Patients Charting the Course Citizen Engagement and the Learning Health System: Workshop Summary (2011) / Chapter Skim
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4 Engaging Patients to Improve Science and Value in a Learning Health System
4 Engaging Patients to Improve Science and Value in a Learning Health System
Pages 95-118
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From page 95... ...
The papers in this chapter explore what is meant -- theoretically and practically -- by patient engagement in health care, and how health systems might better learn from patient participation to advance clinical science and healthcare delivery as well as better support patients in care and care management decision making. Strategies for improving public awareness of key opportunities for such engagement and for providing tools to enable greater participation also are discussed.
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From page 96... ...
James Conway of the Institute for Healthcare Improvement explores the potential for greater patient and public engagement to improve health system performance, noting the growing evidence base of how patient engagement could improve a wide array of health and system outcomes, from patient adherence, to clinical outcomes, to financial performance. He proposes a framework to better connect and align the interventions currently under way and encourage and support the development of effective public engagement initiatives.
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From page 97... ...
Collectively, however, these stakeholders value a system that focuses on prevention and wellness, proper diagnosis, and individualized care. An ideal system therefore requires an intelligent blend of savvy stewards and systems that advance the public's health on the one hand, and on the other, consumer-initiated and/or consumer-driven tools and resources that aggregate and analyze clinical and other health information over time to help enhance understanding of health and disease.
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From page 98... ...
The data can talk, and with appropriately balanced privacy and confidentiality protections, individuals and families can communicate to the health information exchange systems in their lives what it is that they value. In this ideal system, the system architecture, the privacy scheme, and the manner in which they assist consumers to cut through a mass of decisions to establish highly granular privacy settings without becoming overwhelmed will be simple (see the section below on consumer health information systems)
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From page 99... ...
It includes a comprehensive audit log and tracking, all consistent with emerging health information technology standards for the coming years. Trusted guides in this system help users establish privacy preferences, which can be difficult to navigate depending on the user's literacy level.
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From page 100... ...
To make this happen, we've created a platform for collecting and sharing real world, outcome-based patient data and are establishing data-sharing partnerships with doctors, pharmaceutical and medical device companies, research organizations, and non-profits."3 The site allows individuals to aggregate and share their information with one another, and also to choose to share clinical information with pharmaceutical companies. Some may argue that this does not constitute real learning for the biomedical enterprise because some data are selfreported, because individuals' quality of life is weighted heavily, or because individuals are too involved to maintain the objectivity traditionally sought in clinical research.
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From page 101... ...
The individuals who participate in 23andMe are not seeking a disease community perspective, but instead are interested in genotyping embedded in social networking technologies. 23andMe reports genotypes to individuals, aggregates the scientific literature on those SNPs, and presents representations of an individual's SNPs compared with interpretations in the current scientific literature and genealogic databases.
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From page 102... ...
In considering a learning health system, it is important to include public health. The newborn screening system, probably the nation's most successful public health program, is an excellent program in which the sharing of information could serve to engage the public in the healthcare system.
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From page 103... ...
The summary of the Learning Healthcare System workshop refers to both the need for a culture of shared responsibility that includes patients, providers, and researchers and the need for improved communication around the nature of public engagement (IOM, 2007)
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From page 104... ...
This paper briefly examines the current state of public engagement, including shortfalls, definitions, opportunities, and evidence; presents a framework for public engagement; and provides a focused charge for moving forward. Shortfalls in Public Engagement In the midst of exceptional care, caring, hope, and discovery, there is extraordinary suffering, harm, tragedy, waste, and inefficiency in the healthcare system (IOM, 1999, 2001)
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From page 105... ...
. Opportunities: One View of What Is Possible Decades of work demonstrate the powerful opportunities created by public engagement.
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From page 106... ...
New practices and improved outcomes associated with shared care planning were apparent. In the IHI Get Boards on Board initiative, part of the 5 Million Lives Campaign, key content has focused on encouraging governance and executive leadership to seek out opportunities to meet patients and families in several contexts: at the sharp end of error, through rounding, in ad hoc invitations to participate in improvement, in the community, or through patient and family advisory councils.
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From page 107... ...
Evidence of the Impact of Public Engagement For many, public engagement is seen as "nice but not necessary," "the soft stuff" -- "if only they did what they were told." Yet growing research reveals the impact patient engagement can have on health outcomes, patient adherence, process-of-care measures, clinical outcomes, business outcomes, patient loyalty, reduced malpractice risk, employee satisfaction, and financial performance -- including reduced lengths of stay, lower cost per case, decreased adverse events, higher employee retention rates, reduced operating costs, decreased malpractice claims, and increased market share (Charmel and Frampton, 2008; Edgman-Levitan and Shaller, 2003; Stewart et al., 2000)
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From page 108... ...
Moving Forward In a study of patient/public engagement in Europe, Groen and colleagues (2009) note, "The widespread implementation of policies to ensure patients' rights, privacy, and confidentiality is noteworthy.
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From page 109... ...
109 ENGAGING PATIENTS TO IMPROVE SCIENCE AND VALUE FIGURE 4-1 Public engagement level and dimensions: A rudimentary framework. Figure 4-1.eps bitmap FIGURE 4-2 Figure 4-1 with examples at each level.
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From page 110... ...
A high-quality decision on testing or treatment requires communication about the options and the potential good and bad outcomes, as well as consideration of patients' concerns, goals, expectations, and preferences for those outcomes. This paper highlights gaps in the quality of medical decisions made in the United States, describes interventions that have been shown to improve the quality of decisions, and reviews some promising approaches to putting these interventions into practice.
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From page 111... ...
. The key findings of the study raise questions about the quality of medical decisions and the amount of shared decision making in the United States today.
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From page 112... ...
Three main approaches have been used to promote shared decision making -- provider training, patient coaching and question checklists, and patient decision aids. Provider Training Provider training focuses on teaching communication skills and decision coaching skills (for example, risk communication)
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From page 113... ...
Three companies that have developed many of these tools are Healthwise, Inc., Health Dialog, Inc., and the Foundation for Informed Medical Decision Making. Researchers at Ottawa Health Research Institute, McMaster University, and the University of Wisconsin have also developed patient decision aids.
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From page 114... ...
In fact, the recent healthcare reform legislation calls for the development of quality measures, including those focused on decision quality, as well as for the development of certification for decision aids and other tools designed to promote shared decision making. Conclusion In summary, the data show much variability in the quality of medical decisions.
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From page 115... ...
2009. Can women with early-stage breast cancer make an informed decision for mastectomy?
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2007a. Do patient decision aids meet effectiveness criteria of the international patient decision aid stan dards collaboration?
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From page 117... ...
2008. Implementing breast cancer decision aids in com munity sites: Barriers and resources.
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