A conceptual model of the multiple stages of communication necessary to support patient-centered care

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1 review For reprint orders, please contact: A conceptual model of the multiple stages of communication necessary to support patient-centered care Patient-centered care requires that both healthcare providers and patients have access to comparative effectiveness research (CER), which provides direct comparisons of the risks and benefits of available clinical options. However, insufficient attention has been paid to developing the comprehensive communication systems necessary to ensure that CER reaches patients and healthcare providers. In this review, we propose a model of the multiple stages of CER communication necessary for patient-centered care and review the existing research and gaps in knowledge relevant to each stage. These stages include: promotion of the underlying concepts and value of CER; translation of CER results; dissemination of CER results; and utilization of the results of CER in shared decision-making between patients and providers. A comprehensive approach to CER communication is necessary to ensure that the growing interest in and availability of CER is able to support a more patient-centered model of healthcare. Meghan C Halley* 1, Katharine AS Rendle 1,2 & Dominick L Frosch 1,3,4 1 Palo Alto Medical Foundation Research Institute, 795 El Camino Real, Palo Alto, CA 94301, USA 2 University of Michigan, Ann Arbor, MI 48109, USA 3 Gordon & Betty Moore Foundation, 1661 Page Mill Road, Palo Alto, CA 94304, USA 4 University of California, Los Angeles, CA 90095, USA *Author for correspondence: halleym@pamfri.org KEYWORDS: communication dissemination shared decision-making translation The last two decades have been marked by a growing recognition among researchers, healthcare providers and policy-makers of the importance of engaging patients in decisions about their healthcare as part of a larger shift toward a patient-centered model of care. In order for this shift to take place, however, both providers and patients must have access to research and specifically the results of comparative effectiveness research (CER) in order to provide truly patient-centered care. The concept of CER is based on widely accepted standards of evidence-based research evaluating new and existing medical interventions. The growing emphasis on CER, in particular, is reflective of the rapid growth of the field of medicine over the last century, which has, in a number of cases (e.g., treatment for benign prostatic hyperplasia and screening for colorectal cancer) produced multiple clinical options for a single condition without providing strong, comparative evidence of the relative risks and benefits of each option [1 3]. CER is specifically designed to provide this direct comparison of multiple options in a single study or review of existing research to give providers and patients the information they need to make an informed choice. In some cases, CER may ultimately result in evidence that clearly identifies a single, superior option. However, more often it results in evidence that merely clarifies the trade-offs between different options that are sensitive to patient preferences. CER is unique in its emphasis on the inclusion of patient-centered outcomes to evaluate these options [4]. In contrast to standard health outcomes (objective outcomes of morbidity and mortality), patient-centered outcomes reflect patients concerns, preferences and quality of life (e.g., potential costs, impact on daily tasks and psychosocial impact). CER, therefore, provides not only direct comparison of the risks and benefits of multiple available clinical options, but also provides an evaluation of these options in terms of a wide range of outcomes that are important to patients. As stated in the inaugural issue of this journal, the goal of CER is to better part of /CER Meghan C Halley, Katharine AS Rendle & Dominick L Frosch 2(4), (2013) ISSN

2 review Halley, Rendle & Frosch answer the question which treatment will work best, in which patient and under what circumstances? [1]. CER is essential for patient-centered care because it provides information on the comparative outcomes that are central to engaging patients in their treatment decision-making. Recent legislation has significantly increased both public interest and available funding for CER [4]. Despite this recognition, however, insufficient attention has been paid to developing the comprehensive communication systems necessary to ensure that CER reaches patients and providers in a format that is clearly understandable, readily accessible and actionable. This is particularly challenging in the case of CER, which often results in complex, nuanced information on the risks and benefits of various options in terms of multiple outcomes. Although there are a number of barriers currently hindering the integration of CER into clinical care (e.g., misaligned incentives and feefor-service medicine), CER results can only support patient-centered care if they are effectively communicated to providers and patients [5]. Existing research does speak to some aspects of the communication of CER, most notably in the context of shared decision-making (SDM) within the clinical encounter [6]. However, communication of CER results includes, but is not equivalent or limited to, SDM. To engage in SDM, providers and patients need to discuss the relative risks and benefits of multiple clinical options information provided through CER. However, in SDM, patients and providers must also discuss the patients goals, values and preferences, and negotiate a treatment decision. Furthermore, in order for SDM to take place, patients and providers must first have access to the results of CER in a form that is understandable. Therefore, while SDM is an essential component of CER communication, it represents only one stage of CER communication. In this review, we propose a model of