5
The Promise of Information Technology

INTRODUCTION

The Internet and other electronic information technologies have brought dramatic change to numerous sectors of the U.S. economy, including health care. Providers and patients now have a wealth of information literally at their fingertips. Discussed in this chapter is the work of two organizations that have developed information technology (IT) systems that help patients and providers find the information that is most relevant and actionable.

Rob Hayward, of the Centre for Health Evidence (CHE), notes that information overload makes it difficult for healthcare providers to easily integrate evidence into practice. For example, information sources such as journals each have their own way of organizing and presenting information, which is not easily adapted to clinical practice. Over the last decade, after working with many organizations and professional groups, CHE has developed a number of insights into technology that can serve as a conduit that links better information with better health outcomes. Key considerations include how to support information with convenience, and capacities for discrimination and integration into practice.

The changing healthcare information environment of consumers who are increasingly managing their own health care and health information is discussed by Peter M. Neupert, of Microsoft Health Solutions Group. Just as widespread access to the Internet has encouraged a more consumer-driven approach in industries such as banking, retail, and travel, consumers are being asked to take a more active role in their own health care. Consumers’ vested interest in improving health outcomes will likely lead to a



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5 The Promise of Information Technology INTRODUCTION The Internet and other electronic information technologies have brought dramatic change to numerous sectors of the U.S. economy, including health care. Providers and patients now have a wealth of information literally at their fingertips. Discussed in this chapter is the work of two organizations that have developed information technology (IT) systems that help patients and providers find the information that is most relevant and actionable. Rob Hayward, of the Centre for Health Evidence (CHE), notes that information overload makes it difficult for healthcare providers to easily integrate evidence into practice. For example, information sources such as journals each have their own way of organizing and presenting information, which is not easily adapted to clinical practice. Over the last decade, after working with many organizations and professional groups, CHE has devel- oped a number of insights into technology that can serve as a conduit that links better information with better health outcomes. Key considerations include how to support information with convenience, and capacities for discrimination and integration into practice. The changing healthcare information environment of consumers who are increasingly managing their own health care and health information is discussed by Peter M. Neupert, of Microsoft Health Solutions Group. Just as widespread access to the Internet has encouraged a more consumer- driven approach in industries such as banking, retail, and travel, consumers are being asked to take a more active role in their own health care. Con- sumers’ vested interest in improving health outcomes will likely lead to a 0

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0 EVIDENCE-BASED MEDICINE growing role as a disruptive agent of change in health care—by demanding better information and tools to support their health decisions. INFORMATION TECHNOLOGY TOOLS TO SUPPORT BEST PRACTICES IN HEALTH CARE Robert Hayward, Centre for Health Evidence A health informatics agenda is emerging that is preoccupied with evi- dence. After years of underinvestment in information systems, large-scale health infostructure initiatives have emerged in Western economies. Na- tional health reform plans in the United States, Canada, and Britain place evidence-based information systems among the top deliverables for this decade. Indeed, current policy ties this to an electronic health record for all Americans. Evidence-based medicine (EBM)? Policy makers have pro- claimed that it can be beamed to the bedside. The proponents of health informatics are quick to enthuse. Harnessing IT will improve health services because, of course, “better information begets better health.” Yet how can better information yield better health? At least three things must happen. First, healthcare decision makers must discern better from worse information. Second, changes in knowledge must trigger changes in health practices. Finally, improved outcomes must result from altered practices. In short, better information begets better health through the medium of better choice. If the starting point for better choices is better evidence, then the chal- lenge of EBM boils down to at least three requirements. Evidence-based decision makers must be supported to do the following: 1. Know what to do—because best evidence about best practices in- forms decision making. 2. Do what is known—because they recognize problems, formulate questions, select resources, and apply knowledge appropriately. 3. Understand what is done—because health choices and outcomes are iteratively validated. If, on the other hand, the starting point is the messy informational milieu of front-line clinicians, then even the most meritorious evidence is useless unless practitioners are supported with • Convenience—because all the right information is available in the right place at the right time; • Discrimination—because relevant and important information is filtered by the unique needs of community, group, and individual; and

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 THE PROMISE OF INFORMATION TECHNOLOGY • Integration—because evidence is embedded in work flow, its use is monitored, and effective evidence behaviors are correlated with health outcomes. The CHE collaborates with health organizations, professional groups, and individuals to improve evidence convenience, discrimination, and inte- gration at the point of decision making. A variety of Internet technologies have emerged. They have the following characteristics: • Simplicity—with uncluttered, straightforward, and consistent pre- sentation of information and an intuitive interface that requires a minimum effort to use without training • Accessibility—with rapid access wherever healthcare decisions are made • Sensitivity—to individual and group information preferences • Efficiency—with important information resources organized under a single log-on to reduce the clinicians’ total burden of information management An iterative approach to developing “embedded evidence” systems has benefited from close collaboration with national and regional care societ- ies, health professional organizations, and diverse healthcare institutions in Australia, Canada, and the United States. These have integrated evidence with practice for their members and clients. By attending to the common informational challenges experienced by busy clinicians, an approach to improving information literacy has emerged. This presentation highlights key lessons emerging from more than 10 years of observation involving over 29,000 front-line practitioners. Knowing what to do at the right time and place is a huge challenge for practitioners, but their problem is not one of evidence access. There is vastly too much information to contend with, especially when using the Internet to address common clinical challenges. Instead, their challenge is one of information overload, interface chaos, and access fragmentation. Best evidence is increasingly aggregated in high-quality repositories, but presented by diverse publishers, each with unique ideas about how infor- mation should be organized and how search engines should function. The conscientious clinician struggles to navigate a plethora of products. Those products are not available in the various locations where decision makers guide health care. Many clinicians experience questions in information environments quite different from those in which they reflect on possible answers. The networks, sign-on protocols, resources, firewalls, hardware, and software may be incompatible on the ward, in the clinic, at the of- fice, or at home. The clinicians’ informational experience is particularly fragmented when it comes to health evidence, which may be differentially

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2 EVIDENCE-BASED MEDICINE licensed by individuals, groups, hospitals, professions, and universities. In sum, evidence access often does not translate to evidence availability when and where evidence is most needed. Having evolved an information ecology that works for clinicians, the CHE now promotes and implements a Rule of Fives as a simple expression of what it means to deliver information convenience. A convenient decision support environment will have the following traits: 1. Responsive—because key sources of evidence are open, ready for searching within five seconds anywhere and anytime a clinical practice question arises 2. Proximate—because evidence repositories can be loaded and searched within no more than five mouse clicks from anywhere 3. Guessable—because it takes no more than five minutes to gain suf- ficient orientation to start using a decision support tool, without needing manuals, printouts, or help files 4. Comprehensive—because at least five distinct needs (e.g., commu- nication, collaboration, evidence access, decision support, docu- mentation, and news) are met 5. Rewarding—because users experience at least five practice-changing rewards per week of system use If busy clinicians experience a decreased total informational burden, they will return and use a decision support environment consistently. If they use a resource consistently, then “capture” is achieved and it becomes possible to disseminate new information more effectively. Many healthcare organizations are learning how to deliver evidence in a way that makes it more accessible. Indeed, there is no excuse today, given the quality of Internet services and the existence of high-quality evidence refineries, for not meeting the Rule of Fives. However, even when healthcare workers have rapid access to a smorgasbord of best evidence, information processing barriers can prevent that evidence from connecting with best practices. To apply evidence prudently in practice, clinicians must also be able to discern meaningful and answerable questions and to map them to different ways of knowing. They must know where to find the kind of evi- dence best suited to a particular way of knowing. Having found relevant material, they must then judge the believability, importance, and applica- bility of that evidence, before deciding whether it will do more good than harm to apply the evidence to a specific patient or population. It is important to have access to reputable “external evidence” about what is known from the study of populations other than one’s own, but practitioners and policy makers also need to be able to integrate that infor- mation with evidence from their own populations and settings. “Internal evidence” is increasingly a by-product of the administrative and clinical

