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10 Common Themes and Opportunities for Action INTRODUCTION As noted in Chapter 1, the discussions summarized here had broad ob- jectives: to review the state of play with respect to the foundational elements of a learning health system; to explore the hallmarks of patient engagement for care that must keep science, patients, and value in focus; and to discuss strategies important for improving the awareness and patient-focused ac- tion necessary for the transition to a learning health system. With a scope this broad, the discussions spanned many issues, but certain elements served as frequent reference points throughout the discus- sions. This chapter provides a review of those common themes, and also summarizes a session entitled Strategies and Priorities in which panelists were asked to reflect on what they heard about compelling policy issues moving forward. Emerging from workshop discussion is the notion that a learning health system should focus on patients and their family, caregivers, or agents; should default to openness; should listen to the patient’s voice; and should promote respect, transparency, and patient feedback. COMMON THEMES Common themes that emerged during the course of the 2 days of dis- cussion (see Box 10-1) are summarized below. Listening. Each patient–clinician interaction starts with uninterrupted atten- 235

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236 PATIENTS CHARTING THE COURSE BOX 10-1 Patient-Anchored Care: Common Themes • istening. Each patient-clinician interaction starts with uninterrupted attention L to the patient’s voice on issues, perspectives, goals, and preferences. • articipatory. Health outcomes improve when patients are engaged in their P own care. • eliable. All patients should expect proven best practice as the starting point R in their care. • ersonalized. With proven best practice as the starting point, science-based P tailoring is informed by personal biological traits, circumstances, and preferences. • eamless. Care delivered by multiple providers in multiple settings should be S fully integrated and seamless. • fficient. Patients, their families, and clinicians should expect care to be ap- E propriate to the need, available resources, and time required. • ccountable. All relevant aspects of the clinical experience, including patient A perspectives, should be captured and routinely assessed against expectations. • ransparent. Information on the outcomes of care—both effectiveness and T efficiency—should be readily accessible and understandable to patients and their families. • rustworthy. Patients should expect a strong and secure foundation of trust on T all dimensions—safety, quality, security, efficiency, accountability, and equity. • earning. In a learning health system, the patient is an active contributor to L and supporter of the learning process. tion to the patient’s voice on issues, perspectives, goals, and preferences. These patient views should then be used to guide clinical decisions, which often involve choices among multiple treatments that have both benefits and risks. Workshop participants reported that care often improved when staff and providers listened carefully to the concerns of patients and their families. Yet, it has been noted that physicians tend to interrupt patients within about 15 seconds of beginning to speak at the outset of the visit. On the other hand, an uninterrupted patient tends to conclude their remarks in under a minute (Beckman and Frankel, 1984). Listening fully to the patient, then, does not cause any significant delays in the physician’s schedule, and adds substantially to creating an environment where patients feel comfort- able sharing their health information. Achieving this goal will require a new focus on patient communication starting early in provider education to ensure that providers have the tools they need to share complex health information with patients and help them with these decisions. Participatory. Health outcomes improve when patients are engaged in their own care. In addition to improving health outcomes and patient adherence,

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237 COMMON THEMES AND OPPORTUNITIES FOR ACTION participants noted that engagement can increase employee satisfaction and financial performance. People are eager to play a strong role in their own health care when given the right tools, as evidenced by the rapid uptake of Web 2.0 health information applications. Yet as one speaker mentioned, surveys indicate that only half of patients receive clear information on the benefits and trade-offs of the treatments under consideration for their condition. Patients’ involvement may be increased by providing them with additional information tools for learning about their health, helping them see the impact of their efforts, and acquainting them with new technologies with which to monitor their health and assist with lifestyle changes. Public participation is not limited to the clinic; the workshop highlighted new initiatives to provide access to health data and allow individuals to create new applications to improve their health. Reliable. Each patient should expect proven best practice as the starting point in their care. The current variability in medical practice impacts patient care and results in uneven quality and safety for patients. Par- ticipants described tools that minimize this variation, such as dashboard displays that highlight the interventions that are due, done, or overdue and improve the consistency of the delivery of interventions to patients; other technologies that show promise include clinical decision support systems that present best practices to clinicians. Several participants also noted that, while technologies provide new opportunities, incentives, such as bundled payments and pay for performance, are needed to promote reliability and effectiveness in healthcare organizations and ensure accountability. Personalized. With proven best practices as the starting point, science-based tailoring is shaped by personal biological traits, genetics, circumstances, and preferences. Since the sequencing of the human genome was accom- plished, medical science has sought to personalize treatments to specific biological traits and genetics, in addition to personalizing care based on individual patient circumstances and preferences. This effort challenges the traditional approach of giving the highest priority to evidence gathered by means of large randomized controlled clinical trials, in which treatments are measured in a large population with a diverse genetic profile. Using multiple types of complementary evidence could better guide medical deci- sions and account for these personal factors. This new approach focuses on the applicability of results to the clinic, rather than automatically giving priority to the results of randomized controlled trials. Seamless. Care delivered by multiple providers in multiple settings should be nonetheless expected to be fully integrated and seamless. As patients move among providers and settings, they often encounter communication

