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Engaging high-risk patients in intensive care coordination programs: the engagement through CARInG framework

Engaging high-risk patients in intensive care coordination programs: the engagement through... School of Medicine, Stanford Implications University, Stanford, CA, USA Intensive outpatient care programs (IOCPs) have shown prom- Practice: The Engagement Through CARInG Center for Innovation to ise for high-risk patients who account for disproportionate acute Implementation, VA Palo Alto Framework can guide intensive care coordination care utilization and costs. These programs typically address Healthcare System, Menlo Park, programs that aim to engage high-risk patients with medical, behavioral, and social needs through intensive case CA, USA complex medical, behavioral, and social needs. management, health care navigation, coordination, and access Department of Psychiatry and to a range of social and community services. However, the Behavioral Sciences, Stanford value of these programs is often limited by patient engagement University School of Medicine, challenges (i.e., difficulty engaging patients in self-care, deci- Stanford, CA, USA Policy: Policy to support engagement of com- sion-making, and follow-up with recommended services). The Division of Primary Care and plex, high-risk patients should: (i) address struc- purpose of this study was to develop a framework for engaging Population Health, Stanford tural and regulatory barriers to team-based care, University, Stanford, CA, USA high-risk patients with complex medical, behavioral, and social and (ii) focus on payment structures and perform- needs in IOCPs. We conducted a qualitative study with 20 ance measures that reward patient-centered care Correspondence to: DM Zulman, leaders and clinicians (e.g., physicians, nurses, psychologists, [email protected] that is aligned with individuals’ goals. case workers) from 12 IOCPs affiliated with diverse settings Cite this as: TBM 2018;8:351–356 (academic hospitals, county healthcare systems, Veterans doi: 10.1093/tbm/ibx004 Published by Oxford University Press Affairs facilities, community health centers, and private health Research: Future research should evaluate the on behalf of the Society of Behavioral systems). After completing a brief survey, participants were Medicine 2018. This work is written by effectiveness of specific patient engagement asked to describe how their program conceptualizes patient (a) US Government employees(s) and strategies within the domains of the CARInG engagement and to describe characteristics of highly engaged is in the public domain in the US. Framework. patients. We used conventional content analysis methods to analyze qualitative data. Three domains of engagement were identified and are summarized in the Engagement Through CARInG Framework: Communication and actions to improve health; Relationships built on trust in IOCP staff; and Insight coordination, enhanced access to a team of clini- and goal-setting ability. Qualitative findings illustrate the spec - cians (e.g., through extended hours and home visits), trum and interrelatedness of these domains. The Engagement and a wide range of social and community services Through CARInG Framework can guide interventions that aim to [11–14]. enhance self-care and improve care coordination for high-risk Evaluations of IOCPs and other case management patients with complex medical, behavioral, and social needs. approaches have demonstrated increased patient satisfaction, but there is less consistent evidence for Keywords improved clinical outcomes and reduced costs [11, Care coordination, Primary care, Multiple chronic 15–17]. During a 2013 IOCP summit, innovators and conditions, Patient care management experts determined that inconsistent patient engage- ment in these programs is a major barrier to achiev- ing the Triple Aim of enhanced patient experience, INTRODUCTION improved health, and reduced costs [14]. Patient Health care spending in the USA is concentrated engagement has been conceptualized in myriad among a small minority of patients—50% of expendi- ways in the medical literature, but generally refers to tures are attributable to just 5% of patients [1–4]. the degree to which patients participate in health-re- The convergence of multiple chronic conditions, lated activities, partner with healthcare providers co-morbid mental illness, and social stressors in in clinical decision-making, and interact with the many of these high-risk patients contributes to frag- healthcare system [18–23]. This definition of engage- mented care, frequent emergency department visits, ment, however, may not be relevant for patients with and hospitalizations [3, 5–7]. In recent years, inten- high-risk profiles who often require unconventional sive outpatient care programs (IOCPs) have been approaches and interventions. widely implemented to improve chronic care coord- To address this gap and to advance understanding ination and prevent health deteriorations and costly of patient engagement in intensive care coordination service use [8–11]. Although designs vary, IOCPs programs, we conducted a qualitative study with typically offer intensive case management and care TBM page 351 of 356 Downloaded from https://academic.oup.com/tbm/article/8/3/351/5001925 by DeepDyve user on 19 July 2022 ORIGINAL RESEARCH representatives from IOCPs serving patients with to support data management, coding, and cod- complex medical, social, and behavioral needs. Our ing comparisons (ATLAS.ti7, Scientific Software objective was to synthesize the expertise of clinicians Development, Berlin, Germany). Two authors and program leaders, and to develop an engage- (C.W.O. and C.S.) reviewed the text from five ment framework to assist programs in improving randomly selected transcripts to develop a prelim- their care for high-risk patients. inary code book based on the similarities and dif- ferences in how participants described engagement. The interdisciplinary research team met to refine MATERIALS AND METHODS the preliminary code book and to discuss applic- Study recruitment ability, consistency, and validity of the codes. The We used maximum variation purposive sampling revised codes included domains that comprised how [24] to identify IOCPs in Northern California that respondents defined engagement, such as trust and were diverse in regard to setting, affiliated health- patient insight. Using the revised code book, two care system (e.g., academic, community, Veterans authors (C.W.O. and C.S.) independently coded Affairs), payer, and target patient population (e.g., three additional transcripts and then reviewed the employed individuals, underserved patients, vet- coded transcripts together for consistency and to