Perspectives of Patients,Clinicians,and Health System Leaders on Changes Needed to Improve the Health Care and Outcomes of Older Adults With Multiple Chronic Conditions

Abstract

Objective: To ascertain perspectives of multiple stakeholders on contributors to inappropriate care for older adults with multiple chronic conditions. Method: Perspectives of 36 purposively sampled patients, clinicians, health systems, and payers were elicited. Data analysis followed a constant comparative method. Results: Structural factors triggering burden and fragmentation include disease-based quality metrics and need to interact with multiple clinicians. The key cultural barrier identified is the assumption that “physicians know best.” Inappropriate decision making may result from inattention to trade-offs and adherence to multiple disease guidelines. Stakeholders recommended changes in culture, structure, and decision making. Care options and quality metrics should reflect a focus on patients’ priorities. Clinician–patient partnerships should reflect patients knowing their health goals and clinicians knowing how to achieve them. Access to specialty expertise should not require visits. Discussion: Stakeholders’ recommendations suggest health care redesigns that incorporate patients’ health priorities into care decisions and realign relationships across patients and clinicians.

Keywords

multiple chronic conditions patient–clinician partnership patient-centered metrics patients’ health priorities

Terms

Patients’ health priorities: The health outcome goals that patients prioritize within the context of their care preferences.

Patient priority care: Care that is aligned with achieving each patient’s health outcome goals within the context of their care preferences.

Health outcome goals: These are the personal health and life outcomes (e.g., function, social activities, and symptom relief) that people hope to achieve through their health care.

Care preferences: Also called patient activity, care preferences refer to what individuals are able and willing to do to achieve their health outcomes and include such items as medication complexity, health visits, diagnostic testing, self-monitoring, and self-management tasks.

The major users of health care are adults, particularly older adults with multiple chronic conditions (Bynum, Meara, Chang, Rhoads, & Bronner, 2016; Parekh, Goodman, Gordon, & Koh, 2011). The 36% of Medicare beneficiaries with two or more chronic conditions account for 86% of Part A Medicare payments (Erdem, Prada, & Haffer, 2013). They spend a mean of 33 days in contact with the health care system and visit an average of 4.6 primary and specialty clinicians each year (Bynum et al., 2016). In caring for their patients with multiple conditions, primary care clinicians must interact, or coordinate, care with more than 100 other physicians, many of whom they do not know (Pham,O’Malley, Bach, Saiontz-Martinez, & Schrag, 2009). This fragmented care is frustrating for patients and clinicians alike (Stange, 2009). Furthermore, the increasing number and complexity of patient-related activities such as medication management, health care visits, and self-management tasks are burdensome, often as burdensome as the conditions themselves (Bayliss, 2012; Boyd et al., 2014; Tran, Montori, Barnes, Wicks, & Ravaud, 2014). This care may also be of unclear benefit. Persons with multiple conditions, excluded from most evidence-generating clinical trials, may not accrue the same benefit from treatments as those with a single or few conditions (Dhruva & Redberg, 2008; Kamerow, 2012; O’Hare et al., 2014; Tinetti, 2014). Disease guideline–driven care may even be harmful in the presence of competing conditions (Lorgunpai et al., 2014). Furthermore, older adults with multiple chronic conditions vary in their health outcome goals when faced with trade-offs that require difficult choices (Case, O’Leary, Kim, