December 23, Dr. David Blumenthal National Coordinator for Health Information Technology Department of Health and Human Services

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1 December 23, 2010 Dr. David Blumenthal National Coordinator for Health Information Technology Department of Health and Human Services RE: Prioritized measurement concepts Dear Dr. Blumenthal: Thank you for the opportunity to comment on the measurement concepts prioritized by the HIT Policy Committee s Quality Measures Workgroup. An essential step towards achieving the National Quality Strategy s goals of improved health of the population, better experiences of care for patients and their families, and slowing of cost growth is the ability to measure the dimensions of quality contributing most significantly to these outcomes. It is critical that the federal government invest in the systematic, transparent development of measures that fill certain gap areas with the most potential for advancing patient outcomes and value. This means prioritizing development of new kinds of measures that enable us to assess the patientcentered dimensions of quality supported by the meaningful use of health information technology (IT) and advanced by the new models of care delivery and payment created by the Affordable Care Act (ACA). The system of quality measurement toward which we are moving must be far more cohesive, comprehensive, and nimble than the current quality enterprise. If we are indeed moving toward the learning health care system called for by the Institute of Medicine (IOM) and which is enabled by an electronic environment measures should be designed not just to indicate quality as a snapshot in time, but also to show longitudinal change and to evolve rapidly as the learning health care system brings about advancements in the evidence base. This will require collaboration and alignment of private and public sector efforts, application of measures across specialties, and an emphasis on the role of primary care. The federal government has already funded significant work in this area under contract with the National Quality Forum (NQF). The Quality Data Set and proposed Measure Authoring Tool, which is scheduled for completion in mid-2011, represent key elements of this new infrastructure for quality measurement. Additionally, a core set of children s healthcare quality measures are being developed pursuant to CHIPRA. The Office of the National Coordinator s (ONC s) efforts to prioritize measure concepts and measure development should be very closely coordinated with these existing federally funded efforts in order to ensure that public money is used most efficiently to advance the National Quality Strategy. Below we offer a new approach for determining priorities and where to invest in measure development and use, as well as our recommendations for measure concepts to advance according to this approach. These recommendations represent the most opportunity for rapidly

2 advancing our ability to evaluate dimensions of quality that will have the most impact on actual improvement in care, patient experience, and cost reduction. The Longitudinal, Shared Care Plan: A Patient-Centered Approach for Prioritizing Measure Development Nearly half of the measure concepts prioritized by the Quality Measures Workgroup could be addressed by implementing a standardized, longitudinal, shared care plan, from which key quality metrics could be developed. A longitudinal shared care plan is a tool for organizing, storing and sharing vital health information which enables the information contained in it to be accessed, downloaded, and used by members of an individual s care team to coordinate care. The concept of the shared care plan includes individuals and their families as members of the care team, which broadens its application to be a tool for self-management and health improvement, whether the individual is healthy or has multiple chronic illnesses. This broad application also means that the shared care plan is a tool applicable to all providers and all care settings. Ideally, a longitudinal shared care plan should enable goal setting, action planning, and tracking of progress for each member of the care team. Longitudinal, shared care plans are not possible in a paper environment, making this one of the most critical applications of health IT implementation. In fact, achieving the goals of health reform and meaningful use of health IT is simply impossible without moving toward this approach for providing care. Some institutions are working to implement this concept in various ways, but the concept of a longitudinal shared care plan is not widely operationalized. Making this shift in health IT supported care delivery requires: Development of a standardized format and content for longitudinal shared care plans; Development and implementation of a set of quality metrics that indicate the use and effectiveness of implementation of an individual s shared care plan; and Development of a privacy protective standard methodology for identifying patients across time and providers. Additional measures, many of which either already exist or are in various stages of development, would be necessary to complement the evaluation of the process measures related to the longitudinal, shared care plan with related outcomes tied directly to the goals of health reform. Specifically, experience of care, measures of decision quality, patient outcome measures, health equity measures, and efficiency are the broad outcome areas critical for evaluating quality and value in the health care system of the future. Future payment models will require drawing from the above priority concepts in ways that evaluate patient outcomes, clinical outcomes, and resource utilization in concert to determine appropriateness and value. The measure concepts prioritized by the Quality Measures Workgroup offer a number of opportunities to advance critical elements of the longitudinal shared care plan through the immediate opportunities of Stages II and III of Meaningful Use. Below are our recommendations for measure concepts to advance as part of meaningful use, accompanied by explanation of their importance to patient centered care and the direct link to the approach outlined above. 2

3 Patient and Family Engagement Of the measure domains prioritized by the Quality Measures Workgroup, the Patient and Family Engagement domain is the one most critical to advance rapidly. There is widespread agreement that the goals of reform cannot be met without more thorough engagement of patients and their families in their health and health care. This notion is reflected in the inclusion of patient and family engagement as one of five policy priorities for the meaningful use of health IT. Yet there are very few measures available today that reflect the degree to which patients and families have been involved in their care. Patient Self-Management and Activation All outcomes are influenced significantly by the ability of patients to manage their care at home and the actions they take to do so. Providers can play a critical role in providing the support, education and skills patients and their families need to be successful in managing their care outside of encounters with the health care system. Additionally, most patients and their caregivers want to be more engaged in the management of their care, but lack the information and support they need to feel successful. Addressing patient activation and selfmanagement is not only necessary for achieving the goal of improving clinical care, but also for achieving improved patient experience, as the more empowered patients and families feel, the more positive their experiences are likely to be. For these reasons, the evolution of measurement toward an emphasis on better outcomes of care and patient experience requires the advancement of measures that assess self-management and activation of patients. There is an existing measure of patient activation developed by Judy Hibbard, which could be made ready for broad implementation with relatively little investment. This assessment could be built into an EHR for collection on every patient, and would be a step toward collecting key information necessary for implementing a longitudinal shared care plan. Shared Decision-Making Shared decision-making is ultimately one of the primary goals of patient engagement through better use and communication of information. Currently, measurement is still advancing in this area, and significant work has been done to develop measures of decision quality that are specific to particular procedures or treatments. We advocate prioritizing advancement in this area, which would also have implications for reducing the burden of disease (including the burden of treatment), and most likely would have implications for slowing cost growth, given evidence that when patients are presented with complete and unbiased information they often choose less invasive (and less expensive) treatments. Current shared decision-making measures developed by the Foundation for Informed Medical Decision Making tend to be condition/procedure-focused, and therefore represent a tremendous opportunity to engage specialists in meaningful use. Investments should be made in developing more broadly applicable measures of shared decision-making and decision quality. Shared decision-making and measures of decision quality are definitional to longitudinal, shared care plans, and therefore investment in this area would fill a significant gap in being able to encourage and ultimately measure the critical processes involved in care planning and implementation. Patient Experience of Care Assessing patient experience of care is one of the clearest measures of patient engagement, and is included in the three main goals of the National Quality Strategy, making this area a significant priority for federal investment. Research shows that improving patients experience of 3