erans). Eligible IOCPs had a mission to offer care discuss discrepancy in the coding [27]. After achiev- coordination and enhanced services for high-risk ing coding consistency, the remaining transcripts patients. We first approached attendees of a 2014 were coded and any remaining discrepancies were regional meeting on high-risk patients, and sup- resolved by discussion with a third author (J.Y.B.). plemented this list by snowball sampling [25]. We Once coding was complete, the research team contacted clinical staff or program leaders from 18 reviewed the quotations for each code and then IOCPs via e-mail, with a 67% response rate. When grouped the codes into major domains, identifying possible, we asked the initial contact to recommend cross-cutting themes about the domains’ properties another program representative with a different role and their relationships. The major domains were to participate in a second interview. used to develop a working framework for patient engagement. Interview procedure Guided by a qualitative expert on the research team RESULTS (A.N.), we developed a semi-structured interview Participant and program characteristics guide based on a review of the patient engagement Participants included 20 IOCP staff members from literature. The framework presented in this paper 12 different programs; 15 (75%) were clinicians and derives from responses to two core interview ques- 12 (60%) were program leaders and administrators. tions: (i) “What does patient engagement mean to Clinicians (several of whom also held leadership or you or your program?” and (ii) “Imagine what you administrative roles) included physicians, nurses, think of as a highly engaged patient. What might clinical psychologists, social workers, recreational they do, or what characteristics might they have, that therapists, and case managers. The represented would make you think of them as highly engaged?” IOCPs were affiliated with diverse organizations, A  team member with a medical background and including county, community, Veterans Affairs, and qualitative research training (C.W.O.) conducted private health systems, and a public payer. IOCP interviews with all program representatives. patient eligibility criteria varied, but most programs Interviews took place in person, except in two cases targeted patients with recent or frequent hospitaliza- when they were conducted by telephone. Interviews tions or emergency department use. lasted 25–55  minutes, and were digitally recorded and transcribed verbatim. Interviewees received The Engagement Through CARInG Framework $50 gift cards. The Stanford University Institutional Review Board approved study procedures and par- Our synthesis of interviews with IOCP representa- ticipants provided written consent prior to partici- tives generated the CARInG Framework for engag- pating in the interviews. ing high-risk patients that comprises three domains: (i) Communication and actions to improve health; Qualitative data analysis (ii) Relationships built on trust in IOCP staff; and (iii) Insight and goal-setting ability. These domains Qualitative data were analyzed with the goal of are summarized in the Engagement Through understanding the domains that comprise patient CARInG Framework (Fig. 1). engagement. We analyzed interview data using a conventional content analysis approach adapted Domain 1: communication and actions to improve health from Hsieh and Shannon [26]. This approach uses inductive strategies to analyze qualitative data and is IOCP staff view engaged patients as individuals often used when the objective is to have data, rather who perform the discrete behaviors of communi- than pre-existing theory, drive analyses. Transcripts cating with staff and participating in self-manage- were imported into a qualitative software program ment actions to improve their health. Because of page 352 of 356 TBM Downloaded from https://academic.oup.com/tbm/article/8/3/351/5001925 by DeepDyve user on 19 July 2022 ORIGINAL RESEARCH Fig. 1 | Engagement Through CARInG Framework. the medical and social complexity of the patients it one day at a time and showed them, ‘We want to served by IOCPs, regular and appropriate com- see you healthier and living a happy life.’” munication is seen as a prerequisite to fully benefit Relationships are seen as critical to developing from the program and its care coordination efforts. practical care coordination and treatment plans. One clinician said, “We [work] with really high risk A  provider explained this as follows: “I think rela- folks, so some of these things might sound really tionship is key. Without having that, it’s more au- basic but that’s actually a pretty big deal.” Another thoritarian, right? ‘Take this! Do this!’ And they will physician explained: “We can’t coordinate care look at you like, ‘Yeah-yeah-yeah.’ They won’t do it.” unless we know they are going to specialists. So, a Ultimately, as patients become more engaged, the highly engaged patient, [will] keep us informed of goal for many programs is to transition from offering what’s going on and check in with us.” One provider services to collaborating in a partnership, as another described how patients’ responses to referrals ref lect provider explained: “I kind of look at it as a two-way levels of engagement: “I have a handful of those street, where we are involved in the patient’s care but patients who I consider highly engaged because we then the patient is also involved […] in working with tell them, ‘It’s time for you to follow up with the neu- us as well.” rologist.’ […] By the time they get downstairs, I get an alert that their appointment has been made.” Domain 3: insight and goal setting ability Included in the set of behaviors that indicate pa- A final domain that IOCP staff use to define engage- tient engagement are self-management actions that ment is patients’ insight about their health, which take place in between direct communication with leads to their ability to set goals, problem solve, and IOCP staff, as a provider explained: “Embracing coordinate their own care. Collectively these skills their role of having to bring information to the visit represent a capacity to understand one’s health and and also [taking] an active role in tr ying to make their what is needed to improve it. As a first step in this health better between their visits.” One provider process, staff felt that patients need to understand summarized these fundamental health behaviors: their medical needs and self-management require- “A patient that is engaged [attends] appointments ments. For example, one clinician noted: “A highly with regularity, […] they are in continuous contact engaged patient is someone who can tell you what with providers and/or they are actively involved in their medicines are, what they are