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Patients’ and Families’ Use of Health IT: Concerns About Safety

While much of the focus of this report is on health IT products that are intended to support clinicians and health care delivery organizations, health IT products are also being developed to engage and support patients in health-related decision making and management of their own personal health information. This chapter discusses a few of these tools, which are often seen as supporting patient engagement and the relationship, if any, between use of these tools and patient safety.

PATIENT-CENTERED CARE AND THE ROLE OF HEALTH IT

Patient-centered care, and patient and family engagement in health care, has been a growing priority in national health policy discussions. The Institute of Medicine (IOM) identified patient-centeredness as one of the six aims of quality health care (IOM, 2001). Federal and private-sector agents have echoed this patient-centered focus in several recent policy and position statements. The National Quality Forum’s National Priorities Partnership, for example, has called for care that is both patient-centered and engages patients and their families (NQF, 2011), and the Department of Health and Human Services’ National Quality Strategy declared as a priority “that each person and family is engaged as partners in their care” (HHS, 2011). More recently the discussion also has focused on the role that information technology can play in achieving some patient-engagement goals. In its 2010 report, the President’s Council of Advisors on Science and Technology asserted that health information technology “can help patients become more involved in their own care, which is especially important in managing



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5 Patients’ and Families’ Use of Health IT: Concerns About Safety While much of the focus of this report is on health IT products that are intended to support clinicians and health care delivery organizations, health IT products are also being developed to engage and support patients in health-related decision making and management of their own personal health information. This chapter discusses a few of these tools, which are often seen as supporting patient engagement and the relationship, if any, between use of these tools and patient safety. PATIENT-CENTERED CARE AND THE ROLE OF HEALTH IT Patient-centered care, and patient and family engagement in health care, has been a growing priority in national health policy discussions. The Institute of Medicine (IOM) identified patient-centeredness as one of the six aims of quality health care (IOM, 2001). Federal and private-sector agents have echoed this patient-centered focus in several recent policy and position statements. The National Quality Forum’s National Priorities Partnership, for example, has called for care that is both patient-centered and engages patients and their families (NQF, 2011), and the Department of Health and Human Services’ National Quality Strategy declared as a priority “that each person and family is engaged as partners in their care” (HHS, 2011). More recently the discussion also has focused on the role that information technology can play in achieving some patient-engagement goals. In its 2010 report, the President’s Council of Advisors on Science and Technol- ogy asserted that health information technology “can help patients become more involved in their own care, which is especially important in managing 115

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116 HEALTH IT AND PATIENT SAFETY chronic conditions” (PCAST, 2010). Consistent with this, the Office of the National Coordinator for Health Information Technology (ONC) included a goal of “empower[ing] individuals with health IT to improve their health and the health care system” in its draft federal health IT strategic plan (ONC, 2011) and has included this goal in the criteria for its meaningful use program. Over time, discussions of patient or family engagement in health care have tended to revolve around three topics: 1. Patients’ access to their own personal health data in electronic formats (personal health information management); 2. Patients’ access to evidence-based information about their medical conditions, treatment options, and health-promoting activities and behaviors (more than 80 percent of Internet users in the United States search for health information online (Pew Research Center, 2011); and 3. Effective communication between a patient (and family or care- giver) and health care providers and the health care delivery system so as to improve safety and quality. Such discussions center on the belief that patients who have the tools to manage their own health care data, who have ready access to reliable health-related information, and/or who can communicate more effectively with health professionals will be capable of making more informed deci- sions and will experience better outcomes. Recent trends with personal health records (PHRs) indicate that patient engagement tools may have a role in allowing patients and their families to become more involved in their care. Therefore, the impact of the growing use of patient engagement tools on patient safety should be considered. GROWTH OF CONSUMER HEALTH IT There has been rapid growth of consumer health IT in recent years designed for the purpose of enabling patients and their families to become truly engaged consumers of health care (Poon et al., 2007). Tools such as PHRs can help patients feel more knowledgeable about their conditions, offer shared decision making, and can lead to fewer gaps in care (California HealthCare Foundation, 2010; Detmer et al., 2008; Zhou et al., 2010). For example, one study found that patients had eight times more adverse events than noted in their medical records when asked directly if they had experienced a problem with a drug (Gandhi et al., 2003). Importantly, PHRs can also be used to improve communications between patients and health professionals.