the multiple stages of CER communication necessary to support patient-centered care. In this model, communication is broadly conceived as both the direct and indirect transfer of information and ideas between individuals and institutions. The model, therefore, includes multiple forms of communication, including both communication about CER in the clinical encounter and the communication of CER through translation and dissemination of CER results to providers and patients. This model illustrates the need for a comprehensive approach to CER communication to ensure that the growing interest in and availability of CER is able to support a more patient-centered model of healthcare. A comprehensive model of CER communication Our model is comprised of four core stages (Figure 1) including: Promoting CER to patients and providers: this stage of communication involves promoting the use of CER through educating both providers and patients about the meaning and value of CER and its important role in patient-centered care; Translating CER for patients and providers: this stage of communication involves translating the complex information produced by CER into formats that are clearly understandable to both patients and providers; Disseminating CER to patients and providers: this stage of communication involves utilizing efficient methods of dissemination to deliver the translated results of CER into the hands of patients and providers; Utilizing CER in the clinical encounter: this stage of communication involves patients and providers discussing the translated, disseminated results of CER by engaging in SDM in the clinical encounter. The stages in this model are illustrated as sequential because each stage is both a necessary prerequisite for and an underlying driver of effective communication at subsequent stages. In addition, evaluation to identify best practices and relevant outcomes of successful CER communication must occur at each stage of the model, and for the model as a whole. This model was developed as the result of a narrative review of the literature on communication and dissemination of CER. The following search terms were used to query the PubMed database [101] for relevant literature: Patient involvement decision-making (2084 citations retrieved); Increase patient participation (1983 citations retrieved); Shared decision making AND patient (1350 citations retrieved); Decision aid (599 citations retrieved); Risk communication patient (285 citations retrieved); Dissemination comparative effectiveness (190 citations retrieved); Dissemination medical evidence (1290 citations retrieved); and Social media 422 J. Compar. Effect. Res. (2013) 2(4) future science group

3 A conceptual model of the multiple stages of communication necessary to support patient-centered care review CER results Stage one: promoting CER to patients and providers Stage two: translating CER for patients and providers Stage three: disseminating CER to patients and providers Stage four: utilizing CER in the clinical encounter Patient-centered care Evaluating CER communucation Figure 1. A conceptual model of comparative effectiveness research communication. CER: Comparative effectiveness research. (390 citations retrieved). The 8171 citations across all search terms were reviewed for duplication and relevance to communication and dissemination of CER, resulting in 852 unique citations. For these, full articles were retrieved and reviewed by the authors. In addition, where research specifically addressing communication of CER was limited, we drew from existing research on best practices for communicating other types of medical information (e.g., clinical guidelines). Although CER differs in its content and complexity [7], some of the successes and failures of communicating other types of health information may apply to the communication of CER. The approach used in developing the model from this narrative review was inductive in that the general categories (the stages of the model) emerged from a fine-grained analysis of the literature through an iterative process that involved extensive, regular meetings of the investigators involved in order to refine these categories and the literature relevant to each. It is not based on a published model in the literature. As opposed to existing models related to this topic, which are focused more generally on implementation [8,9], this model fills a gap in the literature specifically on communication of CER in order to more accurately identify and characterize the state of knowledge and existing gaps in need of future research to address this key component necessary for integration of CER results into clinical care. Finally, while this model is focused on communication of CER with regard to patients and providers, we recognize that there are other stakeholders involved in the broader process of implementing CER into clinical practice. However, as this review is focused on communication, and specifically on the stages of communication necessary to support informed, mutually engaged decision-making between patients and providers, we have chosen to focus on these specific stakeholders communication needs. In the following sections, we present our review of the existing literature in relationship to each stage of our model of CER communication. Additionally, we identify the primary areas in need of future research to evaluate and identify best practices for each stage of CER communication. Stage one: promoting CER to patients & providers An essential initial stage of CER communication involves communicating the concept and value of CER to both providers and patients. This includes the promotion of CER results not only through the specific results themselves, but also through communication of the foundational concepts underlying comparative effectiveness and the value of utilizing CER in medical decision-making. Promoting CER to patients The need for communication at this stage stems largely from a lack of understanding of the foundational concepts underlying CER. The concept of equipoise that a clear best choice may not exist and that each option involves different trade-offs is unfamiliar to many [10]. Surveys suggest that most patients do not recognize that multiple clinical options are often available and instead assume that the healthcare provider has chosen the only or the best option. Furthermore, healthcare providers rarely communicate, and patients rarely understand, the fundamental uncertainty in medical diagnostics and treatment [11]. Educating patients about the relationships between equipoise, uncertainty and medical decision-making is an important first step, not only for successfully communicating future science group 423