for, what the dos- addressing their healthcare needs.” age is, when their next appointment is, and why that appointment is important.” This insight can be es- Domain 2: relationships built on trust of IOCP staff pecially critical in the setting of severe health issues For many IOCP staff, a trusting relationship is a crit- and social circumstances, which require navigation ical starting point for productive interactions, as one of complex services, as another provider described: staff member explained: “[Patient engagement is] “The patient who is fully engaged understands the completely relationship-based, and it’s about devel- role that self-management plays in their chronic dis- oping a sense of mutual understanding, trust, and ease [and] how that paradigm applies to accessing learning how we can successfully interact with each social services; is very system savvy.” other.” This relationship can take time to develop, Once patients demonstrate this insight, programs and one provider explained that many patients are help them develop the skills required to define initially dubious about programs: “Patients were their own health goals, as a provider explained: “It skeptical and hesitant: ‘This is too good to be true. involves not telling the patient what they need to How are you going to do this or that?’ We just took do but […] having the patient try to think out their TBM page 353 of 356 Downloaded from https://academic.oup.com/tbm/article/8/3/351/5001925 by DeepDyve user on 19 July 2022 ORIGINAL RESEARCH own problem and their own resolution.” One pro- basically to build everything around the patient’s gram administrator summarized how goal-setting goals and we spend a lot of time with people … the and actions in pursuit of goals illustrate a high level outcome is building a relationship that people can of engagement: “So whether it’s blood pressure or trust, and they feel listened to and cared about.” their sugar checks, [the patient] would talk about Participants observed a similar association between the changes they have made and be able to reflect the first and third domains, self-management actions on how that has made them feel better or not, and and goal-setting ability, in which the skills described be able to ask informed questions about their treat- by domain three allow patients to accomplish the ments, and be able to advocate their interests and discrete actions described in domain one. One pro- their goals as we develop the treatment plan.” vider described that as patients are encouraged to set goals and they witness the effects of meeting these Additional properties of engagement domains goals, they develop insight that strengthens their commitment to further self-management actions: Two themes relating to the engagement domains “When they [come] back thinking about a task, it also emerged during analyses. The first is the inter- dependence of the domains, and the second is that [is] the first step. […] When they start telling me why engagement in each domain exists on a spectrum. they want to do it, is when I say, ‘Oh!’ I help them with their own ways to achieve their own goals.” Relationships among engagement domains These connections suggest that programs’ efforts to strengthen patient engagement in one domain may Engagement in one domain often inf luences engage- have additional value for other domains. ment in another. For example, one provider noted that patients are more responsive to communication The spectrum of engagement as trust is established, drawing a connection between the first and second domains: “The tone of the con- The CARInG Framework also illustrates how patient versation changes and they are […] starting to agree engagement exists on a spectrum. Table  1 outlines to do things, including more follow up: ‘Can I call examples of low and high engagement in each of the three domains. Importantly, IOCPs do not perceive you tomorrow?’ And they say, ‘Yes, please do.’” A  provider in another program also explained the a patient’s level of engagement as static. Trusting interconnectedness of these domains in describing relationships naturally require time to develop, as a highly engaged patients: “They are willing to talk nurse coordinator explained: “They might begin to with us on the phone. They will let us do home visits. explore it, like, ‘what [are you] offering us, and what’s They start to see us as advocates for them, and they in it for me,’ and then develop that relationship and see us as part of their team.” that trust. So it’s very step-wise.” Other aspects of Providers also described interrelatedness between engagement, like communication with IOCP staff, the second and third domains—trusting relationships also evolve, even for a patient who enters a program and goal setting ability: “And our methodology is completely unengaged. One provider described Table 1 | Examples of the Spectrum of Engagement Across CARInG Framework Domains Domain Engagement Examples Communication and actions Low • Inconsistent attendance at clinic visits and other appointments • Limited response to outreach • Minimal participation in self-care activities High • Regular attendance at scheduled appointments • Proactive contact with providers when needed • Consistent attention to care plans, especially for chronic illness Relationships built on trust Low • Skepticism of program’s efficacy and purpose • Guarded relationship with staff and providers • Distrust of healthcare system High • Belief that participation in program could improve health • Active partnership with staff and providers • Candid discussions about barriers to improved health Insight and goal setting Low • Limited understanding of illnesses • Inability to interpret how self-management behaviors impact symptoms • Reluctance to develop a care plan High • Clearly defined health goals and priorities • Understanding of provider roles and purpose of treatments • Active questioning to improve comprehension about health page 354 of 356 TBM Downloaded from https://academic.oup.com/tbm/article/8/3/351/5001925 by DeepDyve user on 19 July 2022 ORIGINAL RESEARCH the moment when she typically recognizes that a interventions, such as frequency of communication, patient’s level of engagement has changed: “I think intensity of support for self-management activities, it’s when a patient connects with us enough to start and coaching around insight and goal-setting. talking to us or there’s some level of trust there. You The framework also builds on the literature know, that they are not screening our calls.” describing the engagement of patients in the general Patients’ engagement levels can also vary across population across different organizational levels of domains. For example, one provider described how health care [19–23]. Carman et  al. [23] developed patients can demonstrate insight (domain 3)  while a model that presents how patients can be engaged still struggling with self-management (domain 1): across the healthcare system, with patient roles “People are still engaged when they respond to the progressing from consultation, to involvement, to person they are working with and say, ‘I can’t do this partnership and shared leadership. The CARInG right now.’ When they can name that this is not a Framework complements this model by focusing good time for them, that really shows engagement on engagement of uniquely complex and high-risk and progress.” Importantly, many IOCPs consider patients during direct clinical care. Patients enrolled patients to be engaged even if they are unable to ad- in intensive outpatient programs frequently face se- here to a treatment plan (domain 1), as long as they vere health issues, often compounded by social and maintain a relationship with a provider (domain 2), behavioral circumstances. This clinical and social and/or illustrate awareness about their challenges complexity can necessitate prioritization of the more (domain 3). A program administrator explained this basic elements in the framework (e.g., responding to as follows: “A patient can be engaged in our program phone calls, showing up at appointments, trusting), even if they are not paying a lick of attention to any which often need to be established before issues like of their health conditions. That patient [might dis- insight, problem-solving, and goal-setting can be cuss] challenges with staying clean, off crack, while addressed. at the same time not taking any of her medications.” By outlining the attitudes, skills, and behaviors that comprise engagement for high-risk patients, the Engagement Through CARInG Framework can DISCUSSION guide the development of targeted interventions that A recent New England Journal of Medicine commen- support communication and self-management actions, tary described engagement of high-risk, high-cost build trust and relationships, and facilitate insight and patients as critical to the success of IOCPs [8]. The goal-setting skill development. Helping patients over- Engagement Through CARInG Framework pro- come barriers to engagement in each of these domains vides a practical conceptualization of engagement will ensure that they derive the greatest benefit from the perspective of IOCP providers who have from the care coordination and resources offered by extensive experience in treating and coordinating IOCPs. For example, a patient with transportation care of high-risk patients. The framework illustrates barriers may benefit from virtual care or travel sup- how communication and actions to improve health, port (domain 1, communication and self-management relationships built on trust, and insight and goal-set- actions), while patients with distrust in the healthcare ting ability are interconnected domains that exist on system may benefit from gestures that demonstrate re- a spectrum and collectively reflect patients’ engage- spect and awareness of personal challenges (domain ment in IOCPs. 2, relationships and trust). Patients with serious mental The Engagement Through CARInG Framework illness, meanwhile, may need intensive case manage- builds on an extensive body of literature describing ment and counseling to support problem-solving (do- the concept of patient activation, which was first main 3, insight and goal setting). defined by Judith Hibbard and comprises patient It should be noted that these qualitative findings self-reported knowledge, skill, and confidence for are derived from perspectives of program clinical self-management of health [28, 29]. One way of con- staff and leadership located in one region of the ceptualizing the relationship between activation and engagement is that the latter is a manifestation of country. The CARInG Framework will require future validation with patients, caregivers, and the former. For example, patients who are activated program representatives from other geographic are more likely to perform recommended health behaviors [30], including the self-management en- regions. Future research should evaluate the effectiveness of specific patient engagement strat- gagement activities described in the communication and actions domain of the CARInG Framework. egies aligned with the domains of the CARInG We found that several IOCP teams formally or in- Framework. In conclusion, it is well recognized that there is formally assess patient activation levels to determine the level of support and the type of intervention that a critical demand for effective interventions for individuals need; the CARInG Framework can pro- patients with medical, social, and behavioral com- vide guidance about how to operationalize the use plexity [31]. While evidence about optimal care of activation assessments (e.g., the Patient Activation coordination strategies continues to evolve [32], Measure [28, 29]) to titrate specific engagement enhancing patient engagement strategies will TBM page 355 of 356 Downloaded from https://academic.oup.com/tbm/article/8/3/351/5001925 by DeepDyve user on 19 July 2022 ORIGINAL RESEARCH 8. Blumenthal D, Chernof B, Fuller T, Pumpkin J, Selberg J. Caring for high- maximize the value of efforts to meet the complex need, high-cost patients—an urgent priority. N Engl J Med. 2017; 375(10): needs of these patients. The Engagement Through 909–911. CARInG Framework provides a structure to guide 9. Bodenheimer T. Strategies to reduce costs and improve care for high-uti- lizing medicaid patients: Reflections on pioneering programs. Hamilton, the ways in which targeted programs can address NJ: Center for Health Care Strategies; 2013. engagement in their patient assessments, service 10. Peterson K, Helfand M, Humphrey L, Christensen V, Carson S. Evidence Brief: Effectiveness of Intensive Primary Care Programs. Evidence-based delivery, and ongoing care. synthesis program. Portland, OR: Portland VA Medical Center; 2013. 11. Hong C, Siegel A, Ferris T. Caring for high-need, high-cost patients: What Acknowledgements: The authors would like to acknowledge the individ- makes for a successful care management program? Issue Brief. New uals who volunteered their time to participate in this study and provide York, NY: Commonwealth Fund; 2014, 1–19. their insight on patient engagement in IOCPs. C.W.O. was supported by a 12. Powers BW, Chaguturu SK, Ferris TG. Optimizing high-risk care manage- MedScholars grant from Stanford University School of Medicine. J.Y.B. was ment. JAMA. 2015; 313(8):795–796. 13. Bodenheimer T, Berry-Millett R. Follow the money—controlling expendi- supported by the VA Office of Academic Affiliations and a Health Services tures by improving care for patients needing costly services. N Engl J Research and Development Career Development Award (CDA 15–257). Med. 2009; 361(16):1521–1523. D.M.Z. was supported by a VA HSR&D Career Development Award (CDA 14. Hasselman D. Super-Utilizer Summit: Common Themes from Innovative 12–173) and received support from the Stanford University Presence Complex Care Management Programs. Hamilton, NJ: Center for Health Center’s partnership with the Stanford Cyber Initiative. The funding bodies Care Strategies; 2013. had no role in design, in the collection, analysis, or interpretation of data; in 15. Berwick DM, Nolan TW, Whittington J. The triple aim: Care, health, and the writing of the manuscript; or in the decision to submit the manuscript cost. Health Aff (Millwood) . 2008; 27(3): 759–769. for publication. 16. 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Engaging high-risk patients in intensive care coordination programs: the engagement through CARInG framework

