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Electronic Personal Health Records That Promote Self-Management in Chronic Illness

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Beverly Mitchell, BScN, MSN, RN
Deborah L. Begoray, PhD

Abstract

Adequate health literacy is critical for patients charged with the responsibility of self-managing chronic conditions, such as chronic obstructive pulmonary disease (COPD). In COPD, complex care demands require patients to be able to access, comprehend, and evaluate multiple sources of health information. Self-management education programs aim to empower patients by providing information and by teaching skills that can improve self-care and enable patients to live fuller and more functional lives. A growing trend in self-management is to offer patients access to their health information through the use of electronic personal health records (PHRs). However, there needs to be a match between patients’ health literacy levels and the PHR software used in electronic PHRs to effectively promote self-management. In this article the authors use COPD as an example of a chronic illness that can be self-managed through the use of electronic PHRs. They begin by providing overviews of COPD management, self-management, health literacy, and the use of electronic personal healthrecords as self-management tools. Then they draw upon Nutbeam’s health literacy framework to guide healthcare providers in matching a patient’s health literacy level with a software program appropriate for a particular patient.

Citation: Mitchell, B., Begoray, D., (July 20, 2010) "Electronic Personal Health Records That Promote Self-Management in Chronic Illness" OJIN: The Online Journal of Issues in Nursing Vol. 15 No. 3.

DOI: 10.3912/OJIN.Vol15No03PPT01

Keywords: health literacy, patient empowerment, electronic personal health records, chronic illness, chronic obstructive pulmonary disease, self-management, health education, Nutbeam’s health literacy framework

For PHRs to be effective in promoting self-management patients need an adequate level of health literacy and a software health record program appropriate to (a good match with) their health literacy level. The significant economic and social burdens of chronic disease have led to a shift in health policy involving a focus on self-management (Jordan & Osborne, 2007). Chronic disease self-management programs seek to empower patients both by providing information and by teaching skills to improve self-care and provider-patient interactions. A growing trend in many countries is to offer patients access to their health information through the use of electronic personal health records (PHRs). These electronic health records can assist patients in managing their health condition through individualized care plans, graphing of symptoms, passive biofeedback, tailored instructive or motivational feedback, decisional aids, and reminders (Pagliari, Detmer, & Singleton, 2007). However, the value of any self-management program or intervention is influenced by its acceptability and usability. For PHRs to be effective in promoting self-management patients need an adequate level of health literacy and a software health record program appropriate to (a good match with) their health literacy level.

In this article COPD will be presented as an example of a chronic illness that can be self-managed through the use of electronic PHRs. COPD is a major public health problem, ranking as the fourth leading cause of chronic morbidity and mortality throughout the world. The World Health Organization has projected that COPD will rank fifth as a worldwide burden of disease by 2020 (Pauwels, Buist, Calverley, Jenkins, & Hurd, 2001). In the United States (US), COPD affects approximately 10.2 million adults (or 5.95% of the adult population) and is a leading cause of hospitalization, particularly among older populations (ages 55 – 75 years) (Mannino, 2002). A Canadian survey showed incidence rates increased from 4.6% in the 55 – 64 age group to 6.8% in those over 75 years of age (Viegi, 2001).

Due to the complex care demands of COPD, health literacy is critical for self-management, as patients need to be able to access, comprehend, and evaluate multiple sources of health information. Electronic PHRs (subsequently referred to a PHRs) have the potential to facilitate self-management in COPD patients. However, unless the patient’s health literacy level meets the demands required to use the assigned PHR software program, the patient’s limited level of health literacy will become a barrier to the use of the PHR. We will begin this article with overviews of COPD management, self-management, health literacy, and the use of PHRs as self-management tools. Then we will draw upon Nutbeam’s health literacy framework to guide providers in matching a patient’s health literacy level with a self-management software program appropriate for that patient.

Chronic Obstructive Pulmonary Disease

COPD is characterized by chronic airway inflammation and an airflow limitation that is not fully reversible and is usually progressive. It is associated with an abnormal inflammatory response of the lungs to noxious particles or gases. COPD patients commonly present with symptoms of chronic cough, sputum production, wheezing, dyspnea, forced expiration, and a history of exposure to known risk factors, primarily cigarette smoking (Pauwels et al., 2001). Symptoms are often severe enough to limit normal physical activities of daily living and can negatively impact quality of life (Bourbeau et al., 2003). These limitations put COPD patients at a significant risk for social isolation and depression (Roberts, Ghiassi, & Partridge, 2008).