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238 PATIENTS CHARTING THE COURSE problems, which may result in treatment errors and duplicative services. Participants described how team-based care offers the potential to rectify this disconnected care and limit human error. Effective teams are aided by an appropriate information technology infrastructure, which facilitates efficient and effective communication of health information. Encouraging the use of such teams will likely require the use of financial incentives, in- cluding bundled payments and payments that focus on outcomes; applying disincentives for poor outcomes, such as for preventable hospital readmis- sions; and creating incentives for delivery system reforms, including medical homes and accountable care organizations. Efficient. Patients, their families, and clinicians should expect care to be appropriate to need, resources, and time required. Participants underscored the fact that currently, much of the care that is delivered is neither necessary nor efficient, with patients facing increasing out-of-pocket costs and lost time in the care process. This finding is not surprising given that the cur- rent incentive structure, focused on volume over value, encourages overuse and waste. As multiple participants noted, the United States spent roughly 17 percent of its gross domestic product on health care last year, yet this investment does not yield the health outcomes commensurate with the costs. To gain greater value, many participants stressed that the costs and outcomes of care should be more transparent to patients, and new payment models—ranging from bundling payments for an entire episode of care, to pay-for-performance systems, to global payment—need to be implemented. Accountable. All relevant aspects of the clinical experience, including patient perspectives, should be captured and routinely assessed against expectations. This information is vital not only to achieving effective pa- tient management, but also to judging whether experiments with new de- livery system models, payment incentives, or standards of care are having their intended effect on improving patient health and promoting efficiency. Measuring performance and disseminating innovations that work (and eliminating those that do not) constitute a systematic way of improving healthcare delivery. One presentation highlighted how this systematic ap- proach to improvement allowed the speaker’s organization to enhance care by conducting comprehensive reviews of interventions for different condi- tions, adopting the best practices identified by that review, and measuring the performance of the revised standard of care. Transparent. Information on the outcomes of care—both effectiveness and efficiency—should be readily accessible and understandable to patients and their families. Several speakers mentioned the frustration felt by patients regarding the lack of understandable information on the costs,

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239 COMMON THEMES AND OPPORTUNITIES FOR ACTION quality, and outcomes of care, especially in light of reports about medical errors and the increasing personal burden of costs and inefficiencies of care. It was noted that, when offered a choice, patients do not routinely choose more costly or more intensive interventions. However, patients rarely have choice or information about alternatives. It is clear that information needed to improve value—better outcomes at lower cost—requires transparent information on the costs and outcomes of care. Trustworthy. Patients should expect a strong and secure trust fabric on all dimensions—safety, quality, security, efficiency, accountability, and equity. In few areas of human endeavor is trust on each of these dimensions more important. Yet one presenter noted that, even though 50,000 to 90,000 deaths per year are caused by medical errors, health care lacks the basic trust elements of transparency and accountability needed to drive improve- ments in quality and safety. In a learning system that draws lessons from each care experience, public trust must be bolstered in all aspects of the healthcare enterprise: equitable access to reliable clinician knowledge and skills, safeguards on clinical processes, the privacy and security of medical records, and the validity and safety of clinical trials. Learning. In a learning health system, the patient is an active contributor to, and supporter of, the learning process. Each patient experience offers the potential to deepen the knowledge base that drives care quality and outcomes—at the individual, practice, and societal levels. A focus of the workshop was the stake of the patient in fostering a digital health utility that provides needed information to patients and their clinicians, ensures synchronization among providers, and generates knowledge for progress— for example, for comparative effectiveness insights, public health activities, or postmarket monitoring of approved technologies and drugs. Refer- ence was made, for example, to the need for a common core data set for electronic health record–based data that would allow reliable, platform- independent research across large patient populations. These are issues in which patients have a strong stake, and they must have confidence in the system’s functionality for the generation of timely and reliable new insights. STRATEGIES FOR MOVING FORWARD Throughout this workshop, participants reflected on the state of play of health care today; identified the opportunities and impediments for trans- forming health care into a continuously evolving, learning health system; considered the needs of different stakeholders—patients, family members, the public, physicians, healthcare teams, or leaders; and addressed the im- pediments for achieving this vision.

