Cancer Communication and Informatics Research Across the Cancer Continuum Bradford W. Hesse Ellen Beckjord Lila J. Finney Rutten Angela Fagerlin Linda D. Cameron

Over the past decade, dramatic changes brought about by a rapid diffusion o f Internet technologies, cellular tele­ phones, mobile devices, personal digital assistants, elec­ tronic health records, and data visualization have helped to create a revolution in health communication. To under­ stand the implications o f this communication revolution for cancer care, the National Cancer Institute launched an ambitious set o f research priorities under its “extraordi­ nary opportunities” program. We present an overview of some o f the relevant behavioral research being conducted within the perspective o f this extraordinary opportunity in cancer communication research. We begin by tracing the implications o f this research fo r behavioral scientists across the continuum o f cancer care from primary preven­ tion (e.g., tobacco control, diet, exercise, sun protection, and immunization against human papilloma virus), to sec­ ondary prevention (e.g., screening fo r polyps, lesions, and early stage neoplasms), to diagnosis and treatment, post­ treatment survivorship, and end o f life. Along each point o f the continuum, we describe a natural evolution o f knowl­ edge from studies on the traditional role o f media to research on the changing role o f new media and informat­ ics, and we carefully highlight the role that psychological research has played in improving communication- and health-related outcomes along the way. We conclude with an appeal to psychologists o f many different backgrounds to join with biomedical researchers, engineers, clinical practitioners, and others to accelerate progress against cancer. Keywords: health communication, informatics, psycho­ oncology, cancer

National Cancer Institute, Bethesda, Maryland University o f Pittsburgh Mayo Clinic, Rochester, Minnesota University o f Michigan and VA Center fo r Clinical Management Research, Ann Arbor, Michigan University o f California, Merced

current biomedical knowledge to “accelerat[e] successes against cancer” today (Cancer Center Directors Working Group, 2006).

Why Study Communication? Health systems researchers have often attributed malfunc­ tioning within medical systems to the miscommunications that occur between health care professionals and between health care teams and their respective patients (Institute of Medicine, 2000). In cancer, where primary and secondary prevention are important aspects of disease control, com­ munication discontinuities can cause disruptions across the entire spectrum of the disease. For example, errors in public health communication can lead to personal confu­ sion for the public over which recommendations to follow in preventing the onset of neoplastic disease (Beckjord, Finney Rutten, Arora, Moser, & Hesse, 2008); lapses in communication at the point of early detection can result in missed opportunities in secondary prevention (Zapka et al., 2004); discontinuities in communication after diagnosis may result in deleterious effects during treatment (Mazor et al., 2012); while the absence of coordinated care planning can lead to devastating consequences from recurrence, side effects, or end-of-life experiences (Institute of Medicine & National Research Council, 2006). Editor’s note. This article is one of 13 in the “Cancer and Psychology” special issue of the American Psychologist (February-March 2015). Paige Green McDonald, Jerry Suls, and Russell Glasgow provided the scholarly lead for the special issue.

Authors’ note. Bradford W. Hesse, Health Communication and Infor­ matics Research Branch, National Cancer Institute, Bethesda, Maryland; sychological science has much to offer in shaping Ellen Beckjord, Biobehavioral Medicine in Oncology Program, Univer­ the communication pathways that undergird the sity of Pittsburgh; Lila J. Finney Rutten, Population Health Science Program, Department of Health Sciences Research, Mayo Clinic, Roch­ delivery of evidence-based oncology care across ester, Minnesota; Angela Fagerlin, Center for Bioethics and Social Sci­ the disease continuum (Miller, Bowen, Croyle, & Rowland, ences in Medicine, University of Michigan, and VA Center for Clinical 2009). As expressed by the directors of the National Cancer Management Research, Ann Arbor, Michigan; Linda D. Cameron, Health Institute’s Comprehensive Cancer Centers, understanding Communications and Interventions Lab and Department of Psychology, University of California, Merced. how to improve cancer communications— both in the pub­ Correspondence concerning this article should be addressed to Brad­ lic health sense of raising awareness for cancer control and ford W. Hesse, Health Communication and Informatics Research Branch, in the health systems sense of improving patient out­ National Cancer Institute, 9609 Medical Center Drive, Bethesda, MD comes—will be a necessary precondition for leveraging 20892-7365. E-mail: [email protected]

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In the public domain http://dx.doi.org/10.1037/a0036852

cer communications . . . [and] to provide leadership in the cancer communications arena. (National Cancer Institute, 1999, pp. 69-73) P urpose o f the R e v ie w

B ra d fo rd W . Hesse

More important, improvements in the communication process—that is, making it possible to apply what is al­ ready known about cancer across the patient’s disease trajectory— can save lives (Baron et al., 2008; U.S. Pre­ ventive Services Task Force, 2010), decrease suffering (Epstein & Street, 2007), and reduce overall costs in an overburdened care system (Khoury, Gwinn, Glasgow, & Kramer, 2012). Indeed, by one estimate, even a 1% reduc­ tion in cancer-related costs would be worth over 5400 billion in savings to the nation’s bottom line (Cancer Cen­ ter Directors Working Group, 2006). A n E x tr a o rd in a r y O p p o rtu n ity