The management of COPD focuses on relieving symptoms, preventing disease progression and complications, and improving exercise tolerance and health status (Pauwels et al., 2001). Pharmacological treatment and pulmonary rehabilitation are large components of the management of COPD. However, health education also plays a very important role in improving a patient’s coping ability and health management. Goals of COPD health education are generally to demonstrate of positive behavioural changes and improve the patient’s quality of life (Neri, 2008). Health education for COPD patients is designed to support patients in seeking and obtaining safe and appropriate care, enhance their understanding of the disease, promote correct drug usage, and comply with physician orders (Neri, 2008). Specific educational topics include adoption of a healthy lifestyle (smoking cessation, nutrition, sleep habits); insight into COPD and disease pathophysiology and treatments; strategies to assist with dyspnea and energy conservation during daily activities; relaxation exercises; self-management skills; advice about when to seek help; advance directives and end-of-life decision-making considerations; and self-management skills (Bourbeau, 2003; Pauwels et al., 2001). The goal of COPD treatment is for patients to assume responsibility in self-managing their illness. Meeting this goal can be enhanced by facilitating adequate health literacy levels and designing PHRs to match the patient’s level of health literacy.

Self-Management

The intentions for self-management interventions are to enable patients to...be active participants in their own care, and to enhance their ability to make sound health decisions. The societal and economic burden imposed by chronic disease has resulted in recent years in a shift in health policy that focuses on health promotion, chronic disease prevention, and self-management. The intentions for self-management interventions are to enable patients to become empowered, i.e., to be active participants in their own care, and to enhance their ability to make sound health decisions. Common to all models of self-management is the notion that patients are central to the management of their own health.

The concept of self-management is understood as both an educative process and an outcome. As an educative process, self-management programs include: participation in education designed to bring about specific outcomes; preparation of individuals to manage their health condition on a day-to-day basis; the practice of specific behaviours; and the development of skills and abilities needed to reduce the physical and emotional impact of illness, with or without the collaboration of the healthcare team (McGowan, 2005). Self-management programs range from simple, self-help approaches to intensive case-management programs designed to promote continuity, communication, and collaboration between patients and providers. As an outcome, self-management programs for the chronically ill aim to have participants achieve the knowledge, skills, and confidence to manage their health and engage in particular behaviours that control or reduce the impact of the disease (McGowan, 2005). This necessitates that patients become active partners with healthcare providers to the extent that they can take effective control over the chronic condition(s) in their life (Loring, 1993: National Health Service, United Kingdom, 2001).

This new paradigm of self-management has sparked debates regarding the expected level of individual responsibility and the expectations that individuals demonstrate the capacity to manage their health and wellbeing (Peerson & Saunders, 2009). Many chronic diseases, such as asthma and diabetes, have been shown to be largely self-manageable. Self-management programs for COPD patients have been shown to be useful in treating patients with COPD (Neri, 2008). Yet even well-designed self management programs cannot, in themselves, enable patients to manage their own health. Patients also need an adequate level of health literacy if they are to manage their own chronic illnesses

Health Literacy

Health literacy has been identified as being fundamental to patient engagement in the self-management of their disease (Coulter & Ellins, 2007; Levin-Zamir & Peterburg, 2001). Broadly defined, health literacy refers to the extent to which an individual is able to access and accurately interpret and evaluate health information. Kickbusch, Wait, and Maag (2005) went beyond the retrieval, interpretation, and evaluation of health information, and defined health literacy as a “critical empowerment strategy to increase people’s control over their health” (p. 8). Zarcadoolas, Pleasant, and Greer (2005) also spoke to the skills and competencies individuals develop “to make informed choices, reduce health risks and increase quality of life” (p.197).