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Copyright © 2022 Society of Behavioural Medicine
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Abstract

School of Medicine, Stanford Implications University, Stanford, CA, USA Intensive outpatient care programs (IOCPs) have shown prom- Practice: The Engagement Through CARInG Center for Innovation to ise for high-risk patients who account for disproportionate acute Implementation, VA Palo Alto Framework can guide intensive care coordination care utilization and costs. These programs typically address Healthcare System, Menlo Park, programs that aim to engage high-risk patients with medical, behavioral, and social needs through intensive case CA, USA complex medical, behavioral, and social needs. management, health care navigation, coordination, and access Department of Psychiatry and to a range of social and community services. However, the Behavioral Sciences, Stanford value of these programs is often limited by patient engagement University School of Medicine, challenges (i.e., difficulty engaging patients in self-care, deci- Stanford, CA, USA Policy: Policy to support engagement of com- sion-making, and follow-up with recommended services). The Division of Primary Care and plex, high-risk patients should: (i) address struc- purpose of this study was to develop a framework for engaging Population Health, Stanford tural and regulatory barriers to team-based care, University, Stanford, CA, USA high-risk patients with complex medical, behavioral, and social and (ii) focus on payment structures and perform- needs in IOCPs. We conducted a qualitative study with 20 ance measures that reward patient-centered care Correspondence to: DM Zulman, leaders and clinicians (e.g., physicians, nurses, psychologists, [email protected] that is aligned with individuals’ goals. case workers) from 12 IOCPs affiliated with diverse settings Cite this as: TBM 2018;8:351–356 (academic hospitals, county healthcare systems, Veterans doi: 10.1093/tbm/ibx004 Published by Oxford University Press Affairs facilities, community health centers, and private health Research: Future research should evaluate the on behalf of the Society of Behavioral systems). After completing a brief survey, participants were Medicine 2018. This work is written by effectiveness of specific patient engagement asked to describe how their program conceptualizes patient (a) US Government employees(s) and strategies within the domains of the CARInG engagement and to describe characteristics of highly engaged is in the public domain in the US. Framework. patients. We used conventional content analysis methods to analyze qualitative data. Three domains of engagement were identified and are summarized in the Engagement Through CARInG Framework: Communication and actions to improve health; Relationships built on trust in IOCP staff; and Insight coordination, enhanced access to a team of clini- and goal-setting ability. Qualitative findings illustrate the spec - cians (e.g., through extended hours and home visits), trum and interrelatedness of these domains. The Engagement and a wide range of social and community services Through CARInG Framework can guide interventions that aim to [11–14]. enhance self-care and improve care coordination for high-risk Evaluations of IOCPs and other case management patients with complex medical, behavioral, and social needs. approaches have demonstrated increased patient satisfaction, but there is less consistent evidence for Keywords improved clinical outcomes and reduced costs [11, Care coordination, Primary care, Multiple chronic 15–17]. During a 2013 IOCP summit, innovators and conditions, Patient care management experts determined that inconsistent patient engage- ment in these programs is a major barrier to achiev- ing the Triple Aim of enhanced patient experience, INTRODUCTION improved health, and reduced costs [14]. Patient Health care spending in the USA is concentrated engagement has been conceptualized in myriad among a small minority of patients—50% of expendi- ways in the medical literature, but generally refers to tures are attributable to just 5% of patients [1–4]. the degree to which patients participate in health-re- The convergence of multiple chronic conditions, lated activities, partner with healthcare providers co-morbid mental illness, and social stressors in in clinical decision-making, and interact with the many of these high-risk patients contributes to frag- healthcare system [18–23]. This definition of engage- mented care, frequent emergency department visits, ment, however, may not be relevant for patients with and hospitalizations [3, 5–7]. In recent years, inten- high-risk profiles who often require unconventional sive outpatient care programs (IOCPs) have been approaches and interventions. widely implemented to improve chronic care coord- To address this gap and to advance understanding ination and prevent health deteriorations and costly of patient engagement in intensive care coordination service use [8–11]. Although designs vary, IOCPs programs, we conducted a qualitative study with typically offer intensive case management and care TBM page 351 of 356 Downloaded from https://academic.oup.com/tbm/article/8/3/351/5001925 by DeepDyve user on 19 July 2022 ORIGINAL RESEARCH representatives from IOCPs serving patients with to support data management, coding, and cod- complex medical, social, and behavioral needs. Our ing comparisons (ATLAS.ti7, Scientific Software objective was to synthesize the expertise of clinicians Development, Berlin, Germany). Two authors and program leaders, and to develop an engage- (C.W.O. and C.S.) reviewed the text from five ment framework to assist programs in improving randomly selected transcripts to develop a prelim- their care for high-risk patients. inary code book based on the similarities and dif- ferences in