The coordination of chronic care: an introduction

The coordination of chronic care: an introduction In this special issue, we are sharing a diverse group of papers that together frame the evolving field of care coordination. Care coordination is a key component of the patient experience and a hallmark of high-quality patient care in health care systems. In these papers, we explore models of effective care coordination in policy, research, and practice. These papers both report what we know and clarify what we still have to learn. An influential systematic review sponsored by the Agency for Healthcare Research and Quality (AHRQ) identified more than 40 definitions of care coordination. The authors concluded with the following general definition: Care coordination is the deliberate organization of patient care activities between two or more participants (including the patient) involved in a patient’s care to facilitate the appropriate delivery of health care services. Organizing care involves the marshalling of personnel and other resources needed to carry out all required patient care activities and is often managed by the exchange of information among participants responsible for different aspects of care. [1] At the policy level, there is considerable concern about high-need, high-cost patients, who use more health care resources, and require more coordination to improve appropriate utilization and quality outcomes. An evaluation of the Centers for Medicare and Medicaid Services’ (CMS) Medicare Coordinated Care Demonstration projects, using nurse contact with patients diagnosed with congestive heart failure, coronary artery disease, and diabetes, yielded no Medicare savings [2]. In this issue, O’Brien et al. [3] reviewed the Engagement through CARInG Framework that is designed to increase communication and actions to improve health, build trusting relationships with Intensive Care Coordination Programs staff, and develop patients’ insights and goal-setting abilities. This model has the strong potential to guide interventions that aim to enhance self-care and improve care coordination for high-risk patients with complex medical, behavioral, and social needs. By contrast, Weppner et al. [4] found that a novel interprofessional team was associated with more appropriate use of primary care team members, as well as urgent care and ED visits for high-need, high-cost patients in the Veterans Affairs (VA), but the team did not have a significant impact on those with poorly controlled hypertension or diabetes. The U.S. Department of Health and Human Services has advanced initiatives designed to improve payment for the coordination of care under the Affordable Care Act, including CMS coverage of care coordination for Medicare recipients with chronic illnesses. Furthermore, health care leaders, such as those in the VA who have commented for this issue, have described intervention models to better address care coordination, and to distinguish care coordination from care management and case management. The National Cancer Institute (NCI), now a major supporter of health care delivery research, has a renewed interest in creating more knowledge to better understand care coordination approaches. Fundamental to the science of care coordination are explanatory conceptual models with which the construct of care coordination, as well as operational measures of the term, can be understood. This special issue of Translational Behavioral Medicine offers several models undergirding care coordination; the Engagement through CARInG Framework [3], planning theory of coordination [5], social ecological model [6, 7], Andersen health care utilization model [8], and chronic care model [4, 9–11], as well as both novel [12] and well-established [13] measures that operationalize care coordination. Although the authors seem to have arrived at a consensus that effectively coordinated care depends upon information exchange and communication among patients, physicians, family members, and support staff [1, 14], many permutations exist in the types of exchange processes, how the processes of exchange and communication are managed, and what information is shared, by whom. As noted in many of the papers [3, 7, 10, 15–18], few patients are able to manage this complex care environment alone; even health care providers are sometimes adrift in the fragmented U.S. health care delivery system. Support can come from both within and outside the health care system. At the patient level, this support can include family or other social supports; at the provider level, partnerships and linkages with community organizations can be critical. Care coordination clearly applies across a broad range of clinical problems and scenarios. The authors here describe care coordination across several chronic diseases, including cancer [7, 13, 15, 19, 20], chronic kidney disease [11], and diabetes [16]. Care coordination can also be important among healthy populations, such as pregnant women Veterans [17]. In any scenario, the complex patient experience of chronic disease is difficult to manage when the health care delivery system is neither integrated nor organized in its design. This finding was implicit across most studies and explicit in the one study that identified success factors for cancer care coordination outside the USA, in Australia [7], including the improvement of coordinated care from first presentation to diagnosis. Two studies explored the use of the patient centered medical home (PCMH) model for care coordination, addressing the impact of social and clinical factors on the use of a PCMH for adult chronic hemodialysis (CHD) patients [11], and as a site for the delivery of cancer survivorship care [20]. Health care system coordination involves both inter- and intraorganizational coordination. Four of the studies included in this special issue were conducted within the VA health care system [3, 4, 10, 17]. The VA defines care coordination as an attribute of responsible whole health care delivery that should be carried out by all health care providers. Several formal approaches to organizational coordination are well established: (i) interorganizational boundary spanners, such as patient navigators or case managers, who integrate the work of other people; (ii) team meetings (e.g., multidisciplinary care conferences) that facilitate interaction among participants in a work process; and (iii) work routines, like telehealth, which reduce variation in the interactions among participants [22–29]. A fourth, more spontaneous, form of coordination is relational coordination, or “mutual adjustment,” which refers to strong relationships that enable members of the health care team to embrace their connections with one another, in turn, allowing them to more effectively coordinate the work processes in which they are engaged [30, 31]. Two studies [12, 16] compared the varying perspectives of care coordination between health care providers and patients: One explored the differing perceptions of the health care provider and patients with type 2 diabetes, whereas the other study explored differences between surgeons and patients. For patients who are diagnosed with type 2 diabetes, a community survey found that health care providers overestimated their patients’ use of community resources and underestimated their patients’ degree of social support [16]. Brooke et al. [12], using focus group data, suggested that better informatics support, communication, and information sharing between surgeons and patients could ease surgical transitions. In practice, authors explored a wide range of approaches, or interventions, directed at care coordination. In these studies, a variety of study endpoints were assessed, including the intervention’s feasibility, uptake, and effect. Grant et al. [32], in their qualitative review of intervention approaches in gynecologic oncology across the USA and seven Western countries, found that effective interventions were generally channeled through multidisciplinary teams, patient navigators, scheduled follow-up, and co-located services. Telehealth has emerged as another scalable approach to care coordination, applicable to a number of clinical situations, including rural patients who are diagnosed with cancer [33]. Cordasco et al. [17] found that implementation of a telephone-based care coordination program for pregnant Veterans was feasible, with high uptake. Ganz et al. [10] described a process for developing an evidence-based, usable web-based tool kit for improving care coordination in primary care, with a special emphasis upon providing support for patients. Weppner et al. [4] addressed the impact of multidisciplinary or interprofessional teams on care coordination processes. Future research may focus on the optimal characteristics of multidisciplinary teams for coordinated care, including how teams can have greater and easier access to high-quality information, who should participate in the team or network of teams, how team members can optimally communicate, and how the patient’s voice can best be heard [34, 35]. Some work along these lines is beginning to be implemented in practice through American Society of Clinical Oncology’s Quality Training Program, and the Institute for Healthcare Improvement’s Multidisciplinary Rounds, but empirical research is needed to accompany these efforts so as to better understand their outcomes. Patient navigation programs are a common coordination intervention approach in cancer, particularly among those diagnosed with breast cancer. In this special issue, two papers explored the impact of patient navigation early in the cancer continuum, on clinical trials recruitment [15, 19], and genetic testing among those with a positive screening test [19]. Valverde et al. [18] described the findings from a respondent-driven sample survey of patient navigator characteristics and job tasks prior to the implementation of the Affordable Care Act. Of late, patient navigation approaches have been included as a standard by the Commission on Cancer, as well as one care delivery selection criterion by the Blue Cross Blue Shield Association (i.e., accessibility to timely, multidisciplinary, coordinated cancer care). Professional standards of practice have been developed for social work navigators (http://www.aosw.org/professional-development/standards-of-practice/), and core competencies for oncology nurse navigators (www.ons.org [36]). Several professional navigator certificate programs have been created; also, a number of local navigator supervision and training programs, particularly for lay navigators, have been developed [37]. As patient navigation becomes increasingly professionalized, further rigorous assessments of harmonized patient navigation programs should be done to establish their value. Ideally, such evaluations would involve programs staffed by navigators who meet established competencies and administer valid measures, and be conducted across multiple systems. Reimbursement for patient navigation holds the potential for creating local, regional, and/or national navigation networks that could enrich care coordination at the population level. In a systematic review and meta-analysis of 52 studies of cancer care coordination across the