with the data that is available before starting to look for patient-reported measures and other data sources.
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To address these challenges, Kelley and her research team have developed a nested population model of serious illness (see Figure 1) using a combination of diagnoses, self-reported functional measures, and utilization data (Kelley et al., 2017)
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, utilization (based on health care utilization in the past 6 months using acute care hospitalizations and home health and skilled nursing facility claims) , and measures of need (identified through evaluation of alternative payment model proposals and expert panel consensus)
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Concluding the session, Kelley made note of the Serious Illness Quality Alignment Hub,13 a 3-year effort by the Center to Advance Palliative Care and NQF to improve quality of care for people with serious illness by integrating measures, standards, and best practices into existing systems. The idea driving the Hub, she explained, is to leverage the power of regulation and financing to create incentives for adherence to best practices.
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INNOVATIVE APPROACHES TO IMPLEMENTING QUALITY MEASURES FROM THE PERSPECTIVES OF HEALTH CARE PROVIDERS AND PAYERS From the perspective of those who function at the front lines of care, whether they are providers or patients, people often seem to be talking past one another when conversation turns to measures and how best to use them, said Richard Baron, president and chief executive officer of the American Board of Internal Medicine. Baron began his remarks with several key messages.
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Taking that approach, he said, is more likely to lead to measures that matter and more likely to engage providers. Lessons from Blue Shield of California's Palliative Care Program In 2015, California passed a law, SB-1004, requiring all Medicaid managed plans in the state to provide access to community-based palliative care.16 At the time of the workshop, Blue Shield of California was 4 months into implementing its program, explained Torrie Fields, the organization's senior program manager for advanced illness and palliative care.
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Blue Shield of California offers palliative care across the continuum of care, starting with advance care planning and at the time of diagnosis. It makes referrals to community-based palliative care providers in the outpatient and home settings, and it has worked with all its tertiary hospitals to develop inpatient palliative care programs, particularly when it has an established accountable care organizations arrangement.
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To standardize the palliative care clinical model, Blue Shield of alifornia follows the National Consensus Project guidelines (NCPQPC, C 2013)
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create a serious illness accreditation for health plans and accountable care organizations to improve the continuum of care. Fields added that Blue Shield of California has also collaborated with the Center to Advance Palliative Care to train its case managers in serious illness communication.
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"Our population, because we are further upstream, is chronically comorbid and chronically seriously ill, so the providers need to have this ‘hybridness' of good internal medicine, geriatrics, and family medicine with a little bit of ‘palliativist' work," Lanz clarified. Care teams do have palliative care specialists, but they also need team members with a myriad of skills to meet
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Aspire Health also works closely with community-based home health care agencies, hospices, places of worship, and Meals on Wheels to provide additional support that families need for the program to be most effective. The program's patients have a mix of diagnoses with varied and largely unpredictable disease trajectories, said Lanz.
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Second, she struggles with measuring the quality of the serious illness conversations that team members have with patients. Third, given that national palliative care quality metrics focus on process -- was a pain assessment completed, for example -- versus outcomes, she wonders how to measure the true quality of care.
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Of the 220 hospitals that responded, only 49 percent said they offered a palliative care program. Of those that did have a program, 92 percent reported they used interdisciplinary teams to provide care, though only 70 percent had a policy defining how palliative care was structured and delivered in the facility.
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The second requirement was to have a leadership-endorsed policy that outlines what palliative care means for the organization and how it will be used. The third requirement was to have an educational program for the clinical staff that outlines what the policy says and trains them on how palliative care can benefit them, when to ask for palliative care consults, and how to incorporate palliative care team members into the teams that care for their patients.
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R eferring to Baron's earlier comment that providers feel that "measures are done to them rather than with them," Krebbs emphasized that "we need to make sure we are not forcing quality measures on each other. It is something that has to be done in collaboration with all the stake olders involved." h Fields responded that they had one "very forward-thinking, innovative leader at Blue Shield of California, who started to think about what measures matter, specifically starting with hospice measures and then looking upstream to palliative care." She noted that was in 2011.