The challenge of health communication is figuring out how to give individuals the information they need at the time they need it in order to make the best decisions possible for their health. This objective may appear impos­ sible to achieve in a mass media environment in which single messages must take on the weight of reaching all people with equal potency. Fortunately, the communication environment has undergone unprecedented change over the past 20 years, bringing the promise of enhanced capacity to cancer communicators (Viswanath, 2005). The National Cancer Institute responded to a rapid expansion in technol­ ogy capabilities by setting aside resources under its “ex­ traordinary opportunities” program to focus the scientific community on the new possibilities for reducing the cancer burden through advances in communication technology. A description in the institute’s budget presented to the Pres­ ident and Congress explained it this way: We are in the midst of a communications revolution unparalleled since Gutenberg introduced movable type to the Western world . . . by investing now, we will seize a crucial opportunity to shape the emerging national information infrastructure to improve can­

February-March 2015 • American Psychologist

In this review, we combine the insights of psychological studies across multiple perspectives and multiple modali­ ties within the changing information landscape to inform the ways in which communication research in psychology can be targeted to improve outcomes across the full con­ tinuum of cancer control and care. The cancer continuum, as used in this article, refers to the full spectrum of inter­ vention opportunities following the pathogenesis of cancer in its prototypical case. It includes opportunities for pre­ venting the occurrence of some cancers altogether (primary prevention), for detecting neoplastic processes early enough to afford prophylactic attention or minimal treat­ ment (secondary prevention), for diagnosing and treating the disease process, for supporting cancer survivors throughout their lives, and for preserving autonomy and enhancing decision making at the end of life.

Primary Prevention The goal of primary prevention in cancer control is to reduce exposure to the carcinogenic agents that are known to promote malignant tumor growth and to encourage healthy living as a way of reducing the influence of epige­ netic, metabolic distress. For example, when the U.S. Sur­ geon General released a report in 1964 declaring a link between tobacco smoke and cancer, social scientists worked with policymakers and public health organizations to undo the effects of millions of dollars spent on cigarette advertising by the tobacco industry. As a result, along with a number of other policy-related and dissemination-ori­ ented activities, the number of smokers in the United States began to decline during the 1970s and 1980s. In 1993, after a full century of unabated increase, the age-adjusted rate of deaths attributable to cancer began to decline. Chief among those were deaths from lung and bronchus cancer, both of which were sequelae of reduced exposure to tobacco smoke (American Cancer Society, 2012). The Role o f P sychological Research

Not too much time passed before those who were studying the effects of cigarette advertising began untangling the psychological consequences of messages and advertising campaigns used by the tobacco industry. Content analyses revealed that tobacco advertisements appealed directly to adolescents’ need for popularity (Evans, Farkas, Gilpin, Berry, & Pierce, 1995) and peer acceptance (Chassin, Presson, Sherman, & Edwards, 1991), cultivated perceptions of smoking as being especially masculine or feminine (Bar­ ton, Chassin, Presson, & Sherman, 1982), encouraged a perceptual link between rebelliousness and smoking (Chas­ sin, Presson, Sherman, & Margolis, 1988), promoted a sense of thrill seeking (Evans et al., 1995), and enhanced beliefs that smoking could relieve distress from daily pres­ sures (Romer & Jamieson, 2001). Each of these psycho­ logical dimensions has been shown to differentiate between 199

ducted an experiment in which participants received infor­ mation about their risk of colon cancer (based on a hypo­ thetical genetic test). This “risk” information was sent with or without accompanying “action” information about how to reduce participants’ risk (by adopting a low-fat diet). Results suggested that the provision of information on colon cancer risk with action information on how to reduce that risk enhanced perceptions of efficacy and beliefs in the link between the behavior (eating a low-fat diet) and the outcome (reduced risk of colon cancer) (Cameron, Marteau, Brown, Klein, & Sherman, 2012). N e w M e d i a a n d In fo r m a tic s

smokers and nonsmokers among young adults (Nat onal Cancer Institute, 2008). The public health response has largely worked to undo the effects of these advertising campaigns, e ther by pass­ ing regulatory restrictions to block advertising to miners or by using behavioral evidence to improve public health messages. As an example of the latter approach, the Amer­ ican Legacy Foundation’s “Truth” campaign used graphic images of body bags laid in front of a shadewv corporate headquarters in a telev ision spot crafted to make the alarm­ ing point that “ 1200 people are killed by smoking every day.” The advertisement took advantage of high “message sensation value” techniques (e.g., rapid, attention-grabbing camera cuts) to appeal in a dramatic way to young aeults’ sense of rebellion against corporate manipulaiion (Richard­ son, Green, Xiao, Sokol, & Vallone, 2010). Moreover, it took direct advantage of predictions from the elaboration likelihood model (Petty & Cacioppo, 1985) suggesting that low-involved adolescents would be more likely to yield to persuasive techniques channeled through peripheral, emo­ tive pathways than through central, highly cognitive path­ ways (Flynn, Worden, Bunn, Connolly, & Dorwaldt, 2011). The campaign stood in contrast to the tobacco companies’ own judicially mandated public service web­ site, which used the tagline “Think, Don’t Smoke.” Re­ search ultimately showed a rebound effect for the “Tnink, Don’t Smoke” campaign out showed a reduction in smok­ ing behaviors for the “Truth” campaign (Farrelly et al., 2002). Other efforts have been under way to improve the links between an increased awareness of risk, as mignt be promoted through mass advertising campaigns, and the specific actions needed to reduce that risk in the population over time. Cameron and her colleagues, for example, con­ 200

