This chapter presents a patient-centered approach to the management of care of veterans who have chronic multisymptom illness (CMI). It discusses patient–clinician interactions with a focus on improving communication. It also considers how the new information and communication technologies could be harnessed to improve care.
The treatment of veterans for CMI requires a multipronged approach. A major determinant of success in practice behaviors is the training of clinicians, who can include physicians (primary care physicians and specialists), physician assistants, nurses, mental health therapists, and physical rehabilitation therapists, in the particulars of how patients who have CMI are best managed. Training (investment in human capital) of clinical teams has been found to be a critical factor in the adoption and maintenance of innovations (Smits et al., 2008). In many cases, physicians are unprepared for or not trained in managing the care of patients who have CMI, or the systems in which they practice do not enable them to address how to work with such patients. (Practice and systems issues are addressed in Chapter 7.) Although it is generally recognized that training physicians and other clinicians in caring for people who have CMI may matter, there have been few systematic studies, including randomized controlled trials (RCTs); however, there have been several qualitative or observational studies whose results offer some useful insights into the value of training clinicians about CMI.
Training of clinicians about the challenges faced by patients who are suffering from medically unexplained symptoms (referred to as CMI in this report) appears to have changed their attitudes toward the patients (Fazekas et al., 2009). In one study, although physicians recognized the challenges and suffering of veterans who had medically unexplained symptoms, they were wary of the difficulty in treating the patients (Aiarzaguena et al., 2009). Even participation in a “brief exposure,” such as a seminar, may make clinicians more receptive to and sympathetic toward patients who have medically unexplained symptoms, according to a study of medical students (Friedberg et al., 2008).
In one RCT, training of physicians in communication skills and in treating patients who have CMI resulted in greater patient satisfaction (Frostholm et al., 2005). Patients who had more uncertainty and negative emotions (feeling worried, depressed, helpless, afraid, or hopeless) about their health problems were less satisfied with the consultations with their physicians.
Evidence on the effectiveness of current methods of teaching clinicians how to communicate is sparse. In a recent comprehensive review of physician communication, Christianson et al. (2012) described the complexities of improving physician–patient communication. They documented that although training in communication skills is an important component of improving patient care, such training alone is insufficient. Additional factors need to be addressed, including
• Patient characteristics, such as sex, ethnicity, age, physical appearance, education or language and literacy, and the presence of a terminal illnesses or chronic condition (such as CMI).
• Practice characteristics, such as physical surroundings that are crowded and noisy, the availability of “decision aids” or electronic health records, and in-office laboratories and imaging equipment.
• Environmental characteristics, which may be financial (for example, fee-for-service reimbursement, pressure to see more patients in the practice day leading to reduced visit length, or increasing payment by overuse or misuse of procedures and laboratory studies) and the need to use evidence-based treatment guidelines, potentially creating time-management problems for physician practices (Ostbye et al., 2005).
Christianson et al. (2012) stated that “possible interventions to improve physician communication … typically focus exclusively on the role of physician characteristics and give relatively little attention to mediating factors related to practice setting or patient characteristics. By doing so, they risk … overlook[ing] potentially fruitful interventions to improve communication that could be directed at altering mediating factors.”
Clinician training involving a comprehensive approach that combines pharmacologic therapy with biopsychosocial, cognitive behavioral, and case-management skills training or that emphasizes specific reattribution training (see next paragraph) has been found to be effective in managing patients who have CMI. Studies that provided comprehensive training for clinicians tended to show substantial benefit in physical functioning and mental health in patients even after 6–24 months of follow-up. For example, training clinicians to use a multifaceted intervention combining appropriate medications based on symptoms, cognitive behavioral therapy (CBT), and a specific patient-centered method proved beneficial in several studies (Smith and Dwamena, 2007; Smith et al., 2003, 2006, 2009). Similarly, Margalit and El-Ad (2008) demonstrated decreased hospital days and emergency room visits at both the 1-year and 2-year points after CBT, medication, and other therapies were administered by clinicians with expertise in treating patients who have CMI. Improvement in physical functioning and mental health was observed in patients who have CMI 12 months after the use of effective case management plans developed by an expert group of clinicians (Pols and Battersby, 2008). Finally, a collaborative-care model with CBT and side-by-side psychiatric consultation with the primary care clinician showed improvement in the severity of symptoms and in social functioning and decreased health care use after 6 months (Van Der Feltz-Cornelis et al., 2006). In that study, the primary care clinicians were trained in case management and CBT.
Reattribution training involves skills in empathizing with patients regarding their physical complaints and helping them to connect their physical symptoms with their emotions and psychosocial circumstances. Studies based on reattribution training have had mixed results. There were mild decreases in physical symptoms and pain (Aiarzaguena et al., 2007; Larisch et al., 2004) and some improvement in patient satisfaction with physician–patient communication (Morriss et al., 2007). However, two studies that examined the impact of “the extended reattribution and management” model in which clinicians received training in biopsychosocial history taking and management strategies in addition to reattribution training showed no long-term benefits (Rosendal et al., 2007; Toft et al., 2010), although one of them (Toft et al., 2010) showed mild benefits of improved physical functioning at 3 months.
The effectiveness of another form of clinician training, consultation with a mental health professional with or without consultation letters, also has been studied. Consultation letters educate the referring clinician about the chronic nature of the symptoms and suggest treatment strategies for the care team to use that are based on frequency of follow-up visits and psychosocial models rather than high-cost testing and procedures. Consultations with mental health experts did not appear to be effective
on their own (Rasmussen et al., 2006; Schilte et al., 2001). Rasmussen et al. (2006) examined the benefits of a reflecting interview for their patients who had CMI. The patients were interviewed about their diagnosis, their condition, and optimal ways of treating for their symptoms. Although there were no differences in health scores (SF-12) between the treatment and control groups after 6 or 12 months, there were significant reductions in health care costs in the intervention group after 1 year. Similarly, Shilte et al. (2001) studied the impact of disclosure of emotionality in patients who had medically unexplained symptoms. Patients in the intervention group of this RCT were asked to disclose important events in their lives. They were psychiatrically screened and were asked to keep a diary of their thoughts, emotions, and physical complaints. There was no significant improvement in the physical or psychologic health of the intervention group after the 2-year study period.
The information acquired thus far regarding the perceptions and possible experiences of veterans who have multisymptom or other functional syndromes and are returning from deployment makes it evident that treatment must begin with establishing an effective patient–clinician relationship. That premise is supported by results of several studies that show that good communication skills and an effective patient–clinician relationship can lead to improved patient satisfaction, better disclosure of important information, greater adherence to treatment, reduced emotional distress, improved physiologic measures, and better overall clinical outcomes (Anderson et al., 2008; Frostholm et al., 2005; Hall et al., 2002; Roter and Hall, 1989, 1992; Roter et al., 1995). Conversely, ineffective communication skills and a poor patient–clinician relationship are associated with low patient satisfaction and even an increase in malpractice claims (Levinson et al., 1997).
The basic practices of any good clinician communication in patient encounters were thoroughly documented in what has been called the Kalamazoo Consensus Statement of 1999 (Makoul, 2001). They include allowing the patient to complete his or her “opening statement”; eliciting concerns and establishing a rapport with the patient; using a combination of open-ended and closed-ended questions to gather and clarify information and different listening techniques to solicit information; identifying and responding to the patient’s personal situation, beliefs, and values; using language that the patient can understand to explain diagnoses and treatment plans; checking for patient understanding; encouraging the patient to participate in decisions and exploring the patient’s willingness and ability to follow care plans; asking for other concerns that the patient might have;
and discussing follow-up activities expected of the patient before closing the visit (Makoul, 2001, p. 391).
Patient Perceptions Regarding the Patient–Clinician
Relationship and Chronic Multisymptom Illness
On the basis of clinical studies, patient presentations to the committee,1 and a social media analysis commissioned by the committee (Furey, 2012), the committee made several observations to be considered in developing recommendations to improve the relationship between clinicians and patients who have CMI:
• Many patients who have CMI do not believe that they are receiving proper care.