USA, Sheinfeld Gorin et al. [33] found that coordination approaches led to improvements in 81% of outcomes across the continuum of care, including screening and end-of-life care. In this special issue, the majority of studies measured utilization and processes of care, including the number of visits to primary care physicians [11, 21], number of visits to specialist physicians [21], the timing of those visits across the cancer care continuum [13], and follow through to genetic counseling and testing among Lynch Syndrome screen-positive cases [19]. Only two studies assessed clinical outcomes, namely, HgbA1C results [38] and the uptake of recommended preventive tests, that is, influenza vaccination [21]. To further advance the study of care coordination—and to ground emerging policy and reimbursement efforts—we recommend the systematic, rigorous, and widespread collection of other measures, including patient experiences and satisfaction with care, reducing care delays, advance directive planning, symptom management, and hospice admissions [33, 37]. These measures should be collected across both health conditions and delivery systems. Beyond the methods applied in these studies to measure the process and impact of care coordination, studies applied or adapted designs involving quantitative (quasi-experimental design [16], prospective cohort design [4], and retrospective case series [19]), qualitative [3, 5] (key informant interviews, focus groups [12]), as well as quality improvement (Plan-Do-Study-Act [17]), and mixed methods [7, 18, 20] (comparative case studies, stakeholder submissions, and Nominal Group Technique). Three studies relied upon a population database and general online surveys, respectively, SEER-Medicare [13], Medicaid claims [39], and the pooled 2011–2014 Medical Expenditure Panel Survey [21]. One study performed thematic analyses of online discussion boards from the American Cancer Society Cancer Survivors Network [5]. For future research in care coordination, more and varied use of population databases could lay the foundation for multisite and national policy approaches. Likewise, the continued development and validation of relevant measures of care coordination could increase the generalizability of findings. Methodologically, the rigorous causal inference of randomized controlled trials (RCT) continues to serve as the gold standard for the effectiveness of different interventions to coordinate care, and both researchers and health care system leaders should remain open to opportunities to perform pragmatic RCTs. Alongside multimethod and qualitative, comparative analysis [40], comparative effectiveness research studies of care coordination across varied chronic diseases can also provide evidence for new approaches relative to the extant models. Factorial and fractional factorial designs (with MOST and SMART as examples [40–48]) can lead to a better understanding of the type, timing, and intensity of the key components of care coordination, as well as which are most efficient. Implementation science approaches can further help to define the contexts within which these components could best be spread and sustained. Health information technology has the potential for care coordination. At present, health care documentation and medical orders are organized through the electronic health record (EHR). As demonstrated by van Eeghen et al. [38], when used proactively, the EHR can be used to create patient registries, generate follow-up communication with patients, and track processes and outcomes of interest to the practice. As clinical practice increasingly emphasizes population management over event-based encounters, more opportunities for coordination may emerge. Coordination among health care providers is another vital function of the EHR, and health information exchanges provide a service framework wherein EHR data can be shared across health care delivery systems. Although shared documentation is a step in the right direction, decision support tools embedded in the EHR that promote effective asynchronous and synchronous communication need further development [49]. From the patient perspective, the possibilities for coordination using online tools are expanding at a rapid pace, as the potential uses of online technologies and social media platforms multiply. The study by Strekalova et al. [5] highlights the rich and deep exchange of information that can occur within an online patient support forum, and how the lessons learned about coordination virtually might inform the care delivered in the physical health care setting. An extremely broad range of stakeholders are considered relevant to chronic care coordination, including patients, caregivers, friends, colleagues, employers, and community organizations [16]. How to coordinate this very large number of actors both efficiently and meaningfully remains an ongoing challenge. As health care providers and organizations increasingly use social media, personal boundaries of privacy and confidentiality should be respected, even while they are being re-evaluated by the participants. Despite their promise, the implementation in care coordination of novel medical devices and informatics approaches, as well as social media, has not yet had a large reach. For example, wearable sensors with GPS to track clinical workflow and patient risk factors, and home-based sensors to detect changes in biologic values (such as electrocardiograms or blood oxygen saturation) signaling a need for intervention, are future areas for care coordination research. Similarly, multiple modifications to the EHR to capture and track navigator