Once the World Wide Web began to diffuse as a source for information seekers, communication scientists began turning their attention to the distinct capacities of “eHealth” applications to serve prevention goals. For example, a number of effective applications have suc­ cessfully used message tailoring techniques to help con­ sumers quit smoking, lose weight, exercise more, and avoid overexposure from the sun (e.g., Noar & Har­ rington, 2012). Many of these applications use the in­ teractive capacities of online computer environments to mimic the efficacious components of motivational inter­ viewing techniques (Resnicow et ah, 2002) while con­ serving costs by reserving in-person counseling for those who need special interpersonal attention. Neurological studies using functional magnetic resonance imaging (fMRI) have revealed that the tailored communications employed by many of these online tools appear to be associated with activation of the rostral medial prefron­ tal cortex (rMPFC), an area that has previously been associated with self-referential information processing (i.e., processing information about the self). Activation of the rMPFC may account for the sustained influence of highly tailored Web applications (Chua et ah, 2011). The movement toward mobile computing platforms through smart phones, personal digital assistants, and tablet computers has triggered an avalanche of behavioral appli­ cations under the rubric of “mHealth.” Many of the mHealth interventions work by providing individuals with quantified feedback relevant to their actions in achieving a set of specified health-related goals. Personal odometers can inform self-regulation processes as individuals use quantitative biofeedback to adjust their walking habits and increase their physical activity, while smart phone “apps” can take advantage of photo-sharing capabilities, geo­ graphic positioning systems (GPSs), and interpersonal messaging capacities to orient health seekers toward healthy environments and local resources (Atienza & Pat­ rick, 2011; Intille, Lester, Sallis, & Duncan, 2012). “Con­ text-aware” mobile applications can serve to nudge healthy behaviors in settings or at times that suggest an individual is at particularly high risk for violating a health behavior goal by deploying gentle reminders or warnings in real time (Burns et al., 2011; Gustafson et al., 2011; Heron & Smyth, 2010; Krause, Smailagic, & Siewiorek, 2006). February-March 2015 • American Psychologist

new area of behavioral change intervention (Riley et ah, 2011).

Another, particularly knotty problem in preventive communication lies in undoing the myths circulated rapidly and virally through online networks, such as the misinfor­ mation that vaccination for human papilloma virus (HPV) causes autism. This type of misinformation can be espe­ cially resistant to corrective statements because the errone­ ous explanation may be firmly ensconced within a biasing worldview; the misinformation may be simpler to remem­ ber than a corrective explanation; the mythic explanation may be more cognitively attractive than the corrected in­ formation; or audiences may perceive threats to personal autonomy when others are correcting their erroneous be­ liefs (Lewandowsky, Ecker, Seifert, Schwarz, & Cook, 2012). Ongoing research is needed to identify the best methods for issuing corrective statements for this type of misinformation that can serve to change the national con­ versation without precipitating an unanticipated rebound or sense of reactance.

Lila J. Finney Rutten

E m e r g in g O p p o r t u n it ie s

As the communication environment continues to change, careful vigilance will be needed to ensure :hat laboratorytested applications can scale up into real-wcrld settings and that the proliferation of these new approaches adheres to evidentiary guidelines. In a review of 14 behavioral change interventions delivered through mobile telephone shortmessage-service (SMS) technologies, Fjeldsoe and col­ leagues observed that 13 of tie 14 studies revealed positive behavioral change outcomes at least in the short term. In a methodological critique of the literature, these authors con­ cluded that further research would be needed tc evaluate the long-term, broad diffusion cf influence from these types of technologies on long-lasiing behavioral outcomes (Fjeldsoe, Marshall, & Miller, 2009). In a parallel review, Abrons, Padmanabhan, Thaweethai, and Phillips (2011) observed that among the high number of smoking cessation a ops diffusing among mobile device platforms, only 11.3% showed strong adherence to evidentiary guidelines for behavior chang3. Few, if any, provided links to existing programs for supplementing their quit attempts with approved medications or professional counseling. Only 4.3% of apps provided links to a Quitline (Abroms et ah, 2011). These researchers cautioned that the rapid proliferation of ineffective consumer apps may cre­ ate a backlash against using eHealth applications to im­ prove health and may squancer the opportunity afforded by the new ecosystem. Riley and colleagues observed that current theories and methods in psychology may not yet be “up to the task” of taking on the evaluation of these rapidly proliferating health informaiion technologies. New, more rapid, more nimble, and more quantitatively sophisticated approaches may be needed to guide development in this February-March 2015 • American Psychologist