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240 PATIENTS CHARTING THE COURSE The Need to Engage Patients and the Public Developing active learning skills, rejecting patronizing attitudes to patients and inviting patients to the table on all matters pertinent to health and health care were often raised in discussions as crucial in moving ahead. Early in the workshop, participants made clear their priority for re- engineering the healthcare system around the needs of patients. Frequently suggested strategies for patient engagement included: involving patients as partners in the design of research, inviting patients to technology assess- ment and coverage-decision making meetings, stimulating dialogue between patients and industry, asking patients about their opinions of the health system, fostering shared decision making, and sharing information in the most transparent way. Focus on Learning The Roundtable vision of a learning health system was frequently ref- erenced by participants. Speakers envisioned a system in which advancing science and clinical research would be natural, seamless, and a real-time byproduct of each individual’s care experience; highlighted the need for a clinical data trust that fully, accurately, and seamlessly captures health expe- rience and improves society’s knowledge resource; recognized the dynamic nature of clinical evidence; noted that standards should be tailored to the data sources and circumstances of the individual to whom they are applied; and articulated the need to develop a supporting research infrastructure. Often noted was the imperative to make sure that learning encompasses all groups. Particularly striking was the repeated emphasis on learning for patients, learning for clinicians and clinician teams, and learning for organi- zations. Learning must be customized for each group. Patient learning must be tailored depending on health problems, literacy levels, and interest in self- management in order to affect patient behavior, maximize clinical adherence, and improve health outcomes. Similarly, presenters highlighted that clinicians learn differently depending on their career stage. Medical students might be blank slates for learning teamwork, electronic health systems, and collabo- ration, while experienced clinicians may need to have materials adjusted to their practice patterns. Finally, organizations vary in their ability to adjust, with some organizations having substantial resources to devote to innovation while others try to cope with their current practice load. Public Communications Vital to Success One of the key challenges identified in the workshop was the need for better communication strategies. Information about science and medi-

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241 COMMON THEMES AND OPPORTUNITIES FOR ACTION cal care often is presented in an oversimplified format where risks and uncertainty are not discussed. This is compounded by media strategies that dramatize health information or are shaped by groups that shape messages based on their own self-interest. As noted by Fran Visco of the National Breast Cancer Coalition, messages that are over-simplified or under-interpreted can lead to public controversies instead of rational discus- sions about evidence, as occurred during the update of the U.S. Preventive Services Task Force recommendations on breast cancer screening. Health communications could be improved by learning from other sectors with expertise in public communications, ranging from the media to advertising to new media firms. These organizations have conducted substantial research into the efficacy of different communications strategies and whether they influence public behavior. Building on this expertise, more research is needed on how science and medical evidence are absorbed by the public and the impact of different messaging methods. These initiatives also should take advantage of new media technolo- gies. One example discussed was Text4baby, a service for pregnant women. Provided to any woman who enrolls, it provides weekly health messages targeted to a woman’s due date and the first year of a baby’s life via text message. The service is a partnership where cellphone companies have agreed to pay for costs of the text messages. Early anecdotal reports suggest positive reactions from the participants. Although these targeted campaigns produce successes, further improve- ments require a stronger investment in widespread health literacy. Health literacy has a stronger impact on a patient’s health than age, income, race, or other factors (Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, 1999). A key opportunity for teaching health concepts is the primary and secondary educational system, where children could be taught concepts such as risk, evidence uncertainty, and disease prevention along with the skills to analyze health information. Public understanding of health issues is heavily influenced by news media reporting. Current health reporting entails covering complex finan- cial, public policy, and scientific issues, ranging from health insurance structures to clinical trial results to legislative proposals. Journalists must cover this broad range of complex issues and make them accessible and un- derstandable while ensuring the stories remain accurate and comprehensive. Achieving these aims requires increased education of journalists that cover health issues to assist them in their work. However, as noted by presenters, traditional media channels are not the only venue for delivering information to patients, and patients and consumers now receive most of their medi- cal and health information from the Internet. The volume of knowledge available will increase in the future because of open access journals, public access policies, and collaborative web forums.