• Patients believe that clinicians focus on diagnosis and on treatment for symptoms rather than on seeking out the underlying condition. In one research study, clinicians did less exploration of symptoms and validation when seeing CMI patients than when seeing patients who had clear-cut symptoms, such as esophageal reflux disease (Epstein et al., 2006).
• Patients feel that their clinicians do not understand or believe their symptoms, and they desperately want to be believed. They fear that clinicians believe that “it’s all in your mind,” and they feel isolated almost as “medical orphans” (Nettleton et al., 2005). Although it is unlikely that clinicians have communicated such perspectives directly, there are sufficient patient commentaries to suggest that it is occurring indirectly either through faulty communication and nonverbal behaviors or through dialogue that communicates mixed messages or clinician uncertainty (olde Hartman et al., 2009).
• Patients do not feel that their clinicians fully consider the whole person or explore his or her life experience. They would like clinicians to understand the effects of CMI on work, social, and family life, understand the patient’s expectations and beliefs, and recognize the influence of ethnic or sociocultural norms. Because patients who have CMI may not directly state the full effects of their disorder, the clinician might tend to ignore or minimize their life experience and focus more clinically in dealing with the symptoms (Kappen and van Dulmen, 2008; Ring et al., 2004; Salmon et al., 2007).
1Comments were made to the committee during public sessions held on December 12, 2011, and February 29, 2012. The committee also received written comments from members of the public, which can be obtained by contacting the National Academies Public Access Records Office (see http://www8.nationalacademies.org/cp/projectview.aspx?key=49405).
• There appears to be a discrepancy between patients’ and their peers’ beliefs and their clinicians’ beliefs about the cause of and possible treatments for the condition. That gap in perceptions must be reconciled to improve the outcome. A patient’s beliefs can influence the severity of the symptoms and daily functioning (Hunt et al., 2004).
• Many patients are seeking alternative treatments because they are dissatisfied with the type of care received from their health care clinicians.
• Patients want to participate in decision making regarding options for their treatment. Health literacy may affect the transfer of information that enables decision making.
• Family members are affected by the multisymptom illness and need to be involved in the patient’s education and possibly in care decisions.
• Patients who feel uncertain about their illness and are involved negatively with their health problems (that is, worried, depressed, helpless, and hopeless) tend to be dissatisfied with their care, as the committee has seen in patients with CMI and their clinicians (Frostholm et al., 2005). However, patients are more satisfied with clinicians who are trained in good communication (Frostholm et al., 2005). That finding highlights the value of learning good communication techniques.
Factors Related to Good Patient–Clinician Interactions
The committee believes that an effective patient–clinician relationship is the foundation of treatment for CMI and is necessary if patients who have CMI are to derive maximum benefit from any specific treatment. Guidelines developed by expert clinicians and educators and established by consensus are used to teach clinicians good communication techniques (Chang and Drossman, 2002; Drossman, 1999; Fortin et al., 2012; Lipkin et al., 1995; Morgan and Engel, 1969; Roter and Hall, 1992). Those guidelines, along with the work of other researchers, provide the basis for the committee’s discussion below on improving the patient–clinician relationship.
Many of the strategies described below are similar to the concept of motivational interviewing (MI). MI is a therapeutic method that seeks to create a collaborative patient-centered form of communication to strengthen a patient’s motivation to change unhealthy behaviors and resistance to treatment. Although originally developed in psychiatry to treat alcohol and substance abuse, the strategy has been used for a variety of conditions, including dietary change, medication adherence, eating disorders, and management of chronic medical disorders. It has also been used in
medical settings, including primary care settings. It has never been tested in the Department of Veterans Affairs (VA) health system for CMI, but the concepts of MI can apply to clinicians working with patients who have CMI. They include fostering patient-centered care; creating a sense of collaboration through empathy, support, and shared decision making rather than promoting the clinician’s sense of “right”; enhancing rapport by using open-ended questions, well-timed affirmations, and skillful reflective statements; strengthening patient motivation toward behavioral changes that improve health; and avoiding confrontational interactions (Anstiss, 2009; Cole et al., 2011; Lundahl and Burke, 2009; Miller and Rose, 2009).