Secondary Prevention Another significant point of advancement in efforts to control cancer comes through the development of technol­ ogies to screen for precancerous conditions or asymptom­ atic neoplasms early in their growth so as to prevent these conditions from developing into fatal, metastatic disease. The communication challenges around screening for dis­ ease can be especially challenging (Croyle, 1995). Uncov­ ering a suspicious finding on a mammogram can trigger a cascade of anxiety-provoking thoughts about being diag­ nosed with a malignant tumor (Miles, Waller, & Wardle, 2009). The days spent waiting for confirmation or disconfirmation can seem like months, and even when a cancer diagnosis is ruled out, the residual anxieties can linger persistently (Lerman & Rimer, 1995). Convincing the pub­ lic to undergo these risks, and even to break the taboo of talking about cancer, can be challenging and will require a different angle than that used when encouraging people to stop smoking, to exercise, or to eat better (Rothman & Salovey, 1997). The goal of cancer communication is to extend the benefits of evidence-based screening equitably to all those who can benefit while engaging in a shared decision-making process that conforms to personal patient values and that attends to psychological repercussions. T h e R o le o f P s y c h o lo g ic a l R e s e a r c h

In tackling the issue of secondary prevention, communica­ tion scientists have focused on both the attributes of mes­ sage content as well as source and channel. One particular challenge in communicating about cancer screening is to convince audiences that the risk of being diagnosed with a late-stage fatal cancer will outweigh the anxiety associated with uncovering a potentially treatable diagnosis. To aid in the appropriate framing of a screening message, research­ ers turned to the predictions of prospect theory (Kahneman, 2003; Tversky & Kahneman, 1981) from the decision sciences. According to the theory, “losses loom large” as audiences review the prospects associated with alternative 201

Angela Fagerlin

courses of action. Messages that would make those losses highly salient should be effective in convincing people to undergo the minor risk and discomfort of undergoing a screening procedure with the prospect of avoiding the larger negative consequence associated with not being screened. Through a series of studies, psychologists dem­ onstrated the efficacv of those “loss-framed” messages in encouraging compliance with screening recommenc atiors (e.g., Rothman & Salovey, 1997). Regarding the source of communications, researchers have noted that messages are much more effective :f they come from sources with high perceived status anc credi­ bility. That effect can work in general awareness cam­ paigns, as when the highly credible daytime news host Katie Couric went on-air to demonstrate the importance of colonoscopy. That on-air broadcast was so effective in triggering a broad increase in the number of colonoscopies that scientists have referred to the observed spike in usage as the “Katie Couric effect” (Cram et al., 2003). In a similar way, research has shown that a screening recommendation will have greater influence on a patient’s behavior if it is delivered by a physician, or if it is attributed to a credible medical source, than if it is delivered through other agents (Meissner et al., 20C4). The Katie Couric effect also illustrates the powerful influence that a compelling narrative can have in “trans­ porting” an audience member into the mindset, emotions, and problem-solving strategies of a featured protagonist (Green & Brock, 2000'. Xreuter and his colleagues 2007) have been exploring ways in which a narrative form can be utilized to improve adherence to screening guidelines within minority populaiions. These researchers developed a platform in which similarly situated minorities (e.g., Afri­ can American womer) shared their own personal stories of

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how they confronted a decision to obtain screening services and, after natural trepidation, followed through with noted success. Through a number of studies these researchers demonstrated participants’ greater recall for screening mes­ sages, greater acceptance of recommendations, better in­ tentions to comply, and lessened medical mistrust when a narrative framework was employed than when an exposi­ tory or message-based approach was employed (Kreuter et al., 2007). While social psychologists have studied the influence of message framing and source credibility on screening compliance, health systems researchers have been conduct­ ing root-cause analyses (i.e., using analytic techniques from human factors psychology to identify and rectify the originating cause, rather than a symptom, of a critical error) to understand the role that suboptimal communication pro­ cesses may play in precipitating avoidable medical errors. Repeated analyses of the medical charts associated with patients diagnosed with late-stage cervical cancer, latestage colon cancer, and late-stage breast cancer have re­ vealed an alarming rate of missed opportunities to commu­ nicate proactively with patients about their pending need for an overdue screening test (Taplin, Clauser, Rodgers, Breslau, & Rayson, 2010; Zapka et al., 2004). These errors of omission are part of the “hidden epidemic” of medical error within a fragmented, fee-for-service health system that has triggered systematic evidence reviews by the In­ stitute of Medicine and by the Agency for Healthcare Research and Quality. Proposed human factors remedies have included organizational training programs to create a culture of quality, programs to enhance access through onsite language interpreters and weekend care, the deploy­ ment of a fully functional electronic health record (EHR) system, and the implementation of patient assistance pro­ grams and reminders. Of these, the intervention that led to the greatest improvement in system-wide adherence rates was the deployment of fully functional EHRs (Friedberg et al., 2009). From a human factors perspective, EHR systems offer greater cognitive support for adherence to screening recommendations through system-generated reminders; they prevent errors of omission through internal quality checking routines; and they offer a systems-level view of practice performance to guide management.