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242 PATIENTS CHARTING THE COURSE LOOKING AHEAD TO NEXT STEPS The IOM Roundtable on Value & Science-Driven Health Care provides a trusted venue for sustained discussion and collaboration between national experts and health system stakeholders on issues important to improving the generation and application of evidence in healthcare decisions. It has advanced these discussions through five Innovation Collaboratives on clinical effectiveness research, electronic health records, best practices, evidence com- munications, and value incentives. With the passage of the Affordable Care Act, the Roundtable has new opportunities to engage in those five areas and promote the creation of a learning health system. The meeting’s discussions identified a number of promising suggestions for continuing the Roundtable’s work to achieve a learning health system, with the following issues deserving further attention and action by the members of the Roundtable. Clinical Effectiveness Research • How do various research methodologies produce results that con- tribute to personalized treatments, real-time learning, and clinical relevance? Should the Roundtable and its Clinical Effectiveness Research Innovation Collaborative develop a new taxonomy of research approaches that advance these goals? • What steps can encourage greater patient involvement in the evi- dence process, from fostering participation in clinical trials, to initiating data collection for disease research, and developing ap- plications from existing data? Evidence Communication • How can the Roundtable and its Evidence Communications Inno- vation Collaborative encourage the development of best practices in health communications, whereby complex information is deliv- ered in simple and easy-to-understand formats? What steps can be taken to compile information on successful concepts, such as patient coaching, question checklists, and patient decision aids? • What steps can be taken to encourage the education system to teach students how to analyze health information as well as related concepts, such as how to gauge risks and benefits, in order to pro- mote broader health literacy? • How can the Roundtable connect leaders from enterprises with expertise in consumer communications, such as media outlets and advertising, with health system leaders to transfer the lessons they have learned?

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243 COMMON THEMES AND OPPORTUNITIES FOR ACTION • Given that the media are a key supplier of health information, what steps can be taken to enhance the health literacy of journalists so as to improve the information delivered to the public? • With more Americans obtaining health information from the Internet, how can the Roundtable encourage the development of websites with authoritative medical information for consumers? Best Practices • Given the benefits of engaging patients and families in their medical care, how might patient-centered care be encouraged throughout the medical system? • What steps can the Roundtable and its Best Practices Innovation Collaborative take to encourage the use of technologies, such as dashboard displays or procedure checklists, that reduce variability in care management and improve the reliability of the use of best practices? • What impediments prevent patient preferences and goals from being considered in all care decisions? • Given the advantages of team-based care in promoting coordinated care and quality improvement, how can a team approach to care delivery be encouraged? Electronic Health Records • Developing a learning health system will require the use of clini- cal data as a reliable source for clinical research. How might the Roundtable and its Electronic Health Record Innovation Collab- orative encourage the development of standards and approaches to assure the quality of these data? • Since an effective health information utility was identified as a prerequisite for care coordination, continuous learning, and mea- surement of outcomes, what steps could Roundtable members and its Electronic Health Record Innovation Collaborative take to ac- celerate the adoption and use of such a utility? • Given the accelerated development of medical evidence, what might the Roundtable do to explore expanded decision support at the point of care? Value • With the creation of new reimbursement incentives to promote value, how might the Roundtable and its Value Incentives Learn-

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244 PATIENTS CHARTING THE COURSE ing Collaborative develop a framework for ongoing assessment of the efficacy of these reimbursement experiments with respect to increasing value? • What specific actions could be taken to reduce healthcare costs and increase value? What incentives are needed to encourage those actions? • What incentives, financial or otherwise, are needed to encourage providers to place greater emphasis on engaging patients in their care? As these issues are considered, it is important to note that the focus of the workshop was ultimately for and about the patient. Addressing these specific issues will help to move the health system toward one that provides the right care to the right person at the right time and for the right price. There is an opportunity to reach this ideal, but it will take commitment from all stakeholders, leadership, and diligence to reach a health system where patients are able to chart their own course. REFERENCE Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, A.M.A., 1999. Health literacy. Journal of the American Medical Association 281(6):552-557.