With regard to effective communication methods for CMI, one qualitative study evaluated the management methods of community-based physicians who were treating patients who had medically unexplained symptoms (Anderson et al., 2008). The strategies considered effective by both physicians and patients included exploring causes and symptoms with tests and referrals, attentive listening, validating complaints, demonstrating commitment to work with the patient over time (including allowing extended office visits and returning telephone calls), providing clear explanations of symptoms and management, and providing explanatory models of the linkage between psychosocial factors and physical symptoms. Strategies that conflicted with proper guidelines and about which physicians had concerns but used nevertheless include ordering potentially unnecessary diagnostic tests, scheduling patients on demand, and prescribing narcotics.
Some strategies for improving the physician–patient relationship have been studied and are of value to all clinicians (Roter and Hall, 1992). First, patient satisfaction is related to the patient’s perception of the clinician’s humaneness, technical competence, interest in psychosocial factors, and provision of relevant medical information, but too much focus on biomedical issues can have an adverse effect (Bertakis et al., 1991; Hall and Dornan, 1988). Second, some communication methods engage the patient more and ultimately improve clinical outcome, adherence to treatment, reductions in symptoms and pain medication, and shortened hospital stay. These methods include good eye contact, affirmative nods and gestures, a partner-like relationship, closer interpersonal distance, and a gentle tone of voice (Hall et al., 1995; Roter et al., 1987). Finally, clinicians who engage in good communication skills are more apt to like their patients and their work, and their patients are more satisfied (Hall et al., 2002).
Improving the Patient–Clinician Relationship
On the basis of the above observations, the committee offers below several recommendations that it believes will enhance communication and build an effective patient–clinician relationship. Many comments that clinicians
use routinely to reassure patients are not helpful for patients who have CMI. For example, “Don’t worry, it’s nothing serious” or “Your problem is due to stress” will probably have negative consequences for patients who feel that they are not believed or even that they are stigmatized by their disorder (Drossman, 2004); patients may view them as diminishing what they see as real. The clinician needs to accept the reality of the patient’s perception as serious and clarify that the symptoms are not due to a psychiatric disorder but rather that the patient has a medical condition that can be psychologically distressing. A comment like “I’d like to order a few tests to be sure there is nothing wrong, but I believe they’ll be normal” communicates a mixed message that can be viewed as placating the patient or as indicating that the clinician is practicing defensive medicine (Drossman, 1995). Such comments are not uncommon, because clinicians with a high level of uncertainty are at risk for dealing with CMI by ordering tests more than by making an effort to understand the whole context of the patient’s illness (Kappen and van Dulmen, 2008).
An effective patient–clinician relationship occurs through proper interview technique. It is patient-centered, that is, based on creating an environment that encourages the patient to give personal high-quality information, both medical and psychosocial. It occurs through both verbal statements and the behavioral context in which they are made and in relation to facilitative nonverbal behaviors that create a comfortable environment and help to create a partnership of care. The committee recommends several methods and techniques that will enhance the quality of the communication (Chang and Drossman, 2002; Drossman, 1999; Lipkin et al., 1995; Morgan and Engel, 1969; Roter and Hall, 1992).
• Listen actively. Clinical data are obtained through an active process of listening, observing, and facilitating. Questions should evolve from what the patient says rather than strictly from a predetermined agenda. If one is uncertain of the patient’s response, it helps to restate the information and ask for clarification, and this reaffirms the clinician’s commitment to understand.
• Accept the reality of the disorder. Many clinicians have difficulty in accepting CMI as a bona fide disorder because there is no biomarker or specific diagnostic test. The difficulty is common in clinicians who work with functional somatic syndromes, such as irritable bowel syndrome, fibromyalgia, and chronic fatigue syndrome. It drives the frequent ordering of tests and the communication of uncertainty. Patients who have CMI desperately want to be believed. The solution is to accept the symptoms as real and to focus on a commitment to work with the patient and his or her illness by listening to understand the patient’s illness experience and communicating support.