Research has shown that individuals with lower health literacy levels are less knowledgeable about diseases, demonstrate lower rates of preventative care, have poorer adherence to medical instructions, are less successful in self-management, and lack the ability to make effective use of the healthcare system (Cho et al., 2008; Porr et al., 2006; Wolf et al., 2005). Moreover, inadequate health literacy has been independently associated with poorer physical and mental health and greater limitations in routine activities. Lower health literacy levels are particularly prevalent among older populations, minorities, those with lower levels of educational attainment, and those having a chronic disease (Paasche-Orlow et al., 2006; Wolf, Gazmararian, & Baker, 2005). Many COPD patients are between the ages of 55 – 75 and, according to the Canadian Council on Learning (CCL), people over 65 are considered to be one of the most vulnerable groups due to poor literacy levels (2008a). In Canada, estimates of inadequate health literacy amongst older populations are as high as 88%. In the United States, the 2003 National Assessment of Adult Learning Literacy reported only 3% of adults over age 65 as being proficient in health literacy skills (Kutner, Greenberg, Jin, & Paulson, 2006).

The goal of health literacy, like that of self-management, is to improve individual health outcomes by enhancing skills that will lead to greater and more effective engagement in the management of a patient’s illness(es). PHRs, too, are designed to engage patients in the management of their own illnesses. However, if PHR systems are too difficult for patients to manage, i.e., if there is a poor fit between the system demands (requirements to use the system) and patient ability, then improved health outcomes will not occur. On the other hand, well-constructed, clear, and usable PHRs can promote health literacy and disease self-management by enabling more patient engagement and empowerment as described below.

The Electronic Personal Health Record

PHRs are seen both as a strategy to make healthcare more patient centered and as a tool for self-management (Lubor et al., 2006). Applications (software programs) have been designed to offer decision-support tools; facilitate access to a wide variety of sources of information and community online networks; and, when integrated with providers, support patient-provider collaboration and communication. Pagliari, Detmer, and Singleton (2007) have described PHRs as an electronic application through which individuals can access, manage, and share their health information in a private, confidential, and secure environment. Basic applications allow patients to generate health records, manage information about their current health status, and maintain laboratory results and diagnostic images. More complex PHRs integrate patient record keeping with providers’ information systems, and offer the ability to track their health status in conjunction with providers. Enhanced software capabilities may include the ability to book hospital appointments, chart and store health indicators such as blood pressure or weight, set up auto-generated email reminders; provide access to a provider database; and link to online health information (Pagliari et al.). PHRs that are integrated with a clinic’s electronic medical record can promote continuity of care and collaboration through disease tracking and providing an ongoing connection between patients and providers, thus promoting earlier intervention when problems are encountered and potentially avoiding hospitalization (Tang et al., 2006).

Failure of patients to use PHRs will result in the unintended consequence of low-literacy patients being excluded from the benefits of self-management programs. Thus PHRs have the potential to empower patients through greater access to personal data and information related to their disease conditions. However, for this to occur, the PHR software programs must be in alignment with patients’ literacy and computer skills, so that they can understand and accept the roles and responsibilities related to managing their own healthcare. This means there needs to be a match between patients’ health literacy levels and PHR software in order for PHRs to promote patient empowerment and autonomy. Efforts to use electronic PHRs to promote self-management will be thwarted if the software programs offered are not manageable for patients with limited literacy. Failure of patients to use PHRs will result in the unintended consequence of low-literacy patients being excluded from the benefits of self-management programs. Such an unintended consequence could increase health inequalities and put patients at unnecessary risk, thus becoming an issue of social justice (Newman, 2008; Nutbeam, 2008; Volandes & Paasche-Orlow, 2007).

Nutbeam’s Health Literacy Model

In 2000 Nutbeam proposed a health literacy model that is now widely cited in the professional literature and useful in analyzing the literacy abilities required in various health situations. This model includes three sequential levels of health literacy. Level I, called functional literacy, refers to the ability to apply basic literacy skills to health-related materials, such as reading the label on a pill bottle. Functional literacy is the most limited level of health literacy, the type used in clinical settings where information is transmitted to patients. Patients who have poor functional health literacy will be unable to adequately follow directions for their care as described in written materials, such as appointment reminder cards and informational brochures. Limited functional health literacy is a major barrier to educating patients with chronic health conditions (Williams et al., 1998).