and multidisciplinary team metrics have only been reported anecdotally [37]; informatics tools to facilitate more rapid application of these metrics in clinical care and research [50] have been developed, but uptake is limited. The use of social media, in online cancer discussion groups, however, could identify emerging needs for care coordination as well as enable survivors to accumulate the social capital necessary for health self-management and self-efficacy that enable patient-directed care coordination [20]. Although no studies in this issue directly examined the costs of care, future advances in care coordination in practice will likely require additional economic incentives beyond current reimbursement structures, for example, the Accountable Care Organizations or Medicare bundled payment models. Recently, Rocque et al. [51] reported the findings from a prospective cohort study of a lay navigation program that was implemented within a multisite community cancer health care network among older Medicare beneficiaries who were diagnosed with cancer. Using Medicare claims and cancer registry data, and comparing the lay navigation group with a matched control, the mean total costs declined significantly, by $781.29 (SE = $45.77) per quarter per navigated patient, for an estimated $19 million decline per year. Similar business cases may be constructed for other approaches to care coordination, particularly for high-need, high-cost patients Nearly all of the papers in this issue addressed health disparities, whether in the aims of the care coordination programs that were studied, the populations recruited, or the impact of the findings. Although care coordination is needed by all, given resource constraints in both integrated and free-standing health care systems, care coordination approaches are often directed first at those not only with greater disease acuity, but with social determinants that place them at risk of poor health outcomes [52]. For example, Jetty et al. [21] found that those individuals with higher deductible insurance plans made fewer visits to primary care physicians, thereby reducing the uptake of screening tests, preventive care, and immunizations. Similarly, Chukwudozie et al. [11] found that among those with chronic kidney disease, having a primary care provider and fewer comorbidities, as well as fewer stressful life events, more available transportation, and social support led to more use of the PCMH. A recent influential article suggested that, while awaiting the evidence, coordinated care itself is a worthwhile undertaking—a way of enhancing patients’ experiences and improving outcomes. These goals may be met by care coordination even in the absence of reduced utilization or cost savings [53]. As the multifaceted, multidimensional, complex health care system is reconfigured in the future, the system should be designed with the patient at the center. References 1. McDonald K , Schultz E , Albin L et al. Care Coordination Atlas Version 3 . Rockville, MD : Agency for Healthcare Research and Quality ; 2010 . 2. Peikes D , Chen A , Schore J , Brown R . Effects of care coordination on hospitalization, quality of care, and health care expenditures among Medicare beneficiaries: 15 randomized trials . JAMA . 2009 ; 301 ( 6 ): 603 – 618 . Google Scholar CrossRef Search ADS PubMed 3. O’Brien CW , Breland JY , Slightam C , Nevedal A , Zulman D . Engaging high-risk patients in intensive care coordination programs: the engagement through CARInG framework . Transl Behav Med . 2018 . This issue. 4. Weppner WG , Davis K , Tivis R et al. Impact of a complex chronic care patient case conference on quality and utilization . Transl Behav Med . 2018 . This issue. 5. Strekalova YA , Hawkins KE , Drusbosky L , Cogle C . Using social media to assess care coordination goals and plans for leukemia patients and survivors . Transl Behav Med . 2018 . This issue. 6. Stokols D . Establishing and maintaining healthy environments. Toward a social ecology of health promotion . Am Psychol . 1992 ; 47 ( 1 ): 6 – 22 . Google Scholar CrossRef Search ADS PubMed 7. 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Differences in perspectives regarding diabetes management between health care providers and patients . Transl Behav Med . 2018 . This issue. 17. Cordasco KM , Katzburg JR , Katon JG , Zephyrin LC , Chrystal JG , Yano EM . Care coordination for pregnant veterans: VA’s maternity care coordinator telephone care program . Transl Behav Med . 2018 . This issue. 18. Valverde PA , Calhoun E , Whitley E , Esparza A , Wells KJ , Risendal BC . The early dissemination of patient navigation interventions: results of a respondent-driven sample survey . Transl Behav Med . 2018 . This issue. 19. Miesfeldt S , Feero WG , Lucas FL , Rasmussen K . Association of patient navigation with care coordination in a Lynch Syndrome screening program . Transl Behav Med . 2018 . This issue. 20. Tsui J , Hudson SV , Rubinstein EB et al. A mixed-methods analysis of the capacity of the patient centered medical home to implement care coordination services for cancer survivors . Transl Behav Med . 2018 . 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Organizations in Action: Social Science Bases of Administrative Theory . New York : McGraw-Hill ; 1967 . 29. Van de Ven A , Delbecq A , Koenig R . Determinants of coordination modes within organizations . Amer. Sociologic Rev . 1976 ; 41 ; 322 – 338 . Google Scholar CrossRef Search ADS 30. Gittell JH . Coordinating mechanisms in care provider groups: relational coordination as a mediator and input uncertainty as a moderator of performance effects . Management Sci . 