4 review Halley, Rendle & Frosch CER, but also for creating demand for this research by helping patients recognize the value of this information for making informed medical decisions [12]. Public confusion and resistance to recent changes in breast and prostate cancer screening guidelines illustrate the consequences of forgoing this initial stage of promoting CER. After reviewing the results of years of research on the optimal timing and frequency of breast and prostate cancer screening, in 2009 the U.S. Preventive Services Task Force changed the recommended age to begin mammography screening for breast cancer from 40 to 50 years [13]. Then, in 2011, the U.S. Preventive Services Task Force withdrew support for the use of routine prostate-specific antigen tests to screen for prostate cancer after the results of a comparative review of the literature found that screening provided little benefit over no screening and was associated with increased harms stemming from overdiagnosis [14]. There has been significant public confusion over these changes, founded in part on entrenched public beliefs about the benefits of screening and also on a lack of understanding of the risk and uncertainty inherent in all types of medical care even those that may appear benign, such as screening. This negative public response illustrates the challenges inherent in communicating complex CER results. It also highlights the need for further research to develop best practices for educating patients and the public at large about the value of CER as a tool for understanding the relative risks and benefits of clinical options. To date, little research has examined how best to communicate the meaning and value of CER to patients. Elwyn and colleagues suggest that the ability to communicate the concept of equipoise ( professional equipoise) represents a core skill that providers must develop in order for an effective discussion of CER to take place [15]. While the authors provide examples of effective and ineffective professional equipoise, more research is needed to develop clear guidelines for healthcare providers for communicating equipoise to patients. Furthermore, organizations focused on CER, such as the Patient-Centered Outcomes Research Institute and the Agency for Healthcare Research and Quality (AHRQ), need to consider not only how to communicate the results of CER to patients and providers, but also how to communicate the meaning and value of CER to avoid confusion and misunderstanding of this important source of medical evidence. Promoting CER to providers Efforts to promote CER need to target not only patients, but also healthcare providers. The case of colorectal cancer screening provides an example of this need. Over the past decade, numerous professional organizations have endorsed several tests as efficacious for colorectal cancer screening [16]. These guidelines state that the choice of test should be determined through a SDM process between the patient and provider. However, surveys show that the majority of providers rarely discuss all screening options, with most continuing to push for colonoscopy despite sound, evidence-based alternatives [17,18]. These surveys suggest that although providers may have a better understanding of the uncertainty inherent in medical diagnosis and treatment, they still practice as if there is clearly a best choice for all patients rather than acknowledging the c omparative risks and benefits of each option. A recent project by the RAND Corporation (CA, USA) identified multiple root causes behind the failure of these findings to be incorporated into practice [7]. The study focused on diverse clinical areas, but across all areas the investigators noted either no change or limited or slow uptake of CER results in practice. Among the many barriers investigators identified were certain, firmly rooted beliefs among providers for example, that newer interventions are better, or that intervening aggressively is better than not acting that are contrary to the evidencebased approach of CER. Indeed, the investigators identified the failure to address providers preexisting beliefs as one of the barriers to adoption of CER results in practice [7]. Furthermore, the fact that CER results lay out the risks and benefits of various procedures without identifying one best clinical option was also found to serve as a barrier. The absence of a single practice recommendation, the authors concluded, led to selective interpretation of results based on the providers beliefs of what was best [7]. Evaluating CER promotion Promotion of the underlying concepts and value of CER has received little attention from researchers, and therefore little is known about the best practices for communication at this stage. Surveys assessing patients and providers current understanding of and attitudes toward CER provides one potential method for evaluation, but existing research using these measures is limited, and best practices for the successful 424 J. Compar. Effect. Res. (2013) 2(4) future science group