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 THE PROMISE OF INFORMATION TECHNOLOGY data repositories supporting the work of healthcare organizations. These databases can be analyzed to better characterize the health risks, unique circumstances, pre-test probabilities, and patterns of health care that deter- mine whether external evidence will deliver on its promise. Equally important is the “personal evidence” that individual prac- titioners accrue over time. This experiential knowledge is rich with the practical details and know-how that ultimately determine whether exter- nal evidence can be applied in practice. Indeed, where researchers may best understand the science of health care, front-line practitioners best understand its application in context. The latest knowledge management products can empower practitioners to build, maintain, and work with collections of personal evidence in ways that encourage hypothesis genera- tion about what works in health care. Ideally, these hypotheses would then make it back to health services researchers who would hone their research to improve the yield of actionable external evidence. The CHE has found that the supporting evidence discrimination is about supporting, recognizing, gathering, and reflecting upon internal and personal evidence. Practitioners learn about discerning issues, asking ques- tions, and positing appropriate rules of evidence and organizational change when they focus on the questions and data sources they know best. More- over, by providing clinician groups with collaborative evidence management tools, “communities of inquiry” can emerge. Ultimately, these change the evidence culture of an organization and, over time, increase capacity for use of best external evidence. The Nemours Foundation, which provides pediatric care in Delaware and Florida, offers an interesting case study. The Nemours hospitals and clinics committed to becoming evidence-based and embarked on a capacity- building initiative in collaboration with the CHE. An “InfoLink” clinician desktop was developed to integrate all clinical, decision support, communi- cation, and collaboration IT. This emphasizes an information ecology that supports effective practice in office, clinic, hospital, and (for reflection) at home. Each practitioner group (e.g., emergency physician, surgeon, and orthopedic nurse) gets a different information environment with relevant, integrated, information resources. Quality resources are made actionable with shortcuts, integrated search engines, and a technology that embeds evidence access within digital health records. Clinicians can highlight any word or phrase, anywhere in any product, then select from a list of infor- mation needs. InfoLink then selects appropriate information resources, conducts a search, and presents decision support information in total com- pliance with the Rule of Fives. All this happens in a way that is optimized for one’s specific clinical discipline and interest group. Currently, such in- stant access is emphasized for drug information, practice guidelines, patient information, and clinical references. Once a clinical care topic or issue is so identified, the “decision-making context” is shared among all available

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 EVIDENCE-BASED MEDICINE evidence resources. The decision maker can switch to a particular product, with its search interface pre-loaded to address the issue at hand. InfoLink departs from the classic library model of evidence to organize resources in an evidence hierarchy of studies, synopses, summaries, syntheses, and systems. Most important are the systems, which present evidence in a way that is actionable within electronic medical records. Another undertaking of the Nemours InfoLink initiative is to provide “information literacy” and “evidence literacy” training at the point of care. This is integrated into the online information environment, allowing clinicians to select topics and progress at a rate that meets their needs. The Users’ Guides Interactive (http://www.usersguides.org) is linked to sources of evidence, allowing on-the-job learning about how to get the most from evidence repositories. This “embedded continuing professional develop- ment” proved essential to improving the use and application of best evi- dence in practice. To support evidence discrimination, our experience suggests that at least five evidence services must be provided where and when healthcare decisions are made: 1. Evidence selection—because the most valid and clinically useful ev- idence repositories are filtered for user groups with specific health disciplines and interests 2. Evidence synthesis—because short, structured summaries of best evidence are offered for knowledge surveillance and maintenance of competence 3. Evidence in context—because the evidence application tools (e.g., algorithms, handouts, and risk assessment tools) are coupled with both clinical data sources and supporting evidence, all in a way that can be accessed as part of clinical work flow 4. Evidence management—because clinicians are able to record and organize questions as they arise, note evidence application issues, and selectively collaborate with colleagues to tap tacit knowledge about using evidence in context 5. Evidence literacy training—because decision makers are supported with embedded continuing professional development tools and resources that allow them to learn and improve their evidence literacy in practice Working with organizations such as the Nemours Foundation, the CHE implements systems that monitor evidence behaviors. This involves record- ing and analyzing patterns of information use in practice. These data are used to help organizations apply a five-domain benchmark to track their path to an “evidence-based organization”:

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 THE PROMISE OF INFORMATION TECHNOLOGY • Level : Integrated information environment. Clinical knowledge, communication, documentation, and decision support coexist in a single-sign-on clinical desktop. • Level 2: External evidence use. Quality sources of external evidence are summarized and linked to healthcare work flow and decision making. • Level : Internal evidence use. Locally relevant information about patients and populations is distilled from clinical and administra- tive data repositories and made available in actionable and inte- gratable formats. • Level : Reflection in practice. Individual and shared (communities of inquiry) tools support the recording of questions and collabora- tive seeking of answers. • Level : Change agency. Embedded information literacy training and evidence literacy training support the emergence and empower- ment of organizational change agents within the organization. Informed choice is facilitated when information about health is con- nected with information about how to improve health. To attract clinician attention, a health information system must be ubiquitous, accessible, de- pendable, and credible. It must present all information—patient reported, clinician observed, and research derived—in a way that highlights its valid- ity, importance, and applicability for individual patients. To retain clinician attention, a health information system must complement, not conflict with, the predominantly oral culture of information exchange in health care. The information tools must make it easier for decision makers to find and use high-quality information when reflecting with colleagues, consultants, and clients. Most importantly, information tools must decrease the clinician’s total informational burden while easing communications with colleagues and participation in virtual learning and decision-making communities. Clinicians’ work should be supported by an information culture that re- wards explicit approaches to uncertainty and acceptance of just-in-time knowledge. INFORMATION TECHNOLOGY TOOLS THAT INFORM AND EMPOWER PATIENTS Peter M. Neupert, Microsoft As a society, we are struggling to identify solutions to alarming trends in disease development, to the untapped potential of new medical discov- eries, and to rapidly rising costs associated with health care. There is a growing role of the consumer as a disruptive agent of change in the broad

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 EVIDENCE-BASED MEDICINE health ecosystem—driven by the need for better information and tools that support the decisions that we, as individuals, are now being asked to make about our health and the health of our families. The consumer needs to be better empowered with tools to make those choices. The availability, por- tability, and sharing and use of health information—through innovations in software—will be key to achieving this transformation. A Decade of Changes The past decade has been a time of unprecedented innovation in bio- logical science that puts us at the threshold of an explosion in data about how our bodies work—right down to the molecular level. The next decade promises to increase that spectrum of data by a factor of thousands (Fig- ure 5-1). Yet our healthcare system is not equipped to manage this volume of information and is struggling to derive value from potentially lifesaving data. The promise of personalized medicine is exciting, but that promise can be realized only if information is made available to the right people, at the right time, and in the right context. The last decade has also been a time when consumers have connected themselves to a global information system—the World Wide Web—in un- precedented numbers, creating a society that has access to, and demands TOMORROW • Continuous location tracking • Constant vital signs monitoring • Transcutaneous monitoring of glucose, ETOH, etc. • Noninvasive testing • Exhaled breath analysis • Testing to maintain wellness • Increased image utilization • Genomic data • Proteomics NOW • Personalized pharmacy • Radiology • Radiology • EKG • EKG • Labs • Labs THEN • Meds • Meds • Monitoring • Monitoring • Monitoring • MD exam • MD exam • MD exam • Nurse observations • Nurse observations • Nurse observations THEN NOW TOMORROW FIGURE 5-1 Data advances in medicine. 5-1.eps

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7 THE PROMISE OF INFORMATION TECHNOLOGY access to, up-to-date information around the clock. Accustomed to having online access to pricing and availability of products and services across other industries such as retail, travel, and financial securities, consumers are demanding to have a healthcare system that centers on their needs and the needs of their family: a system that supports individuals in the decisions we are now being asked to make about our health. The Copernican Shift Four hundred and seventy-seven years ago, Nicolas Copernicus stunned the world by challenging conventional wisdom and claiming that the Earth was not the center of the universe—that in fact the Earth and other planets revolved around the Sun. This required a significant mind shift for people and forced them to radically change centuries of thought that put Earth at the center of the planetary system. The healthcare universe has traditionally revolved around the physi- cian, the person that we as patients relied on implicitly to guide us and make decisions for us, to keep us alive and in good health; the person that served as our gatekeeper to health plans; the person that served as our liaison to pharmaceutical companies. Today’s health information systems all center on the “facility”—whether it is the hospital, doctor’s office, or insurance work flow. None of these systems creates a complete view of the consumer, and most are not accessible to the consumer. The Copernican-like shift that we are experiencing today in health care is moving the patient to the center of this universe, requiring individuals to navigate the healthcare system and make decisions about their health as it relates to treatment choices, behavioral choices, and economic choices. Consumers are making this shift out of necessity. They can see that the system has gaps and that if they don’t actively participate, they may be hurt or inconvenienced by those gaps. This is a shift that has the potential to advance the trend toward per- sonalized medicine, as consumers take more ownership and provide more input to their health and wellness plans. It is also a shift that has the poten- tial to improve the economics of today’s healthcare system. Shifting Roles; Shifting Economics The connected consumer is already demonstrating a demand for health information, with more than 8 million people per day doing health-related searches online, generating an online ad market in excess of $500 million in the United States (Figure 5-2). The financial costs of treatment and support under current health- care models continue to burden society, and are contributing to a shift