2002 ; 48 : 1408 – 1426 . Google Scholar CrossRef Search ADS 31. Gittell JH , Fairfield KM , Bierbaum B et al. Impact of relational coordination on quality of care, postoperative pain and functioning, and length of stay: a nine-hospital study of surgical patients . Med Care . 2000 ; 38 ( 8 ): 807 – 819 . Google Scholar CrossRef Search ADS PubMed 32. Grant S , Motala A , Chrystal JG et al. Coordinating care for women with gynecologic malignancies: a rapid systematic review . Transl Behav Med . 2018 . This issue. 33. 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Behav Ther . 2017 ;48(4):567–580. doi: 10.1016/j.beth.2016.12.005 45. Brown CH , Curran G , Palinkas LA et al. An overview of research and evaluation designs for implementation designs for dissemination and implementation . American Review Of Public Health . 2017 ;20(38): 1–22. doi: 10.1146/annurev-publhealth-031816-044215 46. Schlam TR , Fiore MC , Smith SS et al. Comparative effectiveness of intervention components for producing long-term abstinence from smoking: a factorial screening experiment . Addiction . 2016 ; 111 ( 1 ): 142 – 55 . doi: 10.1111/add.13153 . Google Scholar CrossRef Search ADS PubMed 47. Murray E , Hekler EB , Andersson G et al. Evaluating digital health interventions . Am J Prev Med . 2016 ; 51 ( 5 ): 843 – 851 . doi: 10.1016/j.amepre.2016.06.008 . Google Scholar CrossRef Search ADS PubMed 48. Buscemi J , Janke AE , Kugler KC et al. Increasing the public health impact of evidence-based interventions in behavioral medicine: new approaches and future directions . J Behav Med . 2017 ; 40 ( 1 ): 203 – 213 . Google Scholar CrossRef Search ADS PubMed 49. O’Malley AS , Reschovsky JD . Referral and consultation communication between primary care and specialist physicians: finding common ground . Arch Intern Med . 2011 ; 171 ( 1 ): 56 – 65 . Google Scholar CrossRef Search ADS PubMed 50. Harris PA , Taylor R , Thielke R , Payne J , Gonzalez N , Conde JG . Research electronic data capture (REDCap)—a metadata-driven methodology and workflow process for providing translational research informatics support . J Biomed Inform . 2009 ; 42 ( 2 ): 377 – 381 . Google Scholar CrossRef Search ADS PubMed 51. Rocque GB , Pisu M , Jackson BE et al. ; Partridge EE for the Patient Care Connect Group . Resource use and medicare costs during lay navigation for geriatric patients with cancer . JAMA Oncol . 2017 ; 3 ( 6 ): 817 – 825 . Google Scholar CrossRef Search ADS PubMed 52. Gorin SS , Badr H , Krebs P , Prabhu Das I . Multilevel interventions and racial/ethnic health disparities . J Natl Cancer Inst Monogr . 2012 ; 2012 ( 44 ): 100 – 111 . Google Scholar CrossRef Search ADS PubMed 53. McWilliams JM . Cost containment and the tale of care coordination . N Engl J Med . 2016 ; 375 ( 23 ): 2218 – 2220 . Google Scholar CrossRef Search ADS PubMed © The Author(s) 2018. Published by Oxford University Press on behalf of the Society of Behavioral Medicine. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com. This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/about_us/legal/notices) http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Translational Behavioral Medicine Oxford University Press

The coordination of chronic care: an introduction

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Abstract

In this special issue, we are sharing a diverse group of papers that together frame the evolving field of care coordination. Care coordination is a key component of the patient experience and a hallmark of high-quality patient care in health care systems. In these papers, we explore models of effective care coordination in policy, research, and practice. These papers both report what we know and clarify what we still have to learn. An influential systematic review sponsored by the Agency for Healthcare Research and Quality (AHRQ) identified more than 40 definitions of care coordination. The authors concluded with the following general definition: Care coordination is the deliberate organization of patient care activities between two or more participants (including the patient) involved in a patient’s care to facilitate the appropriate delivery of health care services. Organizing care involves the marshalling of personnel and other resources needed to carry out all required patient care activities and is often managed by the exchange of information among participants responsible for different aspects of care. [1] At the policy level, there is considerable concern about high-need, high-cost patients, who use more health care resources, and require more coordination to improve appropriate utilization and quality outcomes. An evaluation of the Centers for Medicare and Medicaid Services’ (CMS) Medicare Coordinated Care Demonstration projects, using nurse contact with patients diagnosed with congestive heart failure, coronary artery disease, and diabetes, yielded no Medicare savings [2]. In this issue, O’Brien et al. [3] reviewed the Engagement through CARInG Framework that is designed to increase communication and actions to improve health, build trusting relationships with Intensive Care Coordination Programs staff, and develop patients’ insights and goal-setting abilities. This model has the strong potential to guide interventions that aim to enhance self-care and improve care coordination for high-risk patients with complex medical, behavioral, and social needs. By contrast, Weppner et al. [4] found that a novel interprofessional team was associated with more appropriate use of primary care team members, as well as urgent care and ED visits for high-need, high-cost patients in the Veterans