4 care which goes well beyond patient satisfaction leads to direct improvements in outcomes. Fortunately, this is currently one of the most advanced areas of measurement related to patient and family engagement. Existing surveys and other validated instruments assess critical components of experience of care. Survey instruments assessing patient experience of care are available for both inpatient and outpatient hospital settings, clinician and group-based ambulatory care settings, health care facilities, and health plans, and a health IT-specific module is in the final stages of testing. There are also a number of qualitative strategies for gathering patient and caregiver experience data, such as those included in the latest proposed National Committee for Quality Assurance (NCQA) patient-centered medical home qualification criteria. What is needed to support the advancement of this measurement concept is to reduce the barriers to collecting patient experience information, so that surveys can be distributed more broadly in order to evaluate experience of care for targeted populations. Many barriers can be overcome by distributing surveys using electronic methods. Methodologies need to be developed to ensure that electronic modes of data collection are reliable and valid. Additionally, continued evolution of the surveys is required to ensure that we are able to evaluate all the most salient components of patient experience. One priority area for future development is to enhance the ability of these surveys to assess the effectiveness of care transitions, which would promote parsimony of measurement by addressing patient experience and care coordination with one measure. Future iterations of this survey should also seek feedback from patients and their families about the degree to which they were involved in the care planning process, the availability of key information, resources and supports necessary for them to take action according to their care plan, and the degree to which their preferences were honored in the process. Continued evolution and advancement of patient experience of care surveys will offer a critical complement to process measures collected automatically as a result of future use of standardized, electronic, longitudinal, shared care plans. Patient Outcomes Advancing measurement in the area of patient health outcomes is a key component of advancing patient-centered care and achieving greater patient engagement, since traditional clinical quality measures reflect only provider compliance with clinical guidelines. These measures do not reflect the needs and preferences of individual patients, and do not reflect individual health goals, which are critical for deeper patient engagement. Additionally, reduction of the burden of disease should focus not just on populations of people, but also on the individual burden of illness, which can often be a barrier to more active engagement on the part of patients and their families. Patient health outcomes that focus on different aspects of patient functional status, overall well-being, and quality of life are indicators of the overall burden of illness on individual patients and their families. Tracking improvement in these outcomes over time would provide opportunity for engagement of patients in critical conversations about how to reduce their individual burden of illness through improving outcomes conversations which often do not occur in our current system of care. It would also achieve greater consumer engagement in the use of quality metrics by providing quality information more relevant to their concerns. As we move away from a sick-care system and toward a health care system that puts greater emphasis on prevention and population health, it will be vital to be able to measure the reduction of health risk as a patient outcome. Particularly, investments should be made in 4

5 developing measures that evaluate major health risks, such as high blood pressure or lack of physical activity, which are amenable to change, and which should be included in a longitudinal, shared care plan. Calculation of avoidable risk of death 1 (or other, more patient-centered outcomes, such as functional status and quality of life) over a specific period of time, would provide extremely useful information to patients and their clinicians, as well as to health systems and payers, in determining health goals and making progress toward meeting them. Measure development in the area of patient-outcomes is ripe for development, as there is sound work upon which future efforts can be built immediately. 2 Measures and accompanying specifications should be developed so that existing tools can be used to collect this information in ways that allow for comparisons across providers and provider settings, as well as comparison across time to determine improvement. Care Coordination Care coordination is one of the primary pain points for consumers in their interactions with the health care system. Often the lack of care coordination leads not only to a negative care experience, but to significant harm and waste. For these reasons, an emphasis on care coordination is central to most of the health care delivery system reforms included in ACA, and our ability to evaluate these new models of care will depend on having robust measures of effective care coordination across all health care providers and settings. One of the greatest benefits of electronic health information exchange is the ability to share information necessary for coordinating care effectively, yet our ability to measure the use of information to coordinate care is significantly limited. We must ensure that quality measurement captures the meaningful use of new technologies to coordinate care, as all stakeholders prepare for new models of care delivery and payment. Investments should be made to develop a standard operational construct for care coordination in order to facilitate a cohesive approach to measurement in this area. There are a number of ways to achieve parsimony by advancing measurement in the area of care coordination, as well, given the close ties to the domains of clinical appropriateness, patient and family engagement, and patient safety. The patient and his or her family are the only constants in the care delivery process, making the evaluation of care coordination incomplete without a patient experience of care component. Using health IT to collect experience of care information from all patients using existing survey instruments should be a top priority for advancing measures currently available. Investments should be made in this domain to advance the ability of current experience of care surveys to evaluate patient and family experience of care coordination during care transitions. Experience of care surveys should also evolve to include questions that assess adherence to a shared care plan, including questions related to community linkages, self-management support, and decision support. These elements will be critical components of being able to evaluate quality of care using the approach described above. 1 Dartmouth Institute, Institute for Health Metrics and Evaluation measure of health risk survey 2 Dr. John Wasson of Dartmouth Medical School has developed a web-based survey, the How s Your Health survey, which asks questions about a consumer s overall health, symptoms, medications, diet, tests, emotional issues, and health behaviors. 5