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117 PATIENTS’ AND FAMILIES’ USE OF HEALTH IT It is reasonable to assume that, over time, patient interest in health IT resources will increase, especially given the broad appeal of general Internet use, including social networking and other consumer-oriented web services. Among American health care consumers, considerable interest exists in Internet access to personal health information stored on electronic health records (EHRs). Across several surveys, 76 to 86 percent of respondents ex- pressed interest in having access to their health information over the Internet (Fricton and Davies, 2008; Patel et al., 2010; Wen et al., 2010); however, at that time, 1 in 11 had experience doing so (Wen et al., 2010). It has been found that people pay more attention to and become more engaged in their health and medical care when they have easy online access to their health information (Skorve, 2010). In addition, patient “engagement” and “centeredness” have become ubiquitous goals and objectives of many policies and programs promoted by health reform. For many engaged in realizing these goals, widespread adoption and use of health IT by the public is a necessary, if not sufficient, condition. Within the very large and heterogeneous category of consumer- focused health IT, a few have the potential to increase patient engagement in their own health management (see Box 5-1). To better understand the impact of consumer health IT, the Agency for Healthcare Research and Quality (AHRQ) held a workshop and issued a B OX 5-1 Sample of Consumer Health IT Tools and Services • ersonal health records (integrated and free standing) P • pplications on common devices like smart phones (technology A that provides voice and text communication, video and transmis- sion of wireless monitoring data) • ccess to health information (via multiple electronic sources) A • ntegration with remote monitoring (personal and home devices I and observation systems) • nternet-based social networking and support I • nternet-based search engines and electronic knowledge bases I • nternet-based administrative services that support care coordina- I tion (appointment scheduling, prescription refills, lab results) • ecision support tools for assessing day-to-day health status or D progress toward a health-specific goal (e.g., weight loss, glucose control, caloric intake, cardiac fitness) • evices supporting remote monitoring and transmission of data D (e.g., from a patient’s home environment to a clinician or health “coach”)

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118 HEALTH IT AND PATIENT SAFETY report in 2010 recognizing that the contribution of consumer health IT to intended and unintended consequences will need to be analyzed continu- ally. The report recommended “[r]igorous research is needed to examine the impact of consumer health IT use on various outcomes (including be- havioral, clinical, patient experience, provider experience, efficiency, and unanticipated outcomes), and the specific relationship of design to those outcomes” (Wilson and Peterson, 2010). PERSONAL HEALTH RECORDS One tool of particular importance to engage patients and their families is the PHR. PHRs may include features such as health and lifestyle records, ability to book appointments and receive reminders, patient–doctor mes- saging, and consultation summaries. PHRs are classified as either integrated PHRs or freestanding PHRs. The extent of the differences depends on the specific implementation of the PHR, but this discussion focuses on data and content, stewardship, and self-management features and tools. While considerations of privacy, security, and confidentiality are critical to the development of PHRs, the committee deemed full discussion of these issues to be outside the statement of task. Data and Content Integrated PHRs are an essential component of many EHR systems. Data from a resource (e.g., EHRs, insurance claims) populate an integrated PHR. Many of these systems typically offer a portal for secure, online patient access and can serve as an interface to provide useful information to both patients and health professionals. The patient is given a view to key elements of the EHR. In some integrated PHRs, patients can add supple- mental data under the broad heading of patient experience, including activi- ties of daily living, reactions to treatments, self-management activities such as exercise, dietary diaries, and data collected from another primary device (e.g., glucometer readings, scales, blood pressure devices). Patients may also amend data, track progress on chronic health issues, and/or otherwise inter- act with their care team via the portal. Patients can download their PHR to paper or electronic format for transport. While it is difficult to build an integrated PHR that allows health professionals to communicate effectively with their patients, a few EHRs do this well and could serve as models as other products are developed. Freestanding PHRs such as Microsoft HealthVault are not linked to an EHR, although many of them may allow individuals to access data from different providers’ EHRs. Enabling measures such as the “blue button” concept developed by the Markle Foundation (Ellerin Health Media, 2010)