Affairs (VA), but the team did not have a significant impact on those with poorly controlled hypertension or diabetes. The U.S. Department of Health and Human Services has advanced initiatives designed to improve payment for the coordination of care under the Affordable Care Act, including CMS coverage of care coordination for Medicare recipients with chronic illnesses. Furthermore, health care leaders, such as those in the VA who have commented for this issue, have described intervention models to better address care coordination, and to distinguish care coordination from care management and case management. The National Cancer Institute (NCI), now a major supporter of health care delivery research, has a renewed interest in creating more knowledge to better understand care coordination approaches. Fundamental to the science of care coordination are explanatory conceptual models with which the construct of care coordination, as well as operational measures of the term, can be understood. This special issue of Translational Behavioral Medicine offers several models undergirding care coordination; the Engagement through CARInG Framework [3], planning theory of coordination [5], social ecological model [6, 7], Andersen health care utilization model [8], and chronic care model [4, 9–11], as well as both novel [12] and well-established [13] measures that operationalize care coordination. Although the authors seem to have arrived at a consensus that effectively coordinated care depends upon information exchange and communication among patients, physicians, family members, and support staff [1, 14], many permutations exist in the types of exchange processes, how the processes of exchange and communication are managed, and what information is shared, by whom. As noted in many of the papers [3, 7, 10, 15–18], few patients are able to manage this complex care environment alone; even health care providers are sometimes adrift in the fragmented U.S. health care delivery system. Support can come from both within and outside the health care system. At the patient level, this support can include family or other social supports; at the provider level, partnerships and linkages with community organizations can be critical. Care coordination clearly applies across a broad range of clinical problems and scenarios. The authors here describe care coordination across several chronic diseases, including cancer [7, 13, 15, 19, 20], chronic kidney disease [11], and diabetes [16]. Care coordination can also be important among healthy populations, such as pregnant women Veterans [17]. In any scenario, the complex patient experience of chronic disease is difficult to manage when the health care delivery system is neither integrated nor organized in its design. This finding was implicit across most studies and explicit in the one study that identified success factors for cancer care coordination outside the USA, in Australia [7], including the improvement of coordinated care from first presentation to diagnosis. Two studies explored the use of the patient centered medical home (PCMH) model for care coordination, addressing the impact of social and clinical factors on the use of a PCMH for adult chronic hemodialysis (CHD) patients [11], and as a site for the delivery of cancer survivorship care [20]. Health care system coordination involves both inter- and intraorganizational coordination. Four of the studies included in this special issue were conducted within the VA health care system [3, 4, 10, 17]. The VA defines care coordination as an attribute of responsible whole health care delivery that should be carried out by all health care providers. Several formal approaches to organizational coordination are well established: (i) interorganizational boundary spanners, such as patient navigators or case managers, who integrate the work of other people; (ii) team meetings (e.g., multidisciplinary care conferences) that facilitate interaction among participants in a work process; and (iii) work routines, like telehealth, which reduce variation in the interactions among participants [22–29]. A fourth, more spontaneous, form of coordination is relational coordination, or “mutual adjustment,” which refers to strong relationships that enable members of the health care team to embrace their connections with one another, in turn, allowing them to more effectively coordinate the work processes in which they are engaged [30, 31]. Two studies [12, 16] compared the varying perspectives of care coordination between health care providers and patients: One explored the differing perceptions of the health care provider and patients with type 2 diabetes, whereas the other study explored differences between surgeons and patients. For patients who are diagnosed with type 2 diabetes, a community survey found that health care providers overestimated their patients’ use of community resources and underestimated their patients’ degree of social support [16]. Brooke et al. [12], using focus group data, suggested that better informatics support, communication, and information sharing between surgeons and patients could ease surgical transitions. In practice, authors explored a wide range of approaches, or interventions, directed at care coordination. In these studies, a variety of study endpoints were assessed, including the intervention’s feasibility, uptake, and effect. Grant et al. [32], in their qualitative review of intervention approaches in gynecologic oncology across the USA and seven Western countries, found that effective interventions were generally channeled through multidisciplinary teams, patient