5 A conceptual model of the multiple stages of communication necessary to support patient-centered care review promotion of CER have yet to be identified. Research evaluating attitudes towards SDM does suggest that the majority of both patients and providers prefer an engaged approach to medical decision-making a factor that may facilitate the promotion of CER. However, a preference for SDM does not equate to an understanding of the core concepts and value of CER [19,20]. Other potential outcomes of the effective promotion of CER such as a reduction in public confusion or resistance to changes in clinical guidelines as discussed above may indicate success, but are difficult to measure. In exploring effective methods for promoting CER, therefore, researchers must also identify appropriate outcome measures for defining successful promotion. Stage two: translating CER for patients & providers Even if both providers and patients understand the underlying concepts and recognize the value of CER, they cannot act on this understanding if they do not have access to CER results in an understandable format. In this section, we review the efforts that have been made to identify the most effective methods of translating CER for patients and providers. Most research has focused on translating CER for use by patients, with limited examination of best practices for translating CER for use by providers. Translating CER for patients Decision support interventions (DESIs) represent the primary method by which complex CER results and particularly results that identify multiple potential clinical options as opposed to one best option have been translated into information that is understandable to patients. Often referred to as shared decision-making programs, or decision aids [21], DESIs are designed to clearly communicate the risks and benefits of available clinical options to patients [22]. DESIs take a variety of forms including brochures, booklets, video programs or DVDs, interactive computer programs and websites. The majority of DESIs have been developed for independent use by patients [22], and existing DESIs cover a wide range of conditions [102]. An issue of central importance in the translation of CER is identifying the most effective method for communicating the probabilistic risk and benefit information characteristic of CER results. Recent studies have identified certain formats that may be more understandable to patients, which include presenting risk information in terms of absolute rather than relative risk and presenting natural frequencies rather than conditional probabilities [23]. In addition, presenting risk information visually (such as bar charts or pictograms) appears to be more effective than presenting it in tabular format [24]. Although studies have compared the effectiveness of communicating risk information visually, little is known about best practices for effectively providing risk information verbally [25]. Another key challenge in CER translation is making these translations relevant to specific groups of patients and the decisions they face. With new advances in CER, patient-specific risk calculations, which take into account a patient s lifestyle, environment, family history and genetics, are increasingly available [25]. However, this type of risk information is even more challenging to translate, both because of its complexity and its specificity to only subsets of the patient population. Furthermore, patients characteristics such as age [26], level of education and numerical competence [27], and cultural background [28] also influence how patients interpret risk information and their preferences for communication [29]. Limited research has examined best practices for addressing this difference in risk communication and comprehension across diverse patient populations. Translating CER for providers Although healthcare providers have years of medical training, interpreting the complex risk and benefit information produced from CER remains a significant challenge for many. Despite the identification of some best practices for communicating risks and benefits numerically, surveys of healthcare providers suggest that the majority use exclusively verbal formats to communicate risk to patients [28]. One proposed reason for this is providers own difficulties with comprehending complex statistics [30,31]. In order for providers to be able to engage their patients in discussions about CER results, these results must also be translated for providers. Although limited research has explored best practices for translating risk and benefit information for providers, some efforts are underway. The AHRQ Eisenberg Center for Clinical Decisions and Communications Science has developed the Effective Health Care Program (EHC), which has been tasked with translating CER results into short, clear summaries for patients, providers and policy-makers. future science group 425

6 review Halley, Rendle & Frosch Summaries for providers are marked by significantly more detailed information than summaries for patients and outline key findings and clinical guidelines [103]. Although these summaries are already available on a range of topics, many more topics have yet to be addressed, and existing summaries will need to be constantly updated. Despite these challenges, the efforts of the EHC program are an important first step in translating CER for providers. Evaluating CER translation Significant research has evaluated the cognitive effects of DESIs on patients, and the latest systematic review of DESIs includes 86 randomized trials [32]. Studies have consistently shown that patients who use DESIs exhibit higher levels of knowledge and more accurate risk perceptions, are more willing to engage in SDM, express less decisional conflict and are less likely to remain undecided [32]. Much less is known about the behavioral effects of DESIs [32,33], although there is evidence that patients who use DESIs are more adherent [34,35], select more conservative treatment options [32,36] and are more likely to receive preventive care [32]. Research examining the effects of DESIs on health outcomes is even more limited. There is some evidence to suggest that using a DESI may lead