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 EVIDENCE-BASED MEDICINE 80% 70% 60% 50% 40% 30% 20% 10% 0% May-Jun 1995 Jul 1996 Nov 1997 Apr-May 1998 Mar 2000 Jul-Aug 2000 Feb 2001 Aug-Sep 2001 Jan 2002 Sep 2002 Mar-May 2003 Feb 2004 May-Jun 2004 Jan 2005 May-Jun 2005 Sep 2005 Jan 2006 Feb-Apr 2006 FIGURE 5-2 Percentage of U.S. adults online. SOURCE: Pew Internet & American Life Project, March 2000-December 2006. 5-2 new.eps All surveys prior to March 2000 were conducted by the Pew Research Center for People & the Press. that sees more focus on prevention and wellness, and more focus on self- management—chronic care management that moves away from hospitals and specialty clinics and into the home environment, with support from family doctors and community institutions. The consumer is being asked to take on an increasing amount of responsibility as it relates to his or her health, and is asking in turn for best practices and actionable information that enables informed decisions around disease prevention and chronic patient care. The opportunity for new forms of preventive care and home-based dis- ease management requires new paradigms for payment and reimbursement. If we find them, we will free up human and economic resources across the healthcare system that today are overburdened. One of the challenges our health system faces centers on the fact that we spend billions of dollars annually looking for new treatment solutions or cures for disease, but col- lectively we do not spend significant dollars on measuring, evaluating, and determining best practices in our health delivery system. Clearly, part of the evidence base we need to build is on best practices of delivery. This shift to the consumer will happen, irrespective of how health care is financed, as either a market-driven or a single-payer environment. The consumer understands that there are gaps in the system and that she cares

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 THE PROMISE OF INFORMATION TECHNOLOGY more about the outcome, has more to lose or gain, than other stakeholders in the system. With consumers as the driving catalyst for change, health services will have to compete for the dollars of the individual, resulting in a system that increasingly competes on quality of care; a system that is increasingly transparent; and a system that is forced to improve its access to and transfer of information. EBM can no longer be a term that we talk about purely as it relates to the clinical community. Consumers too will want to understand what the evidence is and what it means to them. With so many different types of data being aggregated in so many different ways, by so many people, the key to enabling success rests on our ability to create knowledge and understanding from this information in ways that support improved quality and economics of health. Pulling Even with Other Industries The biggest barrier to achieving this kind scenario lies in the frag- mented nature of our health system. Data are dispersed over a variety of facilities, providers, and even our own monitoring devices and home computers. The number of health data silos that have been created just in this country alone is mind-boggling and is working against a system that can deliver evidence-based care. We are not the first industry struggling with fragmentation—in fact we might be the last. The consumer-centric model is one that other industries have had to adopt over the years in order to adapt to changing market needs, and health care is starting to catch up. Historically, the financial services industry was dominated by large institutions—banks, brokerage houses, and insurance companies—that dictated to consumers what they could get, how they could get it, when and where they could get it, and the price or commission they had to pay in order to enjoy the benefit of these services. With the advent of the Internet came the birth of the “self-directed consumer,” and financial services institutions were forced to become more flexible, consumer-centric businesses. Transformation of the industry has enabled financial services organizations to provide a seamless experience for customers, consolidating their interactions across the industry with bank- ing, lending, and brokerage services integrated into a single account. I now cannot imagine a world in which I cannot log into my account and view my account balances, upcoming loan and bill payments, home mortgage balance, line of credit, all transfers, deposits, and other transac- tions. The industry leaders in financial services now provide customers with the information that they need to feel in control throughout the decision- making process.