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119 PATIENTS’ AND FAMILIES’ USE OF HEALTH IT could help consumers download electronic copies of health records to a location of their choice; this capability exists with the MyHealtheVet and MyMedicare. They may be especially useful to the health of certain popula- tion groups such as migrant workers (MiVia, 2011). Stewardship One primary distinction between integrated and freestanding PHRs is that many integrated PHRs do not require patients to actively manage or maintain their data yet still allow access to clinical data. In contrast, the individual (and possibly his legal proxy) is typically primarily responsible for initiating and maintaining all aspects of a freestanding PHR—including collecting, organizing, and storing data—but there are potentially fewer opportunities to validate secondarily or verify the accuracy of content. Thus, the individual patient controls all aspects of the freestanding PHR. Self-Management Features and Tools In addition to serving as a repository of personal health data, PHRs may provide patients with other health management and communication tools. Portals within integrated PHRs provide access to records and data, as well as convenience tools for appointments, prescriptions, billing questions, and other communications. To date, freestanding PHRs have had more limited adoption than inte- grated PHRs. The future of freestanding PHRs is unclear (Google decided in June 2011 to discontinue marketing and supporting its application Google Health). MITIGATING SAFETY RISKS OF PATIENT ENGAGEMENT TOOLS: “RULES OF ENGAGEMENT” The discussion of Chapter 3 introduced the idea of viewing health IT as a component in a larger sociotechnical system that includes technology, people, processes, organizational practices, and the external environment. Adding patients themselves inserts an additional layer of complexity in thinking about how to enhance the safety of patient safety tools in actual use. For example, although PHRs and other patient engagement tools are designed to have a positive impact on patients’ management of their own health, computer-mediated interactions between people are known to be more prone to misinterpretation and misunderstanding than interactions conducted face-to-face (Epley and Kruger, 2005; Kruger et al., 2005). Given the importance of clear patient-provider communications, special attention may have to be devoted to ensuring that computer-mediated interactions

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120 HEALTH IT AND PATIENT SAFETY are not used inappropriately. Compensation and payment plans and/or job expectations for care providers may have to be adjusted if sufficient amounts of useful information are to be delivered to patients. Freestanding PHRs will need to be designed so that health professionals can track easily and clearly the provenance, accuracy, and currency of data that they did not themselves enter. Health professionals will need to establish procedures to identify and correct errors in an integrated PHR. To be most effective, these mechanisms have to be communicated to patients and their families. Questions surrounding how PHRs can facilitate communications will require health professionals to manage patient expectations. Health profes- sionals and patients and their families need to develop a shared understand- ing of appropriate use of patient-entered, validated data. An example of an expectation to be discussed is the types of health problems that are both ap- propriate and inappropriate for electronic models of communication alone. Managing expectations of both patients and health professionals as to the currency of information and the turnaround time for various applications can have implications for patient safety. PHRs and other patient engagement tools will benefit from employing user-centered design that enhances the ability of patients and their families to take part in their care management and coordination. There is growing interest in providing mechanisms that support patient and family feedback to providers and clinicians about their experiences of care so as to inform safety and quality improvement. Innovative and flexible applications offer greater opportunity for engagement (Brennan et al., 2010). Features might include using general IT solutions familiar to patients and their families (both non-Internet-based and Internet-based). Simple, easy data entry ought to be available through a variety of different means (e.g., touch interface, key strokes, mouse). Common international standards for such patient ap- plications may reduce confusion and support both utilization and safe use. An international team has developed a global EHR template standard for PHRs that offers patients the flexibility of the record summary remaining on the web, being stored in a cell phone, being used on a computer, or being stored on a flash drive (Li et al., 2012). Such a ubiquitous standard for data structure and minimal EHR elements offers an excellent research opportunity for greater use and also safety studies. Use of mobile applications (mobile apps) has become more widespread and a wide variety of mobile medical apps has been developed. As of July 2011, the Food and Drug Administration (FDA) has issued draft guidance stating that it will only regulate mobile applications that either impact the performance or functionality of currently regulated medical devices or have conventionally been considered medical devices. These apps will be classified and regulated similarly to other medical devices under FDA’s jurisdiction. Apps to be used as PHRs, to track general health and wellness