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Prior to the redesign, endorsement took an average of 20 months, which he acknowledged was too long to wait for health care quality measurement in general, and for serious illness care in particular. Agrawal explained that NQF has moved to a model where there are two endorsement cycles per year, each lasting approximately 7 months, with overlap between the two cycles (see Figure 3)
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38 FIGURE 3 The redesigned consensus development process for measure endorsement at NQF features two cycles per year. SOURCE: As presented by Shantanu Agrawal, April 17, 2018.
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FIGURE 4 NQF's prioritization initiative process. 39 SOURCE: As presented by Shantanu Agrawal, April 17, 2018.
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He explained that although the general assumption might be that hospitals are inherently good at quality improvement, for example, his experience as an emergency medicine physician and health care consultant is that many institutions lack the core capabilities to engage in continuous improvement activities and understand the true purpose of measures. As an example, he recounted a recent experience when he was working a shift in the emergency department and was caring for a patient with decompensated heart failure who needed to be admitted to the hospital.
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FIGURE 5 NQF's measure prioritization criteria. 41 SOURCE: As presented by Shantanu Agrawal, April 17, 2018.
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Agrawal and his colleagues at NQF are asking how they can help build provider capabilities for quality improvement by connecting NQF's measurement work to the frontlines and producing the change everyone wants to see. As a first step, NQF recently released a playbook on opioid stewardship and one on shared decision making in health care, and will release a playbook on antibiotic stewardship in the long-term care setting later in 2018.
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Responding to a comment from a workshop participant about the tension between quality improvement and accountability and the barrier built into publicly reported accountability measures, Agrawal noticed that quality measurement and improvement was a great exercise that health systems either took seriously or not very seriously until the accountability paradigm came along. "That notably changed the dialogue and put everybody on a similar page to try to improve quality," he said.
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He noted the importance of addressing these issues: "Otherwise it will be more data in a black box and it will not be clear what it is measuring or how you are actually getting improvement from it." INNOVATIVE APPROACHES AND POLICY LEVERS FOR IMPLEMENTING QUALITY MEASURES FROM THE PERSPECTIVES OF PUBLIC PROGRAMS In his introduction to the third panel session, moderator Eric Schneider, senior vice president for policy and research at The Commonwealth Fund, noted that the Fund is part of a six-foundation collaborative developing a playbook of evidence-based models of care for high-needs, high-cost patients.18 Referencing the government's important role in paying for health care for those with serious illness, Schneider noted that the government also supports health care performance measurement and accountability, infrastructure, data assets, and standards. Based on his three decades of experience as a researcher in measurement and accountability, Schneider observed care for the seriously ill is still operating with "version 1.0" of the performance measurement system because of the attempts to minimize the burden of measurement and use existing data.
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Meaningful Measures Initiative at CMS In 2017, CMS launched the Meaningful Measures Initiative19 in an effort to develop an innovative approach to meaningful outcomes. This initiative, explained Reena Duseja, director of the Division of Quality Measurement at CMS, has four key patient-centered aspects: empowering patients and doctors to make decisions about their health care; supporting innovative approaches to improving the quality, accessibility, and affordability with measurement; ushering in a new era of state flexibility and local leadership; and improving the experience for CMS beneficiaries and their caregivers.
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. The framework includes the perspectives from experts and external stakeholders, including the Core Quality Measures Collaborative,20 the Agency for Healthcare Research and Quality, and others.
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FIGURE 6 Focus areas for the CMS Meaningful Measures Initiative. 47 SOURCE: As presented by Reena Duseja, April 17, 2018.
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The priority domains for this funding opportunity include clinical care, safety, care coordination, patient and caregiver experience, and population health and prevention. CMS has also identified specific medical specialties with pronounced measurement gaps, including orthopedic surgery, pathology, radiology, mental health, oncology, and emergency medicine (CMS, 2018b)
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As a final note, Kirsh pointed out that, in an effort to improve care, the VA created a patient portal to counter misinformation, encourage shared decision making, and engage patients in the way they receive care and work with their providers to set goals. Medicare Advantage Programs Developing quality measures that cover everyone is difficult enough, but it is particularly complicated to develop measures for subpopulations, such as high-need patients.
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In addition, patients s go from care setting to care setting, or "silo to silo" as Mor termed it, so while measures tend to be monolithic, accountability should span the entire continuum of care. Looking at the Medicare Advantage Plan's 5-Star rating system, for example, Mor noted that the system is a composite of more than 40 different parameters and types of quality measures, ranging from the CAHPS score to single chronic disease management measures.