• Stay attuned to questioning style and nonverbal messages. Often, it is not what the clinician says but how he or she says it that makes the difference. Table 6-1 gives examples of several behaviors that either facilitate or inhibit the acquisition of data from the patient. In general, the clinician wants to communicate nonjudgmental interest in an environment of comfort, support, and security. Appendix C contains examples of effective and ineffective patient–clinician discussions.
• Elicit the patient’s illness schema. To negotiate treatment properly, the clinician must identify how the patient understands the illness. In doing so, the clinician can begin a dialogue that will lead to a mutually specified set of goals. For example, even with years of CMI, patients may expect the clinician to diagnose a specific disease and to offer a cure. But the clinician sees it as a chronic disorder that requires continuing management. Those differences must be reconciled if the patient is to accept treatment and cope with the disorder. Several questions can be asked routinely to understand the patient’s illness schema:
— “What brought you here today?”
— “What do you think you have?”
— “What worries or concerns do you have?”
— “What are your thoughts about what I can do to help?”
• Offer empathy. The clinician provides empathy by demonstrating an understanding of the patient’s pain and distress while maintaining an objective and observant stance. An empathic statement would be, “I can see how difficult it has been for you to manage with all these symptoms” or “I can see how much this has affected your life.” Providing empathy improves patient satisfaction and adherence to treatment.
• Validate the patient’s feelings. When patients disclose personal information, they may experience shame or embarrassment. Therefore, the clinician needs to validate the patient’s feelings rather than make personal judgments or close the communication with a quick reassurance or solution (Roter and Hall, 1992). A validating statement to a patient who is feeling stigmatized by others who say that his or her problem is stress-related could be, for example, “I can see you are frustrated when people say that this is due to stress and you know it’s real.” That type of statement not only validates the patient’s feelings but can open the door to further discussion of how the condition can itself be stressful.
• Be aware of personal thoughts and feelings. Clinicians can become frustrated when working with patients who have CMI because, unlike better defined medical conditions, CMI lacks a precise diagnostic
|Clinical environment||Private, comfortable||Noisy, physical barriers|
|Eye contact||Frequent||Infrequent or constant|
|Body posture||Direct, open, relaxed||Body turned, arms folded|
|Head-nodding||Helpful if well timed||Infrequent, excessive|
|Body proximity||Close enough to touch||Too close or too distant|
|Facial expression||Interest, empathy, understanding||Preoccupation, boredom, disapproval|
|Touching||Helpful when used to communicate empathy||Insincere if not appropriate or properly timed|
|Question forms||Open-ended to generate hypotheses||Rigid or stereotyped style|
|Closed-ended to test hypotheses||Multiple choice or leading questions (“You didn’t … ?”)|
|Use of patient’s words||Use of unfamiliar words|
|Fewer questions and interruptions||More|
|Follows lead of patient’s earlier responses||Follows preset agenda or style|
|Use of a narrative thread||Unorganized questioning|
|Appropriate use of silence||Frequent interruptions|
|Appropriate reassurance||Premature or unwarranted reassurance|
|Eliciting pertinent psychosocial data in a sensitive and skillful manner||Ignoring psychosocial data or using “probes”|
and treatment strategy. Awareness of that limitation can help to minimize reactive or negative behaviors by the clinician. Patients experience physicians’ frustration and even rejection. The experience may lead some patients to interact in ways that are perceived as overcautious and “resistant,” demanding, or even adversarial. Clinicians may respond defensively or overreact by becoming angry, doing unneeded tests, or overmedicating. Patients’ responses can limit the clinician’s interest or ability to understand the psychosocial context of the illness. The clinician needs to understand such patient behaviors as responses to deficits in the health care system in providing proper care rather than as patient problems. The clinician must also “tune in” to personal thoughts and feelings (for example, “What is it about this patient’s behavior that makes me feel frustrated?”) to prevent countertherapeutic responses.