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121 PATIENTS’ AND FAMILIES’ USE OF HEALTH IT such as dietary logs and calorie counters, and to automate common medical knowledge will only be regulated at FDA’s discretion (FDA, 2011). As new apps are developed that serve patients and their families as a mobile medical device, their impact on safety will need to be examined. It is important to note that, although not directly related to safety, over- reliance on technology as a vehicle to provide patients access to their health data or other decision-making tools may create barriers for many con- sumers. Limited access by some populations as a result of the availability of hardware and high-speed Internet connectivity may diminish broad access and create inequities or exacerbate disparities. Furthermore, obtaining the knowledge and skills needed to navigate the Internet, sign up for portal ac- cess, and then use the sites effectively may be intimidating, challenging, or impossible for some patients. English-language proficiency, health literacy levels, and numeracy skills all play important roles in the ability of an indi- vidual to interpret, understand, and use most of the data and information stored in electronic records, much as in paper records (Yamin et al., 2011). POPULATION HEALTH MANAGEMENT Technologies are emerging that will enhance tracking of population health. Reporting of conditions to health departments, and recording emer- gency and natural disaster situations, can inform community and public health officials about health and illness patterns and needs. Populating databases about lifestyle, healthy behaviors, and disease prevention inter- ventions will add new knowledge to our system that currently focuses mainly on diseases and treatment. As data are analyzed across communities, workers and clinicians can learn about local health risks and disease rates. In addition to reporting and querying information, core functionalities of a population health record would include generating alerts, identifying disease outbreaks and trends, identifying geographic influences on illness, and reporting of behaviors impacting health or development of disease (Friedman and Parrish, 2010). Longitudinal records can bring together data from PHRs, EHRs, and public health agencies. Eventually, analysis of health care equity across populations may guide approaches to eliminate health disparities. PHRs can boost patient safety not only at the individual level but also for aggregate populations. Accessing patient information across care set- tings is essential to future enhancements in safe delivery of care (Kilbridge and Classen, 2008). As communities promote nationwide exchange of health information, pooling of information about consumer engagement and learning strategies can reveal approaches for better integration of PHRs with provider records and engagement of consumers in health-promoting behaviors.

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122 HEALTH IT AND PATIENT SAFETY CONCLUSION The field of patient engagement tools that rely on health IT is rapidly developing and offers many potential benefits to patient care. However, the unintended consequences these tools may have, such as threats to patient safety, have not been adequately studied. The increasing use of health IT by consumers, patients, and families creates an urgent need for the develop- ment and support of a research agenda to inform future public policy about the design, implementation, and use of such tools. REFERENCES Brennan, P. F., S. Downs, and G. Casper. 2010. Project HealthDesign: Rethinking the power and potential of personal health records. Journal of Biomedical Informatics 43(5 Suppl 1):S3-S5. California HealthCare Foundation. 2010. Consumers and health information technology: A survey. Oakland, CA. Detmer, D., M. Bloomrosen, B. Raymond, and P. Tang. 2008. Integrated personal health records: Transformative tools for consumer-centric care. BMC Medical Informatics and Decision Making 8:45. Ellerin Health Media. 2010. Markle Foundation and the blue button. http://ellerinhealthmedia. com/2010/10/19/markle-foundation-and-the-blue-button/ (accessed June 27, 2011). Epley, N., and J. Kruger. 2005. When what you type isn’t what they read: The perseverance of stereotypes and expectancies over e-mail. Journal of Experimental Social Psychology 41:414-422. FDA (Food and Drug Adminisitration). 2011. Draft guidance for industry and Food and Drug Administration staff—mobile medical applications. Fricton, J. R., and D. Davies. 2008. Personal health records to improve health information exchange and patient safety technology and medication safety. In Advances in patient safety: New directions and alternative approaches, Vol. 4. Rockville, MD: Agency for Healthcare Research and Quality. Friedman, D. J., and R. G. Parrish. 2010. The population health record: Concepts, definition, design, and implementation. Journal of the American Medical Informatics Association 17(4):359-366. Gandhi, T. K., S. N. Weingart, J. Borus, A. C. Seger, J. Peterson, E. Burdick, D. L. Seger, K. Shu, F. Federico, L. L. Leape, and D.W. Bates. 2003. Adverse drug events in ambulatory care. New England Journal of Medicine 348(16):1556-1564. HHS (Department of Health and Human Services). 2011. Report to Congress: National strat- egy for quality improvement in health care. http://www.healthcare.gov/center/reports/ quality03212011a.html#es (accessed June 27, 2011). IOM (Institute of Medicine). 2001. Crossing the quality chasm: A new health system for the 21st century. Washington, DC: National Academy Press. Kilbridge, P. M., and D. C. Classen. 2008. The informatics opportunities at the intersection of patient safety and clinical informatics. Journal of the American Medical Informatics Association 15(4):397-407. Kruger, J., N. Epley, J. Parker, Z. Ng. 2005. Egocentrism over e-mail: Can we communicate as well as we think? Journal of Personality and Social Psychology 89(6):925-936.

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