navigators, scheduled follow-up, and co-located services. Telehealth has emerged as another scalable approach to care coordination, applicable to a number of clinical situations, including rural patients who are diagnosed with cancer [33]. Cordasco et al. [17] found that implementation of a telephone-based care coordination program for pregnant Veterans was feasible, with high uptake. Ganz et al. [10] described a process for developing an evidence-based, usable web-based tool kit for improving care coordination in primary care, with a special emphasis upon providing support for patients. Weppner et al. [4] addressed the impact of multidisciplinary or interprofessional teams on care coordination processes. Future research may focus on the optimal characteristics of multidisciplinary teams for coordinated care, including how teams can have greater and easier access to high-quality information, who should participate in the team or network of teams, how team members can optimally communicate, and how the patient’s voice can best be heard [34, 35]. Some work along these lines is beginning to be implemented in practice through American Society of Clinical Oncology’s Quality Training Program, and the Institute for Healthcare Improvement’s Multidisciplinary Rounds, but empirical research is needed to accompany these efforts so as to better understand their outcomes. Patient navigation programs are a common coordination intervention approach in cancer, particularly among those diagnosed with breast cancer. In this special issue, two papers explored the impact of patient navigation early in the cancer continuum, on clinical trials recruitment [15, 19], and genetic testing among those with a positive screening test [19]. Valverde et al. [18] described the findings from a respondent-driven sample survey of patient navigator characteristics and job tasks prior to the implementation of the Affordable Care Act. Of late, patient navigation approaches have been included as a standard by the Commission on Cancer, as well as one care delivery selection criterion by the Blue Cross Blue Shield Association (i.e., accessibility to timely, multidisciplinary, coordinated cancer care). Professional standards of practice have been developed for social work navigators (http://www.aosw.org/professional-development/standards-of-practice/), and core competencies for oncology nurse navigators (www.ons.org [36]). Several professional navigator certificate programs have been created; also, a number of local navigator supervision and training programs, particularly for lay navigators, have been developed [37]. As patient navigation becomes increasingly professionalized, further rigorous assessments of harmonized patient navigation programs should be done to establish their value. Ideally, such evaluations would involve programs staffed by navigators who meet established competencies and administer valid measures, and be conducted across multiple systems. Reimbursement for patient navigation holds the potential for creating local, regional, and/or national navigation networks that could enrich care coordination at the population level. In a systematic review and meta-analysis of 52 studies of cancer care coordination across the USA, Sheinfeld Gorin et al. [33] found that coordination approaches led to improvements in 81% of outcomes across the continuum of care, including screening and end-of-life care. In this special issue, the majority of studies measured utilization and processes of care, including the number of visits to primary care physicians [11, 21], number of visits to specialist physicians [21], the timing of those visits across the cancer care continuum [13], and follow through to genetic counseling and testing among Lynch Syndrome screen-positive cases [19]. Only two studies assessed clinical outcomes, namely, HgbA1C results [38] and the uptake of recommended preventive tests, that is, influenza vaccination [21]. To further advance the study of care coordination—and to ground emerging policy and reimbursement efforts—we recommend the systematic, rigorous, and widespread collection of other measures, including patient experiences and satisfaction with care, reducing care delays, advance directive planning, symptom management, and hospice admissions [33, 37]. These measures should be collected across both health conditions and delivery systems. Beyond the methods applied in these studies to measure the process and impact of care coordination, studies applied or adapted designs involving quantitative (quasi-experimental design [16], prospective cohort design [4], and retrospective case series [19]), qualitative [3, 5] (key informant interviews, focus groups [12]), as well as quality improvement (Plan-Do-Study-Act [17]), and mixed methods [7, 18, 20] (comparative case studies, stakeholder submissions, and Nominal Group Technique). Three studies relied upon a population database and general online surveys, respectively, SEER-Medicare [13], Medicaid claims [39], and the pooled 2011–2014 Medical Expenditure Panel Survey [21]. One study performed thematic analyses of online discussion boards from the American Cancer Society Cancer Survivors Network [5]. For future research in care coordination, more and varied use of population databases could lay the foundation for multisite and national policy approaches. Likewise, the continued development and validation of relevant measures of care coordination could increase the generalizability of findings. Methodologically, the rigorous causal inference of randomized controlled trials (RCT) continues to serve as the gold standard for the effectiveness of different