N ew M e d ia a n d In fo rm a tic s The reason why contributions from the EHR system were substantive has to do with the nature of medical care. Medicine is inherently an information-intensive practice. With anywhere from 2,000 to 4,000 new publications added to the National Library of Medicine’s online data­ base per day and with practice settings that typically inter­ act with 229 other physicians within 117 different practices just to coordinate care, it is becoming impossible to prac­ tice evidence-based medicine in a coordinated way without the help of information technology (Institute of Medicine, 2012a). EHRs are becoming the mainstay for ensuring better communication and reducing errors of omission within and between health care settings (Institute of Med­ icine, 2012b; Singh, Naik, Rao, & Petersen, 2008).

February-March 2015 • American Psychologist

face to engage users in considering the importance of seeking out screening services and to direct them toward local resources. Personally recorded narratives (McQueen, Kreuter, Kalesan, & Alcaraz, 2011) and interactive Web tools (Diefenbach & Butz, 2004) have similarly been used to educate patients about screening and to equip patients with better mental models for dealing with a diagnosis if the screening reveals presence of disease. E m erg ing O p p o rtu n itie s

L in d a D . C a m e ro n

As hypothesized by health services researchers, cre­ ating a new health care environment in which secondary prevention services are offered routinely and consistently across all patient populations would mean creating a more reliable system of communication and coordination at the organizational level to ensure that patients and them care teams are apprised of current guidelines (Yabrcff, 2308). Those prescriptions aie consistent with implications of applying a behavioral informatics approach to medicine, in which organizational designers take into account tne roles of incentives, mental maps, default options, systemic feed­ back, human error, and structured decision nak rg to nudge system performance (Hesse, Ahern, & Woods, 2011). Initial evidence supports the use of organizational communication systems to improve screening rates. A sys­ tematic evidence review found that the use of a mulifunctional EHR was 3.3 times more likely to improve breast cancer screening rates and 4 times more likely to increase colorectal cancer screening rates over traditional systems in primary care (Friedberg et al., 2009). Other ongoing re­ views of evidence from interventions that utilize EHRs have reported similar findings with the caveat teat EHRs are not sufficient to elicit change on their own: rarher, a good electronic system must fit within a greater context of organizational support and training (Buntin, Burke Hoaglin, & Blumenthal, 2C11). Outside of clinical settings, new media applications have been used to extend awareness and to target vulner­ able or underserved groups with secondary prevention mes­ sages. For example, behavioral researchers in St Louis, Missouri, have used computerized informational kiosks placed strategically in high-traffic areas to attract the atten­ tion of underserved populations (Kreuter et al., 2306) The kiosks use touch screens and an attractive graphical inter­

February-March 2015 » American Psychologist

In November 2009, the U.S. Preventive Services Task Force revised its mammography recommendations for women ages 40 through 50, creating a firestorm of political controversy, personal confusion, and lingering anxieties (Squiers et al., 2011; Weeks, Friedenberg, Southwell, & Slater, 2012). What this and similar events have made salient to cancer researchers is that there must be a shift in the ways in which people talk about cancer, in general, and about screening, in particular. It will no longer be sufficient to push national awareness campaigns for individual tech­ nologies (e.g., mammogram) at specific ages (e.g., age 40), and then be caught flat-footed when recommendations change. Nor will it be appropriate to abandon the conver­ sation if patients or journalists fall prey to anecdotal think­ ing or other biases that commonly cloud the screening story (Arkes & Gaissmaier, 2012; Fagerlin, Wang, & Ubel, 2005). New techniques and communication frames will be needed to help patients adhere to evidence-based recom­ mendations, even when those recommendations argue against screening for some conditions at certain ages. To illustrate, Arkes and Gaissmaier (2012) were able to use an array of images (an iconograph) to describe the lack of mortality benefits for men being screened with PSA tests compared with men who had not been screened, while at the same time showing the increase in negative side effects (e.g., incontinence, erectile dysfunction) for men receiving the test. This type of data visualization, or information graphic, appears to be effective in many cases for reversing the tendency of patients to think in terms of unsupported, anecdotal stories (Fagerlin et al., 2005). Likewise, an un­ derstanding of how patients prefer to receive either good news or bad news after receiving a screening test could offer guidance on how to break that news to patients (Legg & Sweeny, 2014). Continued work is needed to improve the communication frames that are taken as defaults throughout health care systems.

Diagnosis a n d T rea tm e n t Perhaps one of the most significant changes in medicine over the past several decades is an evolution from a phy­ sician-centric model of care delivery to a patient-centric model (Bade, Aaron, & Parker, 2009; Siminoff & Step, 2005). The shift not only underlies an effort to migrate from a simple medical model to a biopsychosocial model, but it also bolsters many of the quality improvement strat­ egies articulated by the Institute of Medicine (2001, 2011).