to better general health and physical functioning for patients with certain conditions, although other studies have been unable to establish such a link [32]. In addition, the majority of the studies referenced above were efficacy trials, and further research is needed to understand and evaluate the outcomes of DESI when they are implemented in routine clinical care. Although an important first step, the tools developed by the EHC for providers are as yet untested. It remains unclear not only what effects these tools will have, but also what the appropriate outcome measures of interest should be. Although some of the measures used to assess the affects of DESIs on patients (e.g., knowledge and preference for SDM) may be appropriately translated for providers, many others are inapplicable. Additional outcome measures, such as time required to use the tool or providers satisfaction with the information provided in the tool itself may be equally important indicators of success. Other potential outcome measures, such as time spent with each patient, could also be applied to providers and could potentially provide valuable information for improving healthcare system efficiency. Stage three: disseminating CER to patients & providers Once CER has been translated into a clear format, there remains the significant task of ensuring that it gets into the hands of providers and patients in an effective manner. This section includes literature on methods of CER dissemination specifically, as well as dissemination of other types of medical information, owing to the l imited a vailability of CER dissemination research. Disseminating CER to providers The longstanding question of how best to disseminate medical evidence to providers has been a topic of much debate over the last 30 years. Although firm conclusions about best practices remain elusive, some suggestions for future directions may be drawn from the existing literature [37 42]. For example, research suggests that educational outreach visits (EOVs) may provide an effective approach [5,38]. Modeled after the pharmaceutical industry s academic detailing approach, EOVs involve individuals repeatedly and directly engaging healthcare providers and building a standing as a reliable and efficient source of information [5]. The success of this approach for the pharmaceutical industry is evidenced by the steady increase in spending on detailing [43]. Nevertheless, the cost effectiveness of this approach versus less intensive approaches to dissemination is unknown. Moreover, it is unclear where the resources would come from for disseminating nonindustry sp onsored CER results. Automated reminders either paper-based or electronic also appear to offer an effective mode of disseminating medical evidence to providers [38]. However, there are clear limits to these systems, as illustrated by increased discussion of alert fatigue in the context of electronic medical record implementation [44]. More passive dissemination methods such as lectures and conferences have consistently been shown to be ineffective in provider uptake of medical evidence [38]. On the other hand, interactive modes of dissemination, such as educational meetings or workshops, are consistently reported as effective [38,42]. Finally, research on the effectiveness of distributed educational materials, one of the most widely-used forms of dissemination, has found only limited evidence of positive outcomes in terms of provider knowledge and practice [38,39]. However, given the low cost of this approach, it may still offer some benefit [38]. 426 J. Compar. Effect. Res. (2013) 2(4) future science group

7 A conceptual model of the multiple stages of communication necessary to support patient-centered care review Dissemination of CER faces many of the same barriers as dissemination of other types of medical evidence, and the complexity of CER results themselves adds additional challenges. Although extensive research is still needed to identify best practices, some promising work is underway. AHRQ is currently supporting four large-scale projects focused specifically on dissemination of CER results to providers. Designed to complement the CER translation efforts undertaken by the EHC discussed in stage two above, these projects together offer a multifaceted approach to dissemination. The first dissemination project, the National Initiative for Promoting Evidence-Based Health Information, is focused on the promotion and dissemination of CER research summaries at the national level through a broad array of partnerships and pathways. The second project, the Regional Partnership Development Offices project, involves the development of a network of local, state and regional organizations to enhance awareness and use of CER, as well as the establishment of regional expert panels to address distinct geographic or population-specific characteristics and needs. The third project, the Online Continuing Education project, involves the development of multimedia modules based on CER results. Finally, the Academic Detailing Project utilizes EOVs to regularly disseminate CER to healthcare providers in person. These efforts have the potential to provide significant insight into effective methods for disseminating CER to providers. Disseminating CER to patients The primary area of research on dissemination of CER to patients has focused on getting DESIs into the hands of patients either at the point of care or in association with a clinical encounter. Although researchers have examined various methods of distributing DESIs, the most e ffective model has not yet been identified. Most studies examining the distribution of DESIs to patients have been descriptive and focused on the process of distribution [33,45]. Distribution models that have been explored include: lending models, where patients are prescribed a DESI at the point of care to take home and subsequently return for a consultation with their provider [46,47]; mailing models, where patients are