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, the Outcome and Assessment Information Set, and the Inpatient Rehabilitation Facility–Patient Assessment Instrument and Medicare Provider Analysis and Review data sets. Out of this high-need population, 1.53 million were enrolled in Medicare Advantage plans.22 An analysis showed that hospitalization and mortality rates were substantially higher among the identified high-need population (see Figure 8)
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SOURCE: As presented by Vincent Mor, April 17, 2018. A closer look at who was leaving plans found that patients who have had a skilled nursing facility or home health experience were much more likely to leave (Rahman et al., 2015)
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Someone has to be responding to these quality metrics, not just individual doctors but groups of doctors, since doctors have individual relationships with patients." To address this problem, Mor put forth what he called a "modest proposition." He said, "we are looking at alternative payment models and they require value." Population composite metrics are not sufficient for the task because they do not provide information specific for high-need patients who need higher quality care, which poses a challenge for the meaningfulness of quality metrics. Rather than developing new measures, one solution might be to weight existing quality measures more heavily based on highneed patients because Medicare Advantage plans' payment is weighted in a similar fashion by case mix.
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The bottom line, she emphasized, is that "any process to implement quality measures needs to include a strategy to effectively engage with the relevant congressional committees and the staff with the goal of aligning federal reimbursement rates with best practices." In terms of timing, Shipp stressed there is a window of opportunity for anyone interested in advancing quality measures to engage with congressional staff in the weeks following enactment of the budget bill, when staff begin looking for new projects. While it was unlikely that much would be done before the elections in November 2018, she encouraged the workshop audience to use that relatively quiet time to meet with staff and educate them on the issues that are important in quality measurement.
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One approach might be to use mobile device apps to collect data directly from patients that could be used for quality measurement, an idea that Mor supported to collect data on functional status. Duseja also noted that CMS's quality payment program represents a good example of trying to align accountability with both quality and cost measures.
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FUTURE USE OF QUALITY MEASURES FOR ACCREDITATION TO SUPPORT ACCOUNTABILITY FOR HIGH-QUALITY CARE Opening the fourth session, moderator Diane Meier, director of the Center to Advance Palliative Care, Gaisman Professor of Medical E thics, and vice chair for public policy and professor in the Department of eriatrics and Palliative Medicine at the Icahn School of Medicine at G Mount Sinai, noted that until now, the field of palliative care has grown without the benefit of support from existing regulatory or accreditation frameworks. Much of that growth, she highlighted, has been achieved thanks to very generous private-sector philanthropy, strong specialty membership organizations, and other groups.
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Henry explained that NCQA is concerned about the absence of good clinical quality measures outside of assessment. Although the Hospice Item Set has several assessment measures, given the individuality of patients with serious illness, it is difficult to get measures that work reasonably well.
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" asked Henry. Accreditation and Certification at The Joint Commission David Baker, executive vice president of the Division of Health Care Quality Evaluation at The Joint Commission, addressed the differences between accreditation and certification and their potential advantages and disadvantages.
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"Ideally, certification becomes a learning collaborative;" though he added "we are not there yet." A particular advantage of certification is that it helps to identify high performing organizations that can serve as benchmarks for other systems. The disadvantage is that this approach is disease specific, except for palliative care programs.
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Certification is voluntary and sometimes has financial incentives such as Anthem and Blue Shield of California's requirement that, if a program wants per-member, per-month payments for palliative care delivery, the program must be The Joint Commission certified. "The problem is that there is not standardization of that practice across the country," highlighted Meier.
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There is, however, experiential evidence, as there is with hospice, palliative care, and serious illness care, and that evidence needs to be used to develop existing accountability mechanisms and make them real for the people who are being cared for at home. "What they look like sitting on the chair in the clinic is not what you see around the kitchen table, and health decisions are made at the kitchen table every day in this country," she said.
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To address that "requires legislation, and working with legislation requires a different set of skills, money, and organized coalitions," said Meier. Meier also pointed out that the National Consensus Project for Quality Palliative Care25 first released guidelines in 2003, and has been through three editions with a fourth currently in process.