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The R ole o f P sych olo gical R esearch

Much of the research over the past few decades has focused on creating successful training programs for oncologists and primary care physicians to improve providers’ sensi­ tivities to their patients’ communication needs (e.g., Bays et al., 2014). The training materials may emphasize com­ munication skills, such as empathetic listening, motiva­ tional interviewing (e.g., using open-ended questions to solicit information), and watching body language; or they may cover specific content such as breaking bad news, presenting a prognosis, making decisions about palliative care, or facilitating a transition to hospice (Baile et al., 2009). Curriculum materials can include chapters in med­ ical texts, course syllabi, patient simulations, and continu­ ing education lectures at conferences. Together, this train­ ing can help to improve the patient’s experience before, during, and after care (Kissane et al., 2012). Although improvements to providers’ communication skills may be a necessary starting point for improvements in cancer diagnosis and care, they may not be sufficient. After all, the time a patient can actually spend discussing his or her condition with an individual physician within a clinical encounter is very limited. In the “hurry up and wait” reality of a protracted care process, the patient will spend much more time outside of the care setting or inter­ acting with many other members of the care team. Here, small media such as patient brochures, decision aids, and videos and care instructions can help fill some of the information gaps in between clinical visits (Fagerlin, 2009; Hawkins et al., 2011; Semple & McGowan, 2002). Deci­ sion aids designed to take patients through the comparative consequences of their anticipated choice and that then help patients weigh those consequences against their own values can do much to clarify uncertainties and facilitate patientprovider discussions during the precious moments of a clinical encounter (Diefenbach & Butz, 2004; Nelson, Stefanek, Peters, & McCaul, 2005). Similar to the use of iconographs to effectively communicate statistical infor­ mation related to the risks and benefits of cancer screening, these and other data visualizations have an important role to play when communicating the risks and benefits of cancer treatments (Fagerlin, Zikmund-Fisher, & Ubel, 2011). Being mindful of a patient’s numeracy level and using data visualization to overcome associated communication challenges are important, particularly when the nature of the treatment itself is complex (e.g., when it is based on the genetics of the cancer, as in HER2+ breast cancer; Moja et al., 2012) or when there is some level of uncertainty related to the treatment protocol itself. Organizational hotlines from the National Cancer Institute, the American Cancer Society, and local hospitals can be used to supplement information received in the clinical encounter. Other supports have included the extended use of counseling psychologists, social workers, and resource li­ braries (Institute of Medicine, 2008; Jacobsen, Holland, & Steensma, 2012). In a randomized trial of phone-based consultation planning for breast cancer survivors, phone204

based consultation planning was as effective (and signifi­ cantly less costly) than in-person consultation planning at supporting decision self-efficacy (Belkora et al., 2012). Patient navigator programs, usually consisting of nurses who are trained in care coordination and who are aided by checklists and resource lists, have made a difference in helping patients navigate the labyrinth of specialty services addressing practical concerns (e.g., financial, employmentrelated) and psycho-oncological care (Wagner et al., 2010). Likewise, an understanding of how patients process ambi­ guity (Han, 2013) and how they deal with good and bad news (Sweeny & Shepperd, 2009) can lead to better sup­ ports for patients’ personal preferences in communicating prognostic information. New M e d ia a n d In fo rm atics From the earliest days of the Internet, individuals with cancer have found value in connecting with each other and in mining the online environment for information to help them cope with their disease (Eysenbach, 2003; Taylor et al., 1994). There, people could put their own disease course into perspective by listening to how oth­ ers have coped with similar treatments. They could get second opinions on prescribed therapies, learn about potential side effects, find out about new treatments and clinical trials, and participate in discussions as a way of giving back to their newfound, virtual communities (Rimer et al., 2005). Social psychologists, linguists, and others are just beginning to understand how the commu­ nity dynamics of these new social media can be har­ nessed to provide better support for patients throughout their experience (Chou, Hunt, Beckjord, Moser, & Hesse, 2009; Hesse, O’Connell et al., 2011). Within the health care system, efforts are under way to improve communications and continuity of care through incentives offered for the “meaningful use” of health information technologies. The purpose of the meaningful use legislation, wherein “use” is in its es­ sence a behavioral construct, is to improve system out­ comes along five dimensions: (a) improving safety and effectiveness within systems according to human factors principles; (b) encouraging patient engagement; (c) pro­ tecting continuity of care; (d) moving toward account­ ability across populations of patients; and (e) ensuring patient confidentiality and privacy (Blumenthal, 2010; Hesse, 2010). Early evidence suggests that the financial incentives have been effective in boosting broad adop­ tion of health information technologies, with adoption of at least some aspect of an EHR reaching close to 50% of practices in the United States in 2011 and close to 100% in health maintenance organizations (Jamoom et al., 2012 ).

E m erg in g O p p o rtu n itie s

The purpose of the “meaningful use” stipulation was to focus investment on the interface between information systems and their users and, in accordance with recom­ mendations from the U.S.-based National Research Council (2009), to provide better “cognitive support for February-March 2015 • American Psychologist

health care providers, patients, and family caregivers” (p. 5). Yet, from a human factors perspective, there is much more work to be done. A study commissioned by the American Medical Association of U.S. physicians suggested that although doctors are generally supportive of the purpose of EHRs in concept, they are quite wor­ ried that the ways in which the systems are being im­ plemented do not accommodate physician workflow, do not interoperate (communicate) with other hospital sys­ tems, and are poorly designed from the perspective of a usable hum an-com puter interface (Friedberg et al., 2013). Ongoing work is needed to improve the human factors of these new electronic systems (Hesse & Shneiderman, 2007) and to adjust their implementation to realize a new, more efficient level of organizational workflow (Karsh, 2009).