sent a DESI to review at home prior to a consultation [48,49]; and an in-clinic preconsultation model, where eligible patients are identified on arrival in the clinic and watch a DVD-based DESI immediately prior to a meeting with their provider [33]. The ability of lending models to reach a significant proportion of eligible patients has been found to be highly dependent on having a staff member who champions the provision of DESIs to patients [50] or a physician who strongly supports providing DESIs to patients [47]. An additional important finding from studies examining mailing and lending models is that many patients do not review the DESI provided [47,51], raising questions as to how patients can be effectively encouraged to review decision support material once they receive it. The only controlled trial of a mailing model found that the intervention was more effective among patients with incomes over US$50,000 [49], and further research is needed to evaluate various types of dissemination models. Finally, novel forms of information technology are creating new and more accessible forms of health-related communication. The use of social media websites, in particular, has expanded rapidly in recent years across all levels of education, race/ethnicity and socioeconomic status, with an estimated 65% of adult internet users reporting regular use of a social networking website as of 2011, compared with only 29% in 2008 [52]. Although adults use of the internet to seek health information has been regularly documented over the last decade, the expansion of social media is enabling individuals to use the internet for health communication in new ways, including not only seeking health information, but also engaging in public conversation on health issues, eliciting other individuals personal experiences and, in some cases, sharing their own health information and experiences [104]. Although research directly evaluating methods for disseminating CER using social media remains limited, there is significant potential for using these technologies to disseminate CER results to the broader population [53 55]. Evaluating CER dissemination Limited research is available to suggest best practices for disseminating CER to providers or patients. There have been numerous attempts at disseminating DESIs as part of routine practice, with little sustained success in terms of the number of eligible patients receiving an appropriate DESI [56]. This may be due in part to the fact that changes are necessary not only at the clinic level, but at the level of medical culture and the healthcare system in the USA [57]. Although future science group 427

8 review Halley, Rendle & Frosch research has suggested some best practices for distributing DESIs to patients, there is room for significant innovation in thinking about best methods for disseminating CER to patients using methods other than DESIs, including the potential use of social media. A clear understanding of best practices for dissemination of CER to providers may soon be available. In addition to the four dissemination projects, AHRQ has also launched a separate Systematic Dissemination Program Evaluation to develop appropriate outcome measures and collect data for measuring the impact of each dissemination method. The project will track the number of dissemination partnerships developed, the number of visits to the EHC site and orders for EHC materials, the number of clinicians who utilize the online CME courses, the number of clinicians reached through academic detailing and any measurable behavior change among these providers. This large-scale program evaluation has the potential to provide valuable insight into best practices for disseminating CER to providers. Stage four: utilizing CER in the clinical encounter Once providers and patients understand and recognize the underlying concepts and value of CER (stage one), understand the results of CER (stage two) and have access to this information in a usable form (stage three), the success of the model as a whole still depends on patients and providers actually utilizing this information through a SDM process. The effective utilization of CER, therefore, requires that providers and patients have the communication skills n ecessary to engage in SDM. Improving providers communication skills Provider patient communication is central to achieving effective utilization of CER through SDM [58]. However, research has demonstrated that both providers and patients often lack the necessary communication skills to engage in these discussions. Studies have shown that only the most minimal standards of communication are being met in clinical encounters with doctors and patients [59,60]. Even when healthcare providers do engage their patients in discussions about the risks and benefits of various healthcare options, they often still pressure their patients to make particular choices [61]. Observations of clinical encounters suggest that although providers use the pronoun we to suggest a partnership, the dialogue that often follows is directive and not consistent with SDM [62]. Other factors such as race and gender of the provider relative to the patient may also impact communication, but the extent of the impact of these factors remains unclear [63,64]. Despite the importance of communication skills in engaging patients in discussions about CER in the clinical encounter, few healthcare providers receive communication training [65]. Various interventions to improve providers communication skills have suggested that the skills needed to engage in SDM can be acquired [66]. Communication training for healthcare providers has also been found in some studies to have positive impacts on patient satisfaction [67], patients confidence in their medical decisions and expectations to adhere to chosen treatment [68]. However, further research is needed to explore diverse approaches to training providers in communicating with their patients about the results of CER and to