6 Clinical Appropriateness Achieving the three goals of reform (better care, healthy people and communities, and slowing of cost growth) requires the ability to evaluate value from multiple perspectives. Appropriate and efficient use of health care resources as indicated by readmission rates and preventable emergency department visit rates should be the priority area for investment in addressing cost growth. Measures are currently in development in these areas and could be advanced quickly with appropriate investment. Another area of investment should be an emphasis on strengthening the role of primary care in supporting the three goals of reform by developing a measure of ambulatory care sensitive preventable admissions. This measure would accelerate coordination between primary care providers, community resources, and hospitals, and would support movement toward a system based more in primary care, rather than specialty care. Such a measure would also help policy makers on both the national and local levels know about potential access issues, given that high rates on this measure could indicate a primary care shortage. Development and enhancement of evidence-based measures that address quality of care for patients with chronic conditions should be a second priority under this domain. Ninety percent of Americans over the age of 65 have at least one chronic condition, and nearly seventy-seven percent have multiple chronic conditions. These statistics represent enormous cost to our health care system, as people with chronic conditions account for 85 percent of health care spending. Improving care for these highly vulnerable patients, particularly those with multiple chronic conditions, is critical for achieving the goals of reform, and the use of health IT to coordinate care, prompt providers according to evidence-based guidelines, and make linkages necessary for the success of the care plan are central components of improvement in these populations. We urge the Department of Health and Human Services (HHS) to make immediate investments in the research and development necessary to measure and improve care for patients with multiple chronic illnesses. Improving quality for these patients is not just an imperative for better outcomes, but also for affordable care across the entire health care system. Population and Public Health The measure domain of Population and Public Health is a critical area of development due to its centrality to the goals outlined in the National Quality Strategy proposed by HHS. An absolutely essential part of improving the health of populations and using health IT in meaningful ways is in using information to reduce disparities in care. This can be done in two ways: adopting standard methodologies for collecting granular data regarding patient race, ethnicity, primary language, gender, and disability status and creating a composite measure that indicates the degree to which health outcomes vary among underserved populations when compared to those in majority populations. We urge ONC to invest in developing and adopting both standard methodologies for collecting this detailed information, as well as measures that indicate the degree of health equity demonstrated by providers. Patient Safety 6

7 There is well-documented harm caused by our current health care system. This harm results from a number of factors, including lack of communication of information and care coordination the issues most commonly cited by consumers as being problematic in their health care experiences. This harm also represents tremendous waste, as limited resources are used for inappropriate or unsafe care, as well as the care required to address the harm that so often results. Health IT, when used meaningfully and effectively, can help address these safety issues early in the process of care, before they become issues. Investments in measurement of patient safety should focus on advancing process and outcome improvement related to hospital associated infections, an area of high opportunity in which there are existing measures that can be employed today. Additionally, developing new measures of adverse drug event reporting by both providers and patients will be critical for ensuring the use of health IT to achieve maximum improvement in safety and quality. Other Measure Concepts Of the additional measure concepts prioritized by the Quality Measurement Workgroup, the one in which we find the most value is the idea to create measures of common electronic health record (EHR)-related errors. While health IT, EHRs, specifically, hold great promise for improving the quality of care in the US, they are also devices which may or may not be designed or perform as expected. It is of critical importance to have a way to measure and evaluate the level of harm caused by health IT systems which may not function appropriately, so that products can be perfected and policy-makers can have the information they need to know the best options for ensuring the patient safety. All measure concepts in each of the domains prioritized by the Quality Measures Workgroup of the HIT Policy Committee are critically important, and must be advanced. Yet we understand that moving forward requires further prioritization of our collective efforts and investments. Thank you for the opportunity to share our recommendations for a first tier of measure prioritization that will move us quickly toward a more robust system of patient-centered measurement. Approaching these measure investments from the perspective of a longitudinal, shared care plan and additional measures that will complement it will result in a strong foundation for being able to measure and improve care in a reformed health care system. Sincerely, Members of the Consumer Partnership for ehealth and the Campaign for Better Care Advocacy for Patients with Chronic Illness, Inc. American Hospice Foundation Center for Advancing Health The Children s Partnership Community Catalyst Consumers for Affordable Health Care Consumer Health Coalition Consumers Union National Alliance for Caregiving National Council of Jewish Women 7

8 National Family Caregivers Association National Health Law Program National Partnership for Women & Families National Women s Health Network North Carolina Justice Center Society for Participatory Medicine The Empowered Patient Coalition UHCAN Ohio Well Spouse Association 8