Survivorship a n d End-of-Life As methods for early detection and treatment become more effective, and as the general population ages, the total number of people who count themselves as cancer survi­ vors will increase. It has been estimated that there were 14 million cancer survivors alive in 2013, with that number expected to climb above 20 million within the next decade (American Cancer Society, 2012). Unfortunately, the tran­ sition from cancer patient to cancer survivor is often illplanned and fraught with its own set of distinct communi­ cation challenges (Institute of Medicine & National Research Council, 2006). The most common concern is a fear of recurrence (Rechis et al., 2011), but the survivor will also need to be on the lookout for new instances of secondary cancers or late-stage side effects from treatment. The side effects might themselves become a serious comorbid condition, such as damage to cardiac muscle during some types of chemotherapy, and will need proactive at­ tention to manage (Aziz, 2007). Late-stage psychological consequences may also manifest, including perceptions of fragility, depression, cognitive deficits, ongoing fatigue, or malaise (Stanton, 2006; Stanton et al., 2005). These symp­ toms can disrupt healthy life habits, perpetuating risk for continued illness (Alfano & Rowland, 2009; Institute of Medicine & National Research Council, 2006). The R ole o f P sych o lo g ical Research

Psychologists have been working to understand first what the needs of cancer survivors are and then how to fill those needs through better communication supports and links to services. The goal is to create what social psychologist Shoshana Zubboff referred to as a system of “deep support” for cancer survivors over their life spans, and not just a reactionary system of crisis management that steps into play only when problems have become insurmountable (Zuboff & Maxmin, 2002). It would be a system congruent with the “chronic care model” as proposed by Wagner and colleagues (2010) to meet the needs of a highly activated and empowered patient base with the responsiveness of a prepared and patient-centered care environment. Psychologist Jessie Gruman, herself a four-time can­ cer survivor, emphasized the skills that patients need to

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learn on their side to become an activated or engaged partner in their own health care (Gruman et al., 2010). Captured as part of the “engagement behavior framework,” the enumerated skills were compiled after conducting in­ terviews with hundreds of patients and caregivers about their experience with care. The resulting 10 categories of activated behaviors included (a) finding safe and decent care, (b) communicating effectively with health care pro­ fessionals, (c) organizing health care, (d) paying for health care, (e) making good treatment decisions, (f) participating in treatment, (g) promoting personal health, (h) obtaining preventive health care, (i) planning for end-of-life deci­ sions, and (j) constantly seeking health knowledge. Unfortunately, most evidence suggests that postcancer support systems fail to engender the type of posttreatment engagement suggested by the engagement behavior frame­ work, and the absence of effective communication systems is often highlighted as contributing to the problem. Cancer survivorship care plans have been introduced as an initial response to the problem, by compiling posttreatment direc­ tives into a document that can steer the survivor’s future decisions and can be shared with the myriad of providers who will see the survivor in the future (Ganz, Casillas, & Hahn, 2008). The essential elements of that care plan remain a topic of ongoing research and development (Re­ chis, Beckjord, Arvey, Reynolds, & Goldrick, 2012). Discussions of end-of-life care have been even more difficult to manage. Strong evidence suggests that “heroic efforts” are often overused at the end of life, with the end result being an unnecessary burden on patients and their families and an unnecessary drain on system resources (Brawley & Goldberg, 2012). Efforts are under way to improve the quality of communications toward the end of life while building lifetime supports for cancer patients into the fabric of care across the trajectory of their disease (Parry, Kent, Forsythe, Alfano, & Rowland, 2013). New M e d ia a n d In fo rm atics Analyses of the National Cancer Institute’s Health Infor­ mation National Trends Survey have given insight into how cancer survivors navigate the new media environment. Results have suggested that when patients were near their diagnosis, and presumably under the supervision of their care teams, they tended to report that their physicians were their first source for cancer information when questions arose. Cancer survivors, those who were several years away from their diagnosis, resembled the general public in saying that although they preferred going to their physi­ cians first, their actual first sources of health information tended to be found on the Internet (Hesse, Arora, Beckjord, & Finney Rutten, 2008). In accordance with predictions from the Institute of Medicine reports on cancer survivors, these same respondents reported being generally dissatis­ fied and confused with the cacophony of conflicting signals in the broad new media environment (Arora et al., 2008). To remedy this general lack of ongoing support for cancer (and other) survivors, leaders within the U.S. De­ partment of Health and Human Services have been striving to create a life-sensitive health record that will follow all

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patients seamlessly across boundaries of care over the course of their lives (Brailer, 2005). Once this type of technological capability is in place, the opportunity may then be to develop patient-facing applications— embodied in the concept of a personal health record—that will serve to make the information available from their cumulative interactions with the medical system interpretable. Com­ munication researchers have been preparing for that even­ tuality by working now to present information to cancer survivors in ways that are understandable and actionable (Baker et al., 2011); that support synchronous (i.e., in “real time,” as through the telephone) and asynchronous (i.e., in “delayed time,” as with e-mail or texting) connections to advice staff (Hawkins et al., 2011); that present ongoing estimates of risks through online calculators (Waters, Sul­ livan, & Rutten, 2009); and that support choice through online decision support technologies (Nelson et al., 2005). Even at the end of life, when communications are the most difficult and the need for human touch is especially acute,

communication researchers have been able to demonstrate how structured support systems can help patients and their families cope with difficult decisions around advanced directives, financial planning, palliative care, and bereave­ ment planning (Ditto & Hawkins, 2005). E m erging O p p o rtu n itie s