...Nutbeam proposed a health literacy model that is...useful in analyzing the literacy abilities required in various health situations. Level II, called interactive literacy, focuses on the development of advanced cognitive skills and the ability to operate in a social environment. It relies on a solid foundation of functional health literacy. At this level patients can evaluate a health message so as to interact appropriately with others in the environment. Patients will show “improved motivation and self confidence” (Nutbeam, 2000, p. 266). They may, for example, negotiate treatment with their doctor based on knowledge of their condition gained through reading self-help materials or express their understanding to peers in an online support group.

Level III, called critical literacy, builds on functional and interactive literacy. It includes analysis skills that allow individual and group empowerment that supports social action participation in health-related issues. In general, people with level III health literacy are able to “facilitate community development” (Nutbeam, 2000, p. 266). At this top level of health literacy, individuals are able to evaluate health issues, determine the challenges and advantages of each issue, recognize who benefits and who loses by adopting a given health-promotion strategy, argue for or against adoption, and offer advice to community leaders. Nutbeam’s (2000) health literacy model is a useful framework for exploring health literacy demands imposed by PHR software.

Level I: Functional Health Literacy and the Personal Health Records

Large icons, pictorial depictions, and ‘talking-touch’ screen options may facilitate use of the technology as long as these applications are understandable and usable. Basic reading and writing skills are essential to navigate the electronic environment of PHRs. Numeracy skills, which include arithmetic skills and higher-level concepts, such as probability and risks, are also necessary to understand and act upon recommendation given by providers (Apter et al., 2009). For PHRs to be useful to COPD patients, program tools and data must be presented in ways that enable them to understand and to act on the information contained in their record (Tang et al., 2006). As Hemming and Langille (2006) warn, “simple access to technology does not ensure understanding of the information” (p. S34). When developing PHR applications, vendors and providers need to be aware of the level of readability and numerical concepts embedded in instructions. Applications should make use of relevant examples and avoid using jargon that might decrease reading comprehension.

The care of COPD patients is multifaceted and requires patients to understand complex ideas. Patients need to not only access various sources of information about their condition but also effectively use the healthcare system. Although patients with inadequate health literacy may not be able to take advantage of all the benefits of PHRs, they may be able to maintain portions of their record after some instruction (Lober et al., 2006). Understanding and compliance may be increased through the use of both written and verbal communication because older adults generally learn better from visual presentations than auditory presentations (Constantinidou & Baker, 2002). Pictures, videos, and multimedia can facilitate an understanding of complex ideas as long as they don’t lead to cognitive overload (Baker et al., 2007). Large icons, pictorial depictions, and ‘talking-touch’ screen options may facilitate use of the technology as long as these applications are understandable and usable. Cognitive function, visual impairments, such as cataracts, and mobility limitations of the upper extremity need to be considered when preparing software applications for older adults, As Speros (2009) has noted, teaching strategies need to be tailored to accommodate the cognitive, physical, and psychological changes associated with aging.

Level II: Interactive Health Literacy and the Personal Health Records

...Internet links embedded in PHRs, although not considered a replacement for healthcare providers, can augment care. Interactive literacy involves more advanced cognitive and literacy skills along with social skills that are used to participate with others in everyday activities. These more advanced skills enable individuals to extract and apply information derived from various forms of communication, to improve personal capacity, and to act on advice from others (Nutbeam, 2000). An important component for the management of COPD patients is the ability to manage symptoms and learn coping strategies. Access to peer networks through online support groups can convey health information and coping strategies, thus assisting patients to develop self-management skills. Social networking sites, such as Facebook and Internet blogs, provide a forum in which they can support others and discuss strategies for self-management. Peer leaders, accessed through Internet links embedded in PHRs, although not considered a replacement for healthcare providers, can augment care. Peer leaders can serve as role models and assist patients to improve self-efficacy, gain confidence in working with providers, and more adequately navigate the healthcare system (Levin-Zamir & Peterburg, 2001).

Although Internet links embedded in a PHR can facilitate access to a plethora of health information, they may impose new challenges for patients. New literacy skills are required that will enable patients to work with technology, navigate the Internet, and judge the relevance and validity of information regarding appropriate and safe self-management information. Norman & Skinner (2006) have called this expanded set of skills ‘eHealth literacy,’ which is comprised of traditional (functional) literacy as well as health, computer information, science, and media literacies. Research has shown that accessing Web site can improve knowledge and have beneficial effects on health behaviour; however, low literacy levels can prohibit optimal Web access (Coulter & Ellins, 2007). Nurses are in an ideal position to assess patient health literacy levels and help individualize an electronic PHR to each patient’s literacy level.