how participants described engagement. The interdisciplinary research team met to refine MATERIALS AND METHODS the preliminary code book and to discuss applic- Study recruitment ability, consistency, and validity of the codes. The We used maximum variation purposive sampling revised codes included domains that comprised how [24] to identify IOCPs in Northern California that respondents defined engagement, such as trust and were diverse in regard to setting, affiliated health- patient insight. Using the revised code book, two care system (e.g., academic, community, Veterans authors (C.W.O. and C.S.) independently coded Affairs), payer, and target patient population (e.g., three additional transcripts and then reviewed the employed individuals, underserved patients, vet- coded transcripts together for consistency and to erans). Eligible IOCPs had a mission to offer care discuss discrepancy in the coding [27]. After achiev- coordination and enhanced services for high-risk ing coding consistency, the remaining transcripts patients. We first approached attendees of a 2014 were coded and any remaining discrepancies were regional meeting on high-risk patients, and sup- resolved by discussion with a third author (J.Y.B.). plemented this list by snowball sampling [25]. We Once coding was complete, the research team contacted clinical staff or program leaders from 18 reviewed the quotations for each code and then IOCPs via e-mail, with a 67% response rate. When grouped the codes into major domains, identifying possible, we asked the initial contact to recommend cross-cutting themes about the domains’ properties another program representative with a different role and their relationships. The major domains were to participate in a second interview. used to develop a working framework for patient engagement. Interview procedure Guided by a qualitative expert on the research team RESULTS (A.N.), we developed a semi-structured interview Participant and program characteristics guide based on a review of the patient engagement Participants included 20 IOCP staff members from literature. The framework presented in this paper 12 different programs; 15 (75%) were clinicians and derives from responses to two core interview ques- 12 (60%) were program leaders and administrators. tions: (i) “What does patient engagement mean to Clinicians (several of whom also held leadership or you or your program?” and (ii) “Imagine what you administrative roles) included physicians, nurses, think of as a highly engaged patient. What might clinical psychologists, social workers, recreational they do, or what characteristics might they have, that therapists, and case managers. The represented would make you think of them as highly engaged?” IOCPs were affiliated with diverse organizations, A  team member with a medical background and including county, community, Veterans Affairs, and qualitative research training (C.W.O.) conducted private health systems, and a public payer. IOCP interviews with all program representatives. patient eligibility criteria varied, but most programs Interviews took place in person, except in two cases targeted patients with recent or frequent hospitaliza- when they were conducted by telephone. Interviews tions or emergency department use. lasted 25–55  minutes, and were digitally recorded and transcribed verbatim. Interviewees received The Engagement Through CARInG Framework $50 gift cards. The Stanford University Institutional Review Board approved study procedures and par- Our synthesis of interviews with IOCP representa- ticipants provided written consent prior to partici- tives generated the CARInG Framework for engag- pating in the interviews. ing high-risk patients that comprises three domains: (i) Communication and actions to improve health; Qualitative data analysis (ii) Relationships built on trust in IOCP staff; and (iii) Insight and goal-setting ability. These domains Qualitative data were analyzed with the goal of are summarized in the Engagement Through understanding the domains that comprise patient CARInG Framework (Fig. 1). engagement. We analyzed interview data using a conventional content analysis approach adapted Domain 1: communication and actions to improve health from Hsieh and Shannon [26]. This approach uses inductive strategies to analyze qualitative data and is IOCP staff view engaged patients as individuals often used when the objective is to have data, rather who perform the discrete behaviors of communi- than pre-existing theory, drive analyses. Transcripts cating with staff and participating in self-manage- were imported into a qualitative software program ment actions to improve their health. Because of page 352 of 356 TBM Downloaded from https://academic.oup.com/tbm/article/8/3/351/5001925 by DeepDyve user on 19 July 2022 ORIGINAL RESEARCH Fig. 1 | Engagement Through CARInG Framework. the medical and social complexity of the patients it one day at a time and showed them, ‘We want to served by IOCPs, regular and appropriate com- see you healthier and living a happy life.’” munication is seen as a prerequisite to fully benefit Relationships are seen as critical to developing from the program and its care coordination efforts. practical care coordination and treatment plans. One clinician said, “We [work] with really high risk A  provider explained this as follows: “I think rela- folks, so some of these things might sound really tionship is key. Without having that, it’s more au- basic but that’s actually a pretty big deal.” Another thoritarian, right? ‘Take this! Do this!’ And they will physician explained: “We can’t coordinate care look at you like, ‘Yeah-yeah-yeah.’ They won’t do it.” unless we know they are going to specialists. So, a Ultimately, as patients become more engaged, the highly engaged patient, [will] keep us informed of goal for many programs is to transition from offering what’s going on and check in with us.” One provider services to collaborating in a partnership, as another described how patients’ responses to referrals ref lect provider explained: “I kind of look at it as a two-way levels of engagement: “I have a handful of those street, where we are involved in the patient’s care but patients who I consider highly engaged because we then the patient is also involved […] in working with tell them, ‘It’s time for you to follow up with the neu- us as well.” rologist.’ […] By the time they get downstairs, I get an alert that their appointment has been made.” Domain 3: insight and goal setting ability Included in the set of behaviors that indicate pa- A final domain that IOCP staff use to define engage- tient engagement are self-management actions that ment is patients’ insight about their health, which take place in between direct communication with leads to their ability to set goals, problem solve, and IOCP staff, as a provider explained: “Embracing coordinate their own care. Collectively these skills their role of having to bring information to the visit represent a capacity to understand one’s health and and also [taking] an active role in tr ying to make their what is needed to improve it. As a first step in this health better between their visits.” One provider process, staff felt that patients need to understand summarized these fundamental health behaviors: their medical needs and self-management require- “A patient that is engaged [attends] appointments ments. For example, one clinician noted: “A highly with regularity, […] they are in continuous contact engaged patient is someone who can tell you what with providers and/or they are actively involved in their medicines are, what they are for, what the dos- addressing their healthcare needs.” age is, when their next appointment is, and why that appointment is important.” This insight can be es- Domain 2: relationships built on trust of IOCP staff pecially critical in the setting of severe health issues For many IOCP staff, a trusting relationship is a crit- and social circumstances, which require navigation ical starting point for productive interactions, as one of complex services, as another provider described: staff member explained: “[Patient engagement is] “The patient who is fully engaged understands the completely relationship-based, and it’s about devel- role that self-management plays in their chronic dis- oping a sense of mutual understanding, trust, and ease [and] how that paradigm applies to accessing learning how we can successfully interact with each social services; is very system savvy.” other.” This relationship can take time to develop, Once patients demonstrate this insight, programs and one provider explained that many patients are help them develop the skills required to define initially dubious about programs: “Patients were their own health goals, as a provider explained: “It skeptical and hesitant: ‘This is too good to be true. involves not telling the patient what they need to How are you going to do this or that?’ We just took do but […] having the patient try to think out their TBM page 353 of 356 Downloaded from https://academic.oup.com/tbm/article/8/3/351/5001925 by DeepDyve user on 19 July 2022 ORIGINAL RESEARCH own problem and their own resolution.” One pro- basically to build everything around the patient’s gram administrator summarized how goal-setting goals and we spend a lot of time with people … the and actions in pursuit of goals illustrate a high level outcome is building a relationship that people can of engagement: “So whether it’s blood pressure or trust, and they feel listened to and cared about.” their sugar checks, [the patient] would talk about Participants observed a similar association between the changes they have made and be able to reflect the first and third domains, self-management actions on how that has made them feel better or not, and and goal-setting ability, in which the skills described be able to ask informed questions about their treat- by domain three allow patients to accomplish the ments, and be able to advocate their interests and discrete actions described in domain one. One pro- their goals as we develop the treatment plan.” vider described that as patients are encouraged to set goals and they witness the effects of meeting these Additional properties of engagement domains goals, they develop insight that strengthens their commitment to further self-management actions: Two themes relating to the engagement domains “When they [come] back thinking about a task, it also emerged during analyses. The first is the inter- dependence of the domains, and the second is that [is] the first step. […] When they start telling me why engagement in each domain exists on a spectrum. they want to do it, is when I say, ‘Oh!’ I help them with their own ways to achieve their own goals.” Relationships among engagement domains These connections suggest that programs’ efforts to strengthen patient engagement in one domain may Engagement in one domain often inf luences engage- have additional value for other domains. ment in another. For example, one provider noted that patients are more responsive to communication The spectrum of engagement as trust is established, drawing a connection between the first and second domains: “The tone of the con- The CARInG Framework also illustrates how patient versation changes and they are […] starting to agree engagement exists on a spectrum. Table  1 outlines to do things, including more follow up: ‘Can I call examples of low and high engagement in each of the three domains. Importantly, IOCPs do not perceive you tomorrow?’ And they say, ‘Yes, please do.’” A  provider in another program also explained the a patient’s level of engagement as static. Trusting interconnectedness of these domains in describing relationships naturally require time to develop, as a highly engaged patients: “They are willing to talk nurse coordinator explained: “They might begin to with us on the phone. They will let us do home visits. explore it, like, ‘what [are you] offering us, and what’s They start to see us as advocates for them, and they in it for me,’ and then develop that relationship and see us as part of their team.” that trust. So it’s very step-wise.” Other aspects of Providers also described interrelatedness between engagement, like communication with IOCP staff, the second and third domains—trusting relationships also evolve, even for a patient who enters a program and goal setting ability: “And our methodology is completely unengaged. One provider described Table 1 | Examples of the Spectrum of Engagement Across CARInG Framework Domains Domain Engagement Examples Communication and actions Low • Inconsistent attendance at clinic visits and other appointments • Limited response to outreach • Minimal participation in self-care activities High • Regular attendance at scheduled appointments • Proactive contact with providers when needed • Consistent attention to care plans, especially for chronic illness Relationships built on trust Low • Skepticism of program’s efficacy and purpose • Guarded relationship with staff and providers • Distrust of healthcare system High • Belief that participation in program could improve health • Active partnership with staff and providers • Candid discussions about barriers to improved health Insight and goal setting Low • Limited understanding of illnesses • Inability to interpret how self-management behaviors impact symptoms • Reluctance to develop a care plan High • Clearly defined health goals and priorities • Understanding of provider roles and purpose of treatments • Active questioning to improve comprehension about health