interventions to coordinate care, and both researchers and health care system leaders should remain open to opportunities to perform pragmatic RCTs. Alongside multimethod and qualitative, comparative analysis [40], comparative effectiveness research studies of care coordination across varied chronic diseases can also provide evidence for new approaches relative to the extant models. Factorial and fractional factorial designs (with MOST and SMART as examples [40–48]) can lead to a better understanding of the type, timing, and intensity of the key components of care coordination, as well as which are most efficient. Implementation science approaches can further help to define the contexts within which these components could best be spread and sustained. Health information technology has the potential for care coordination. At present, health care documentation and medical orders are organized through the electronic health record (EHR). As demonstrated by van Eeghen et al. [38], when used proactively, the EHR can be used to create patient registries, generate follow-up communication with patients, and track processes and outcomes of interest to the practice. As clinical practice increasingly emphasizes population management over event-based encounters, more opportunities for coordination may emerge. Coordination among health care providers is another vital function of the EHR, and health information exchanges provide a service framework wherein EHR data can be shared across health care delivery systems. Although shared documentation is a step in the right direction, decision support tools embedded in the EHR that promote effective asynchronous and synchronous communication need further development [49]. From the patient perspective, the possibilities for coordination using online tools are expanding at a rapid pace, as the potential uses of online technologies and social media platforms multiply. The study by Strekalova et al. [5] highlights the rich and deep exchange of information that can occur within an online patient support forum, and how the lessons learned about coordination virtually might inform the care delivered in the physical health care setting. An extremely broad range of stakeholders are considered relevant to chronic care coordination, including patients, caregivers, friends, colleagues, employers, and community organizations [16]. How to coordinate this very large number of actors both efficiently and meaningfully remains an ongoing challenge. As health care providers and organizations increasingly use social media, personal boundaries of privacy and confidentiality should be respected, even while they are being re-evaluated by the participants. Despite their promise, the implementation in care coordination of novel medical devices and informatics approaches, as well as social media, has not yet had a large reach. For example, wearable sensors with GPS to track clinical workflow and patient risk factors, and home-based sensors to detect changes in biologic values (such as electrocardiograms or blood oxygen saturation) signaling a need for intervention, are future areas for care coordination research. Similarly, multiple modifications to the EHR to capture and track navigator and multidisciplinary team metrics have only been reported anecdotally [37]; informatics tools to facilitate more rapid application of these metrics in clinical care and research [50] have been developed, but uptake is limited. The use of social media, in online cancer discussion groups, however, could identify emerging needs for care coordination as well as enable survivors to accumulate the social capital necessary for health self-management and self-efficacy that enable patient-directed care coordination [20]. Although no studies in this issue directly examined the costs of care, future advances in care coordination in practice will likely require additional economic incentives beyond current reimbursement structures, for example, the Accountable Care Organizations or Medicare bundled payment models. Recently, Rocque et al. [51] reported the findings from a prospective cohort study of a lay navigation program that was implemented within a multisite community cancer health care network among older Medicare beneficiaries who were diagnosed with cancer. Using Medicare claims and cancer registry data, and comparing the lay navigation group with a matched control, the mean total costs declined significantly, by $781.29 (SE = $45.77) per quarter per navigated patient, for an estimated $19 million decline per year. Similar business cases may be constructed for other approaches to care coordination, particularly for high-need, high-cost patients Nearly all of the papers in this issue addressed health disparities, whether in the aims of the care coordination programs that were studied, the populations recruited, or the impact of the findings. Although care coordination is needed by all, given resource constraints in both integrated and free-standing health care systems, care coordination approaches are often directed first at those not only with greater disease acuity, but with social determinants that place them at risk of poor health outcomes [52]. For example, Jetty et al. [21] found that those individuals with higher deductible insurance plans made fewer visits to primary care physicians, thereby reducing the uptake of screening tests, preventive care, and immunizations. Similarly, Chukwudozie et al. 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Translational Behavioral MedicineOxford University Press

Published: May 23, 2018

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