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"What would be nice is if these evidence-based, consensus guidelines were to be integrated into the measurement and accreditation process so that there are not different sets of measures and standards depending on who is paying you and who is accrediting you," asserted Meier. "If we can get to even the basics of what a palliative care team looks like and what all hospitals should provide at some decent level of quality -- not 100 percent perfection -- we would be so much further along than we are now." Workshop participant Lauren Cates noted that The Joint Commission pain standard now includes a requirement that hospitals provide non-pharmacological pain interventions, but when she mentions this to decision makers at hospitals, they are not responsive.
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It is only in those cities that are fully networked, Mor explained, that discharge planners know about specific nursing homes and home health agencies and their connection to specific providers. SUPPORTING CLINICAL COMMUNITIES FOR QUALITY AND ACCOUNTABILITY The Palliative Care Quality Network (PCQN)
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Referring back to Fields's presentation, Pantilat said several health plans in California now use PCQN data as part of their accountability strategy for the state's requirement under SB-1004 that palliative care be available to all Medicaid patients. In addition, PCQN is already being used for accountability as the Partnership Health Plan in Northern California
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66 FIGURE 10 Comparison PCQN pain report. NOTE: UC = University of California.
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. Luetke-Stahlman explained that Cerner has produced more than 45 different registries covering a variety of different conditions, and the H ealthe registry focuses on quality measures (Luetke-Stahlman, 2018)
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" Implementation of quality measures, asserted Saliba, is a staged activity that is harder than it looks and involves more than just collecting data. "Collecting data is not going to change outcomes, so we have to be prepared for how we are going to make change happen within an organization," said Saliba.
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When thinking about function, Saliba pointed out, instrumental activities of daily living, in addition to activities of daily living, can be just as informative because, for many people, the instrumental activities drive quality of life.26 Saliba noted that while outcome measures are important, they can paint an incomplete picture of whether care is appropriate. These should be seen as potential indicators or signals of care.
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Building on the theme of implementation, Carol Spence, an independent consultant and former vice president of research and quality at the National Hospice and Palliative Care Organization, shared the story of "a lived experience with a single measure." She summarized the plot of the story as provider ignores measure, provider meets measure, provider does not like measure at first but does so once it gets to know it a little better. In the end provider embraces measure.
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The National Hospice and Palliative Care Organization put this and other measures into place, along with instructions on how to implement the measures. Spence and her colleagues started a national-level data collection initiative populated by aggregate data from hospices, and the organization would produce reports with national comparative results for the hospices to use for quality improvement.
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Marian Grant, an independent policy consultant and practicing palliative care nurse, wondered why the relevant set of measures has to be incorporated into EHRs one institution at time rather than as an off-theshelf product. Luetke-Stahlman replied that her organization deals with
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For Lynn, hospice, palliative care, home health care agencies, nursing homes, and hospitals should all be measuring functional status, cognitive function, pain, and other measures in the same way. "There is a certain wisdom to standardization, even if you do not like that way of measuring as much as the one you customized," said Lynn.
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Likening the health care system to a pre-Copernican model of the solar system, with the physician at the center of the universe instead of the patient, Berman said the focus is on the needs and siloed data of medical societies, yet those with serious illness often do not have one disease, but multiple chronic conditions and multiple clinicians. "We have to look more broadly from a systems perspective," Berman commented, and stressed the need to untether the disease aspect from measurement and focus on the goals of care from the perspective of the individual and the sum of their conditions and social needs.
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Using an analogy of being told what speed a car is going an hour after passing a speed limit sign, he highlighted how unhelpful such a delayed process was and posited that if the expectation is for data to drive improvement, it must be available in real time because providers are constantly taking care of patients. For Morrison, the workshop presentations made him think back to a meeting nearly 20 years ago when researchers came together to try to address the issue of accountability for those with serious illness.
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In closing, Morrison commented, "it seems that hospitals, health systems, and others are accountable for the social determinants that are driving so much of the care quality." He wondered if that was the case, "shouldn't we be measuring and reimbursing for that kind of care? " In the same vein, he asked, "If measurement is so important, if we are asking our institutions and our clinicians to engage in this quality initiative, why aren't they getting paid to do it?
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doi: 10.1056/NEJMp1605101. CAPC (Center to Advance Palliative Care)
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Presented at Implementing Quality Measures for Accountability in Community-Based Care for People with Serious Illness: A Workshop, Washington, DC.
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. PCQN (Palliative Care Quality Network)
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