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20 EVIDENCE-BASED MEDICINE Giving consumers more control and access to more information fosters customers that are more invested in their financial situation and are more invested in the institution that has helped them achieve their new level of confidence. The financial services organizations that are prospering today are the ones who responded to, and now understand, the self-directed consumer. Solving Healthcare Fragmentation: The Strategic Role of Software In looking at the challenges of the health ecosystem, any solution has to be broad enough to include stakeholders from across the spectrum of care, secure enough to promote trust, and open enough to encourage seamless adoption. We believe that the individual is a possible change agent for healthcare fragmentation, and so the right solution is one that puts the consumer at the center of healthcare system, enabling consumers to be the aggregators of their information. A consumer-centric solution requires two things: 1. A private and secure data storage and sharing platform that will enable the seamless exchange of data between thousands of health applications and devices 2. An online solution tied to the platform that makes it easier for con- sumers to collect, persistently store, share, and act on their health data—private data that are entirely under their control This platform needs to be inclusive of standards, and it needs to have the principles of privacy in place to earn the trust of consumers, while enabling the reuse of data. The same platform has to connect consumers with information from their physicians and extended care team, their health plans, pharmacies, and any number of devices that they use to track health and fitness behaviors. Microsoft HealthVault Platform Looking at consumer health needs and the industry’s challenges, we de- veloped and released in beta format, Microsoft® HealthVault™ in October of 2007. Microsoft HealthVault is a free Web-based platform designed to put people in control of their health data. It helps them collect, store, and share health information with family members and participating healthcare providers, and it provides people with a choice of third-party applications, services, and devices to help them manage things such as fitness, diet, and health. HealthVault also provides a privacy- and security-enhanced founda- tion on which a broad ecosystem of players—from medical providers and

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2 THE PROMISE OF INFORMATION TECHNOLOGY health and wellness device manufactures to health associations—can build innovative new health and wellness management solutions to help put people in control of their and their family’s health. At Microsoft, we are committed to making it easy for users to import and export their data. We are not trying to lock anybody in. We are trying to be a catalyst for data liquidity in the broader health ecosystem, and we encourage folks to begin to start to think about that, and to start to make that happen. In developing HealthVault, we decided to make it free to users, and free to software developers, as the best way to spark innovation across the industry, and to encourage adoption and data liquidity. The individual consumer is the aggregator, pulling the information to- gether from across data sources such as dispersed patient records, prescrip- tion drug records, fitness and diet plans, and vital signs through external medical devices (blood pressure monitors, blood glucose monitors, etc.) that plug into the computer network. As controlled by the consumer, any part of this information may then be shared privately and securely with family member caregivers, with physicians and other health providers, or with anyone else the consumer chooses. Many people want to be actively engaged in their everyday health, in monitoring and learning about what it is that can make them feel better, but without appropriate support systems, data today mostly get lost. Eight years ago most people would not have imagined how different life would be today by being able to connect to people and to information, wherever you are, at any time. The long-term promise of HealthVault and its broad ecosystem of health partners is that having more data—and the software tools that allow us to gain insight from the data—will enable us, and the members of our extended care teams, to better understand the many real-life interactions and situations we encounter and to improve the everyday choices that we are making about our health. Starting with Search The beginning point for almost all consumer online experiences today starts with a search. Consumers start with searches because they have a need, and they are in the mode of “discover and learn” about that need. Studies show that between 65 and 70 percent of people start with a targeted search and from there access numerous online information sources. To better fill this need, Microsoft has also developed HealthVault Search, a new Web search service that uses the storage capabilities of the HealthVault platform. HealthVault Search helps people discover answers to their health questions, learn more about topics important to them, con- fidentially store the information they discover, and act on that knowledge to improve their health and wellness. Furthermore, HealthVault Search in-

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22 EVIDENCE-BASED MEDICINE tuitively organizes the most relevant online health content, allowing people to refine searches more efficiently and with more accuracy. Users want more than just to learn; they want to act to fix their need (Figure 5-3). We developed HealthVault Search as an entry point to the Microsoft HealthVault platform and as a way to ensure that consumers are finding the information they need, when they need it. In the context of the search experience, advertising is a key component of the content and is FIGURE 5-3 Online health users’ reasons for leveraging the Internet. SOURCE: Levy, 2007. Reprinted with permission from JupiterResearch, LLC.