• Be aware of biases or stereotyping that might lead to unequal treatment. Bias and stereotyping, although not necessarily conscious, may lead to ethnic disparities and unequal treatment. Such behaviors are more likely to occur in situations where there are clinical uncertainties and time pressures, which often occur when clinicians see patients who have CMI (IOM, 2003).
• Educate. Education should be an iterative process. It involves several steps: eliciting the patient’s understanding, addressing misunderstandings, providing information that is consistent with the patient’s frame of reference or knowledge base, and checking the patient’s understanding of what was discussed. Particularly for patients who have CMI, it is important to provide clear explanations of symptoms and treatments in the context of explanatory models that are understandable, are related to treatment, and are consistent with the patient’s beliefs. For example, the clinician can explain that because CMI produces many symptoms related to different organ symptoms, the problem (yet to be fully determined) may reside in oversensitivity of nerves or in the brain’s failure to “turn down” signals from the nerves. That plausible hypothesis can open the door, for example, to the use of antidepressants as a central analgesic treatment.
• Reassure. Patients who have CMI fear serious disease and have negative thoughts and feelings about their condition—helplessness, a lack of control. But reassurance needs to be realistic because a clear understanding of CMI is not yet established. The approach is to identify the patient’s worries and concerns, acknowledge or validate them, respond to specific concerns, and avoid “false” reassurances (for example, “Don’t worry, everything’s fine”), particularly before an initial medical evaluation.
• Negotiate. The patient and the clinician must agree on diagnostic and treatment options. The clinician should ask about the patient’s experience and about understanding of and interests in various treatments and then provide choices (rather than directives) that are consistent with the patient’s beliefs. Negotiation is particularly important in some situations, such as in recommending an antidepressant (which may be viewed as a “psychiatric” drug rather than a centrally acting analgesic) or in referring the patient to a psychologist for posttraumatic stress disorder or for treatment of other psychologic symptoms.
• Help the patient to take responsibility. Patients need to participate actively in their health care, and this can be communicated in several ways. For example, rather than asking the patient, “How are your symptoms today?” one might say, “How are you managing with your symptoms?” The former question tends to leave the clinician with responsibility for dealing with the pain, but the latter acknowledges the patient’s role. Another method includes offering any of several treatment approaches and discussing their risks and benefits so that the patient can make the choice.
• Establish boundaries. In the care of some patients, “boundaries” regarding frequent telephone calls, unexpected visits, a tendency toward lengthy visits, or unrealistic expectations for care need to be addressed. The task is to present the clinician’s needs in a way that is not perceived by the patient as rejecting or belittling. For example, setting limits on time can be accomplished by scheduling brief but regular appointments of fixed duration rather than attempting to extend the time of a particular visit.
• Provide continuity of care. Many patients who have CMI feel isolated from the health care system and even from other peers who have medical conditions that are easier to understand. It is valuable to make it clear from the outset that the commitment to care is long-term so that what may be a chronic condition can be managed. Making the commitment to work with the patient avoids patient fears of abandonment.
Additional resources for clinicians to learn more about improving their communication skills are listed in Box 6-1.
Improving communication skills and the patient–clinician interaction is a process that takes more time than is needed for learning content. It also requires self-awareness and feedback from others through training sessions to make such behavioral changes. Clinicians who are interested in acquiring greater skills in this regard should review Web-based video learning programs and attend training courses. Some learning resources are listed below.