As the population continues to age and treatments for cancer continue to improve, the need to reconceptualize cancer as a chronic disease, rather than an acute terminal disease, will grow as well. Research will be needed to create the persistent communication systems required to support the biopsychosocial needs of cancer survivors well beyond the end of treatment. This will include helping patients attend to their ongoing psychological needs, in­ cluding longstanding feelings of vulnerability, depression, changes in body image, and feelings of posttraumatic stress, all while remaining vigilant to possible signs of recurrence and adhering to recommendations for healthy

Table 1 O verarching Themes and Emerging O pportunities for Psychologists Across the Cancer Care Continuum Continuum

O verarching themes

Emerging opportunities

Primary prevention

• Research on message framing, risk-to-action links, and source characteristics helps guide effective public health policies • Diffusion of Internet allows for personalized tailoring of risk reduction messages

• Burgeoning interest in mobile health apps makes it easier to support healthy behavior through self-regulatory feedback (if app is evidence-based) • Affordable Care Act emphasizes prevention as a w ay to improve patient outcomes and reduce costs

Secondary prevention

• Prospect theory frames prevention messages around "anticipated loss" • Analysis of source effects reveals the importance of provider recommendations • Human factors analyses suggest ways of improving adherence to guidelines

• Conversations around screening will become more nuanced as more is learned about personal risk • EHR (electronic health record) systems offer promise of reminding care teams and patients when guideline-consistent screening is due, providing that there is a w ay of reducing "reminder fatigue" through better interface design

Diagnosis and treatment

• Communication training programs improve delivery of sensitive information to patients • Decision research can improve accuracy of diagnosis, effectiveness of treatments, and adherence to patient values • Psychological research offers insights into essential elements of care planning

• N ew "ecosystem" of health information technologies makes it feasible to offer cognitive support to providers, patients, and caregivers through synchronous (real time) and asynchronous (delayed time) channels • "M eaningful use" incentives are consistent with a behavioral view of health information technology

Survivorship and end of life

• Transition from patient to survivor requires attention to long term sequelae of treatment, psychological effects, and ongoing vigilance • Communications near the end of life preserve patients' values, protect family assets, and prepare families for bereavement

• Creation of a life-sensitive, personal health record (PHR) can be used to support persistent conversations and situational awareness across care teams • Systemic improvements to end-of-life communication offer means for protecting quality of life and patients' values as well as reducing overall expenditures

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living (Institute of Medicine & National Research Council, 2006). Ongoing work will also be needed to support the needs of patients near the end of life. This will include creating the systems that trigger the necessary, but often difficult, conversations surrounding advanced directives, financial planning, and family bereavement. Work will be needed to ensure that all patients receive the best, most dignified support possible as they approach end-of-life decisions, regardless of their cultural backgrounds or de­ gree of health literacy.

Conclusion In this review, we have canvassed some of the pressing issues in communication across the cancer continuum to be addressed through psychological research and practice. Throughout the article we have identified themes in the ways psychological research from across many subdisci­ plines has contributed to a better understanding of what constitutes an evidence-based approach to cancer commu­ nication. At the same time, we have noted that a rapid change in the communication environment is presenting new opportunities for improving health care systems, and for extending the reach, efficiency, and effectiveness of public health communications. That same change, we note, also brings with it confusion on how best to utilize the emerging plethora of communication channels. In review­ ing the evidence, we have focused on thematic, processoriented conclusions that can be generalized across chan­ nels, rather than emphasizing point-by-point comparisons from one modality to the next. To provide a summary of these observations, we pres­ ent in Table 1 a matrix offering at a broad level some of the thematic conclusions that can be drawn from the literature we reviewed within each phase along the continuum of cancer control and care. Adjacent to those conclusions, we have highlighted the continued opportunities that will likely emerge within the changing context of oncology care. It is our hope that by laying out these opportunities in this article, we will inspire a new generation of behavioral researchers to help improve the processes by which evi­ dence-based oncology care is diffused throughout care and by so doing accelerate population progress against cancer today. REFERENCES Abrams, L. C., Padmanabhan, N., Thaweethai, L., & Phillips, T. (2011). iPhone apps for smoking cessation: A content analysis. American Journal o f Preventive Medicine, 40, 279-285. doi:10.1016/j.amepre .2010.10.032 Alfano, C. M„ & Rowland, J. H. (2009). The experience of survival for patients: Psychosocial adjustment. In S. M. Miller, D. J. Bowen, R. T. Croyle, & J. H. Rowland (Eds.), Handbook o f cancer control and behavioral science: A resource fo r researchers, prqactitioners, and policymakers (pp. 413-430). Washington, DC: American Psychologi­ cal Association. American Cancer Society. (2012). Cancer facts & figures 2012. Atlanta, GA: Author. Arkes, H. R., & Gaissmaier, W. (2012). Psychological research and the prostate cancer screening controversy. Psychological Science, 23, 547553. doi: 10.1177/0956797612437428

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