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2 THE PROMISE OF INFORMATION TECHNOLOGY actually a benefit to the consumer. However, advertisers need to help with the evidence around their claims if they want to be trusted by consumers. If advertisers can use their knowledge to communicate relevant information to consumers in a trusted and transparent way, ads will become part of the broader decision-making process. Health search is a good business model and it can be used to create a platform of connecting consumers with data and with services, but it should never compromise the patient-physician relationship. Done in the right way, it can promote the sharing of information that individuals can use with their physicians to guide health decisions. Protecting Your Health Data We know that personal health information is some of the most sensi- tive data in people’s lives. Assuring that confidential records are secured against theft, loss, or damage is crucial to earning and maintaining patients’ confidence in the healthcare system and increasing their adop- tion of health IT, making them more likely to seek treatment and in turn live healthier lives. In developing the Microsoft HealthVault platform and HealthVault Search application, we took an industry-leading approach to implement- ing privacy principles. The platform is underpinned by the following clear, strong, health privacy commitments: 1. The Microsoft HealthVault record you create is controlled by you. 2. You decide what goes into your HealthVault record. 3. You decide who can see and use your information on a case-by-case basis. 4. We do not use your health information for commercial purposes unless we ask and you clearly tell us we may. Our HealthVault Search also sets a new industry benchmark for con- sumer privacy, as shown in Table 5-1. Consumers can store and control an array of health information in their Microsoft HealthVault records, including prescription medication lists, health histories, hospital discharge summaries, lab results, fitness data, and HealthVault Search results. The technology is straightforward and makes it easy to confidently share health information with family, care- givers, or physicians. Simple information sharing among patients, physi- cians, and organizations will help promote greater efficiency, fewer errors, and better care.

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2 EVIDENCE-BASED MEDICINE TABLE 5-1 HealthVault Search Versus Other Health Search Options Online HealthVault Search Other Health Search All traffic between users and search. Searching is not encrypted; traffic (including healthvault.com is encrypted keywords) can be intercepted and read Identifies users using cookies for 90 days Will put a persistent identifier on a user’s computer and use it to track users as they travel across the Web for years We do not use behavioral targeting using Will target ads based on past searches, information in HealthVault accounts past advertising responses, demographic information, time of day, etc. We delete our server and application logs Keeps search information, including unique after 90 days identifiers, for long periods of time We do not keep track of individual query Knows what you searched on over your past histories across sessions visits Battling Health and Aging Trends As our population ages and loads the system with a proportional increase in health issues, our current approach to managing health and delivering care is not sustainable from an economic standpoint. Today’s health system is too focused on acute care and late-stage disease, address- ing illness at an advanced stage, where treatment is extremely costly and often ineffective. For the healthcare delivery system to continue to be viable there must be a radical shift to relieve pressure on strained and expensive human and infrastructural resources. This change will require a focus on personal prevention and wellness, a shift that will in large part be enabled by tech- nologies available at low cost to the mass market. Enabling individuals to monitor and maintain their own health can take a great deal of the burden of healthcare delivery off the shoulders of medical practitioners, allowing them to focus on more valuable and complex care. If people could more easily track and understand information such as their blood glucose levels and cholesterol levels—indeed, if that personal information was available at the press of a button—individuals might be more encouraged to take responsibility for their health before symptoms of illness appear. And we would have a new environment in which to motivate and educate users regarding behaviors and compliance. As today’s science evolves into tomorrow’s technology, physicians will be able to determine a patient’s level of disease risk based on an analysis of his or her genes or environmental factors. They will be able to develop a

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2 THE PROMISE OF INFORMATION TECHNOLOGY personalized treatment plan and guide clinical trial participation and strati- fication based on a patient’s genomic and biochemical makeup. By integrating this with the other medical information, individuals can gain more insight and get actionable guidance toward their diets, proactive measures to improve their health, and the efficacy of medicines for them. However, they can only do this if they have the ability to access and derive meaning from this information. The challenge does not lie in recognizing the potential for breakthroughs in health but in realizing this potential by providing the right tools to find the data that are relevant to you, extract information from the data, and convert that information to actionable knowledge. Start of a Long Journey Health care is a big and complex issue, and no single entity is go- ing to fix it alone; a collaborative industry approach is the only way to get there. At Microsoft, our health vision is simple: We want to improve health around the world. We believe that a solution that puts consumers in control and positions them as agents of change is an important first step to achieving this vision, in partnership with stakeholders from across the health system. We hope that everyone will join us on what we know will be a long, but important journey. REFERENCE Levy, M. 2007. U.S. health consumer survey, 2007: Understanding search behavior. New York: JupiterResearch, LLC.

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