DocCom. This is a highly professional self-instruction program that covers basic components of communication and methods to build the patient–clinician relationship and includes numerous models to permit the clinician to address particularly difficult clinical encounters, such as addressing substance abuse, the dying patient, and communication difficulties. This program is one of the best developed and most popular programs designed for teaching medical students, residents, and practitioners. http://webcampus.drexelmed.edu/doccom
American Academy on Communication in Healthcare (AACH). The AACH is one of the oldest organizations composed of an interdisciplinary group of medical educators and clinicians that share a common interest in patient–clinician communication and relationships and in the psychosocial aspects of health care. The AACH provides workshops and courses for clinicians and educators individually or in groups. It maintains an extensive bibliography of articles on patient–clinician communication and a library of educational videos. It focuses on enhancing communication to improve clinical outcomes, lowering risk of malpractice, negotiating and collaborating with patients, mediating challenging patient– clinician encounters, and dealing with uncertainty in diagnosis and treatment. Fellowships are available for advanced training and leadership development. http://www.aachonline.org/
Institute for Healthcare Communication (formerly the Bayer Institute). This organization offers a variety of workshops to help clinicians to develop and hone their communication skills. It also offers books, videos, and practical guides on how to improve communication. Training sessions are available for individuals, in-house consulting for organizations, and “Train the Trainer” programs for advance achievement. http://www.healthcarecomm.org/
NOTE: The resources described here are examples of the types of programs that are available to health care practitioners who are interested in improving their communication skills. They do not constitute an exhaustive list of communication improvement programs.
In addition to patient–clinician encounters, patients’ perceptions of illness and of how they are being handled by their clinicians is to a large extent influenced by their interactions with peers, family members, and other important people in their lives. Moreover, patients spend more time outside the encounter and the medical system, and this suggests that there should be other ways to engage patients. Conversations among veterans in social media show veterans’ frustration and dissatisfaction with how their illness is being handled but also how conversations outside the medical encounter are probably shaping the perceptions of the veterans (Furey, 2012).
The development of information and communication technologies provides some outstanding opportunities to engage patients and their families more actively in symptom management with a potential for improvement in patient satisfaction and health outcomes. The increasing penetration of Internet use, increasing use of social media, deployment of electronic health records and medical informatics systems, and integration of different digital domains—in short, the emergence of a “cyber-infrastructure”— could, in theory, provide ideal platforms for bringing patients into the loop and encouraging more participatory decision making for those who have CMI (Smits et al., 2008; Viswanath, 2011). Moreover, VA has advanced electronic health records and health informatics architecture that could be exploited to disseminate new models for managing CMI and encouraging patient participation.
Although information and communication technologies provide an important opening for engaging patients, different organizations and groups have different capacity to generate, process, and use information, and different people, such as patients and physicians, have different capacity to access information (Viswanath, 2006). Such communication inequalities have been extensively documented, especially among patients (Cooper and Roter, 2003). For example, patients face major barriers in seeking information outside the medical encounter, and this limits what they learn to information from their physicians (Galarce et al., 2011; Ramanadhan and Viswanath, 2006).
Social class, race, and ethnicity could potentially affect patient–clinician communication, influencing the amount of talk in an encounter, the amount of informative talk, emotional support during the encounter, and question-asking. Possible consequences of this influence are fewer participatory visits, shorter visits, less positive affect, lower satisfaction, lower recall of information, and lower compliance (Cooper and Roter, 2003).
From a patient perspective, the empirical data on access to and use of new information and communication technologies are mixed. National data have repeatedly documented substantial inequalities in accessing and using such technologies as the Internet: Those who have more schooling, higher income, and white-collar occupations enjoy greater access and use than those who have lower incomes, less schooling, and manual occupations (Blake et al., 2011; Kontos et al., 2010; Viswanath, 2011; Viswanath and Ackerson, 2011). VA’s deployment of patient portals and health records and its relatively advanced deployment of health information technology warrant an examination of how veterans use the Internet. There are few data on the issue. One national study that oversampled veterans showed that only half of veterans used the Internet and that about 29% of all veterans who responded to the survey used it for health (McInnes et al., 2010). In contrast, national data showed that 61% of those who access the Internet have accessed health information (Fox and Jones, 2009).