Level III: Critical Health Literacy and Personal Health Records

...software needs validation through usability testing. Critical health literacy reflects cognitive skills that are directed toward supporting not only individual but also social action (Nutbeam, 2000). Health education targets improving individual and community capacity to support healthy lifestyle choices and use health services effectively.  Nutbeam (2008) noted that empowerment is attained through the development of interactive and critical health literacy skills. However, for patients to reach this level they must first build a strong foundation of functional literacy that is strengthened by a supportive and educated provider network. Successful and full use of PHRs is not a solitary proposition, but rather the result of collaborative interactions working to ensure that patients’ literacy levels match the technology being offered at both the individual and community levels. Nurses are uniquely positioned to assess patients’ health literacy levels and are invaluable members on an interdisciplinary team working to develop literacy-level-appropriate content for PHRs.

Unfortunately, there is a dearth of literature on the effectiveness of PHRs and none of the benefits have been well studied. Vocabulary, readability, numeracy, and data issues need further investigation; software needs validation through usability testing. We need to better understand how PHRs can meet the health information needs of patients and help providers to deliver care. Many questions regarding the effectiveness of using PHRs to support chronic disease remain unanswered. Priority areas for research include evaluation of the impact of electronic PHRs on clinical, safety, economic, and psychosocial outcomes. Studies comparing responses to alternative models of personal health records in diverse consumer groups and also ethnographic studies of usage by patients with different clinical and access needs will be of value.

Conclusion

Nurses are in an ideal position to assess patient health literacy levels and help individualize an electronic PHR to each patient’s literacy level. PHRs have the potential to support the self-management programs of COPD patients. Applications offer software decision-support tools; facilitate access to a wide variety of sources of information and community online networks; and, when integrated with providers, support collaboration and communication. Clinicians are encouraged to develop teams that include visual designers, health information technology experts, and librarians who will consider the specific needs of the population they serve (Egbert & Nanna, 2009). This is important because simply having access to self-management tools does not ensure effective usage of the tools. Health literacy is a critical consideration for the safe and appropriate use of PHRs that include self-management programs. There also needs to be a match between patients’ health literacy levels and the PHR software they are expected to use.

The authors of this article urge caution regarding the use of technology without first ensuring that patients have the basic, functional literacy skills that can be built upon to enhance knowledge and ultimately gain the critical literacy skills needed for empowerment. To do so would be putting our patients at unnecessary risk and inadvertently increasing health inequalities. Volandes & Paasche-Orlow (2007) have suggested that currently “we are in a creative area of exploration in health information technology” (p.8). While the risk of unequal access is real and challenges of new technologies need to be overcome, the opportunity is upon us to advance health education for patients, particularly those imposed with the burden of self-managing a chronic illness.

Author

Beverly Mitchell, BScN, MSN, RN
E-mail: bev.mitchell@vch.ca

Beverly Mitchell is a doctoral student at the University of Victoria, located in Victoria, British Columbia, Canada, in the Faculty of Nursing. She received her BScN from McMaster University in Hamilton, Ontario, Canada, and her MScN from the University of British Columbia in Vancouver, British Columbia, Canada. She is currently employed at the Provincial Services Health Authority in Vancouver, working in Informatics and Telehealth. Ms. Mitchell’s clinical and research interests include the use and impact of technology on patients and clinicians.    

Deborah L. Begoray, PhD
E-mail: dbegoray@uvic.ca

Dr. Begoray is a Professor of Education in Language and Literacy at the University of Victoria (Victoria, British Columbia, Canada). She does interdisciplinary research on health literacy with scholars from Nursing, Medicine, Health Education, Counseling Psychology, and Health Promotion and Medicine. She works, nationally and internationally, with colleagues in Britain and the United States as well as across Canada. She is a Visiting Scholar in Health Literacy at London South Bank University in London, United Kingdom, and is currently organizing an international seminar series on health literacy.

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© 2010 OJIN: The Online Journal of Issues in Nursing
Article published July 20, 2010


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