determine the long-term effects of these training programs. Improving patients communication skills Effectively communicating about CER through a SDM process also requires that patients effectively communicate their symptoms and concerns, discuss expectations and options, ask questions and potentially disagree with a recommendation from a clinician if the suggested course of action does not fit with the patient s preferences [69]. However, patients often report feeling intimidated by their healthcare providers and fearful that speaking up might lead to them being labeled difficult, and thus compromise the quality of their care [70]. Patients report that these feelings of intimidation and/or fear make it difficult for them to ask questions or request clarification of information provided to them [70,71]. Research has shown that even when multiple clinical options are available, patients decisions are significantly influenced by their providers recommendations, even when those recommendations go against the option that clearly maximizes health outcomes [72,73]. To attempt to improve patients communication skills, researchers have focused on developing patient activation interventions (PAIs). PAIs are generic, nondecision specific interventions designed to encourage patient elicitation of information about treatment options in clinical consultations [74]. PAIs take various forms, but most involve written paper or electronic materials to 428 J. Compar. Effect. Res. (2013) 2(4) future science group

9 A conceptual model of the multiple stages of communication necessary to support patient-centered care review prepare patients to talk to their healthcare providers [75], coaching of patients prior to their consultations to generate questions or a combination of both written materials and coaching [74]. Finally, new developments in DESIs have been designed for use in the provider patient encounter by providing a clear, concise (e.g., a one page Option Grid ) summary of the results of CER framed to facilitate communication between pr oviders and patients [76,77]. Evaluating CER utilization After undergoing PAIs, research suggests that patients ask more questions and are more likely to request clarification of information or instructions from their providers outcomes that could, in turn, facilitate communication about CER results [74,78]. However, little is known about the effects of these interventions outside of the context of defined research projects, or as they relate specifically to the communication of CER [74,79]. There is a pressing need to identify effective strategies for implementing interventions whose efficacy has been demonstrated in controlled experiments. The positive outcomes associated with PAIs also appear to increase when a component of physician training is added [74]. Effective discussion of CER as it relates to a patient s preferences requires that both parties have the communication skills necessary to engage in honest, but respectful, conversation about the available evidence. However, not all studies of communication training for healthcare providers have been successful in producing positive outcomes, such as increasing communication about CER between provider and patients or patient satisfaction [80]. Furthermore, few studies on provider training interventions examine their effects on patients health outcomes, and the long-term efficacy of these programs remains unclear [80], suggesting a need for further research in this area incorporating a broader range of outcomes. Conclusion Given increased interest in and support for CER, there is a pressing need for a comprehensive model of the multiple stages of communication necessary to ensure that CER supports patientcentered care. However, at many stages of the model proposed here, there is limited research to suggest best practices for CER communication. Particularly large gaps and recommendations for future research are outlined in Box 1. Furthermore, there is an overarching need to identify measures that effectively evaluate the impact of CER communication on patients cognitive, behavioral and health outcomes, as well as on physicians experiences and practice at all stages of the model. In order for the valuable results of CER to have their intended impact on medical decision-making and truly support patient-centered care, the important role of communication in ensuring this link must be recognized and significant efforts made to develop best practices for effective, comprehensive CER communication. Future perspective As demonstrated in this review, there remain significant gaps in our knowledge of best practices for communicating CER to providers and patients. In particular, future research needs to prioritize educating the public about the Box 1. Priorities for future research to support comparative effectiveness research communication. Stage one Identification of best practices to promote the foundational concepts underlying CER and its value for both patients and providers Stage two Design of effective and replicable methods to translate CER for healthcare providers Further refinement of DESIs as tools for translating CER for patients and exploration of alternatives to DESIs, particularly for ethnic minority patients and those with low literacy and numeracy Stage three Identification of efficient and accessible methods to disseminate translated CER results to providers Further refinement of DESI dissemination methods for patients and implementation from research into routine clinical care Stage four Development of interventions to improve the communication skills of providers Further refinement of patient activation interventions and implementation from research into routine clinical care CER: Comparative effectiveness research; DESI: Decision support intervention. future science group 429

10 review Halley, Rendle & Frosch fundamental concepts underlying CER through comprehensive communication and promotion. As seen in the cases of changing guidelines around breast, prostate and colorectal cancer screening, even if the results of CER are communicated to patients and providers, these results will continue to have a limited impact on practice and may cause significant public confusion if patients and providers cannot understand or accept that a single clinical option may not be best for all patients. A second priority for future research must be the translation and dissemination of CER to healthcare providers, and the ongoing work of AHRQ may soon provide insight into these issues. In order for providers to feel confident in engaging patients in the decision-making process, they must first feel confident in their own grasp of the relevant CER. Although these represent priorities, this review identified major gaps in knowledge at all stages of the CER communication. The Patient-Centered Outcomes Research Institute has established a separate mechanism for supporting research on communication and dissemination, and the results of Executive summary Background: a comprehensive model of comparative effectiveness research communication Patient-centered care requires that both healthcare providers and patients have access to comparative effectiveness research (CER), which provides comparisons of the risks and benefits of available clinical options. Insufficient attention has been paid to developing the comprehensive communication systems necessary to ensure that CER reaches patients and healthcare providers. This review proposes a model of the multiple stages of CER communication necessary for patient-centered care and examines the relevant research for each stage. Stage one: promoting CER to patients & providers This stage of communication involves promoting the use of CER through educating both providers and patients about the meaning and value of CER and its important role in patient-centered care. Existing research suggests that there is a lack of understanding of the foundational concepts underlying CER among patients and providers. Further research is needed to suggest best practices for communicating the foundational concepts underlying CER and its value to both patients and providers. Stage two: translating CER for patients & providers This stage of communication involves translating the complex information produced by CER into formats that are clearly understandable to both patients and providers. Most research has focused on translating CER for use by patients, with limited examination of best practices for translating CER for use by providers. Further research is needed to design effective and replicable methods of translating CER for healthcare providers, and to refine decision support interventions and alternative tools for translating CER for patients, and particularly for ethnic minority patients, and those with low literacy and numeracy. Stage three: disseminating CER to patients & providers This stage of communication involves utilizing efficient methods of dissemination to deliver the translated results of CER into the hands of patients and providers. Although multiple methods of disseminating CER (and specifically decision support interventions) to patients have been examined, best practices have not yet been identified. Ongoing research may soon provide evidence to suggest best practices for disseminating CER to providers, but further research is needed. Stage four: utilizing CER in the clinical encounter This stage of communication involves patients and providers discussing the translated, disseminated results of CER by engaging in shared decision-making in the clinical encounter. Patient activation interventions offer a promising method of improving patient communication in the clinical encounter and appear to have an even greater impact when paired with an intervention to improve provider communication. Further research is needed to develop best practices for improving provider communication skills, and to refine and implement patient activation interventions into routine clinical care. Conclusion Given increased interest in and support for CER, there is a pressing need for a comprehensive model of the multiple stages of communication necessary to ensure that CER supports patient-centered care. However, at many stages of the model proposed here, there is limited research to suggest best practices for CER communication, and further research is needed to address the gaps in knowledge. 430 J. Compar. Effect. Res. (2013) 2(4) future science group

11 of of Provides Reflects Comprehensive A conceptual model of the multiple stages of communication necessary to support patient-centered care review this work may begin to fill in some of the gaps in knowledge discussed above. We hope that in 10 years this need will be fulfilled, and we will know much more about how to efficiently and effectively communicate CER results to patients and providers. Disclaimer This narrative review of the literature on communication and dissemination of comparative effectiveness research was conducted under contract from the Patient-Centered Outcomes Research Institute, which requested it for internal program development. The views expressed are the authors and do not necessarily represent the view of the Patient-Centered Outcomes Research Institute. Financial & competing interests disclosure The authors have no relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties. No writing assistance was utilized in the production of this manuscript. References Papers of special note have been highlighted as: interest considerable interest 1 Greenfield S, Rich E. Welcome to the journal of comparative effectiveness research. J. Compar. Effect. Res. 1(1), 1 3 (2012). 2 Strope SA, Yang L, Nepple KG, Andriole GL, Owens PL. Population based comparative effectiveness of transurethral resection of the prostate and laser therapy for benign prostatic hyperplasia. J. Urol. 187(4), (2012). 3 Lieberman D. Colorectal cancer screening: practice guidelines. Dig. 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