page 354 of 356 TBM Downloaded from https://academic.oup.com/tbm/article/8/3/351/5001925 by DeepDyve user on 19 July 2022 ORIGINAL RESEARCH the moment when she typically recognizes that a interventions, such as frequency of communication, patient’s level of engagement has changed: “I think intensity of support for self-management activities, it’s when a patient connects with us enough to start and coaching around insight and goal-setting. talking to us or there’s some level of trust there. You The framework also builds on the literature know, that they are not screening our calls.” describing the engagement of patients in the general Patients’ engagement levels can also vary across population across different organizational levels of domains. For example, one provider described how health care [19–23]. Carman et  al. [23] developed patients can demonstrate insight (domain 3)  while a model that presents how patients can be engaged still struggling with self-management (domain 1): across the healthcare system, with patient roles “People are still engaged when they respond to the progressing from consultation, to involvement, to person they are working with and say, ‘I can’t do this partnership and shared leadership. The CARInG right now.’ When they can name that this is not a Framework complements this model by focusing good time for them, that really shows engagement on engagement of uniquely complex and high-risk and progress.” Importantly, many IOCPs consider patients during direct clinical care. Patients enrolled patients to be engaged even if they are unable to ad- in intensive outpatient programs frequently face se- here to a treatment plan (domain 1), as long as they vere health issues, often compounded by social and maintain a relationship with a provider (domain 2), behavioral circumstances. This clinical and social and/or illustrate awareness about their challenges complexity can necessitate prioritization of the more (domain 3). A program administrator explained this basic elements in the framework (e.g., responding to as follows: “A patient can be engaged in our program phone calls, showing up at appointments, trusting), even if they are not paying a lick of attention to any which often need to be established before issues like of their health conditions. That patient [might dis- insight, problem-solving, and goal-setting can be cuss] challenges with staying clean, off crack, while addressed. at the same time not taking any of her medications.” By outlining the attitudes, skills, and behaviors that comprise engagement for high-risk patients, the Engagement Through CARInG Framework can DISCUSSION guide the development of targeted interventions that A recent New England Journal of Medicine commen- support communication and self-management actions, tary described engagement of high-risk, high-cost build trust and relationships, and facilitate insight and patients as critical to the success of IOCPs [8]. The goal-setting skill development. Helping patients over- Engagement Through CARInG Framework pro- come barriers to engagement in each of these domains vides a practical conceptualization of engagement will ensure that they derive the greatest benefit from the perspective of IOCP providers who have from the care coordination and resources offered by extensive experience in treating and coordinating IOCPs. For example, a patient with transportation care of high-risk patients. The framework illustrates barriers may benefit from virtual care or travel sup- how communication and actions to improve health, port (domain 1, communication and self-management relationships built on trust, and insight and goal-set- actions), while patients with distrust in the healthcare ting ability are interconnected domains that exist on system may benefit from gestures that demonstrate re- a spectrum and collectively reflect patients’ engage- spect and awareness of personal challenges (domain ment in IOCPs. 2, relationships and trust). Patients with serious mental The Engagement Through CARInG Framework illness, meanwhile, may need intensive case manage- builds on an extensive body of literature describing ment and counseling to support problem-solving (do- the concept of patient activation, which was first main 3, insight and goal setting). defined by Judith Hibbard and comprises patient It should be noted that these qualitative findings self-reported knowledge, skill, and confidence for are derived from perspectives of program clinical self-management of health [28, 29]. One way of con- staff and leadership located in one region of the ceptualizing the relationship between activation and engagement is that the latter is a manifestation of country. The CARInG Framework will require future validation with patients, caregivers, and the former. For example, patients who are activated program representatives from other geographic are more likely to perform recommended health behaviors [30], including the self-management en- regions. Future research should evaluate the effectiveness of specific patient engagement strat- gagement activities described in the communication and actions domain of the CARInG Framework. egies aligned with the domains of the CARInG We found that several IOCP teams formally or in- Framework. In conclusion, it is well recognized that there is formally assess patient activation levels to determine the level of support and the type of intervention that a critical demand for effective interventions for individuals need; the CARInG Framework can pro- patients with medical, social, and behavioral com- vide guidance about how to operationalize the use plexity [31]. While evidence about optimal care of activation assessments (e.g., the Patient Activation coordination strategies continues to evolve [32], Measure [28, 29]) to titrate specific engagement enhancing patient engagement strategies will TBM page 355 of 356 Downloaded from https://academic.oup.com/tbm/article/8/3/351/5001925 by DeepDyve user on 19 July 2022 ORIGINAL RESEARCH 8. Blumenthal D, Chernof B, Fuller T, Pumpkin J, Selberg J. Caring for high- maximize the value of efforts to meet the complex need, high-cost patients—an urgent priority. N Engl J Med. 2017; 375(10): needs of these patients. The Engagement Through 909–911. CARInG Framework provides a structure to guide 9. Bodenheimer T. Strategies to reduce costs and improve care for high-uti- lizing medicaid patients: Reflections on pioneering programs. Hamilton, the ways in which targeted programs can address NJ: Center for Health Care Strategies; 2013. engagement in their patient assessments, service 10. 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Journal

Translational Behavioral Medicine – Oxford University Press

Published: May 23, 2018

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