Although the “digital divide” is real and persistent, developments in information and communication technologies and new consumer informatics platforms offer considerable opportunity to reach out to veterans and engage them and to build a collaborative platform between VA and veterans. A key platform is social media. Social media are a product of the larger Web 2.0 developments that, unlike the prior version of the Web, engage users more actively and encourage interactivity. Social media facilitate participation through user-generated content, an approach that is more participatory. Social media platforms are varied and include those which encourage collaboration, such as Wikipedia; blogs and microblogs, such as Twitter; social networking, such as Facebook; content communities, such as YouTube; games; and virtual social worlds. The penetration of social media has been fast and furious, and they have overtaken the growth of other platforms on the Web. Almost 66% of online adults use social media platforms, according to the Pew Internet & American Life Project, and much of the use is focused on staying in touch with friends and family members (Pew Research Center, 2012).
More germane to the present discussion is the fact that, unlike the digital divide that is characterized by lower online access and use by those in a lower socioeconomic groups, social networking use is not patterned by class, race, or ethnicity (see Table 6-2). In fact, minority groups are more likely to use social media, and income and schooling matter much less (Kontos et al., 2010; Pew Research Center, 2012). Age is one important determinant: older groups, particularly those over 65 years old, are much less likely than younger groups to use social media.
In short, the participatory and engaging nature of social media provides one optimal platform for VA to use to reach and engage veterans who have CMI. Many veterans are already active on social media (Furey, 2012).
|Characteristic||Fraction of Internet Users,a %|
|Race and Ethnicity|
Hispanic (English- and Spanish-speaking)
Less than $30,000
Less than high school
High school graduate
NOTES: Table shows percentage of Internet users in each group who use social-networking sites. An asterisk indicates statistically significant differences between rows. Extra asterisks mean differences with all rows with lower figures within each category.
aInternet users make up 66% of US population.
SOURCE: Reproduced with permission from Pew Research Center’s Internet & American Life Project.
However, the grassroots and participatory approach of social media warrants a shift away from the “command and control” approach that institutions have traditionally taken. To achieve that shift, VA should develop more active social media strategies to work with veterans who have CMI.
There are opportunities for VA to disseminate new guidelines and to change clinician behaviors as well as engage patients. There are no simple or precise models of dissemination, but the lessons from earlier experiences of dissemination and implementation offer some useful pointers. Diffusion (a passive process that involves unplanned spread of evidence-based information with little attention to specificity in defining the target audience or to customization of the information itself) and dissemination (a purposive flow of customized information toward a well-defined target audience) of guidelines and innovations make clinicians aware of them and prepared to
adopt them. Diffusion and dissemination by themselves are unlikely to lead to behavior change. Behavior change requires more active implementation strategies that focus at three levels. At the system level, there is a need for the development and deployment of decision-support systems that are user-friendly and customized to local needs and that find support in local organizations. A greater flexibility in modifying systems and procedures to support adoption of new CMI guidelines, support from management, and constant monitoring and evaluation in the form of continuous quality improvement are key determinants in the adoption of new guidelines to treat for CMI. Active communication and marketing will help to facilitate organizational changes and to ease barriers. A continuous quality-improvement approach will also ensure constant feedback to inform the implementation of and changes in CMI treatment guidelines.
As discussed in more depth in Chapter 7, at the clinician and network level, local champions and peer networks offer a supportive setting for learning skills informally, provide role models, and create the right environment for adopting new guidelines. Investment in the training of and incentives for clinicians and care teams will facilitate adoption and ease barriers.
In addition to “push” factors that actively disseminate education and information, working with patients will ensure that “pull” factors that involve patient engagement impel the adoption. Patient engagement can be engendered by taking advantage of social media platforms and combining consumer informatics technologies with VA’s fast-developing health-informatics platforms.
Finally, it is important to remind ourselves that communication inequalities could potentially deter patients from taking full advantage of new information and communication technologies, so efforts should be made to ensure that veterans who do not access the Internet can be reached in other ways.
Aiarzaguena, J. M., G. Grandes, I. Gaminde, A. Salazar, A. Sanchez, and J. Arino. 2007. A randomized controlled clinical trial of a psychosocial and communication intervention carried out by GPS for patients with medically unexplained symptoms. Psychological Medicine 37(2):283-294.
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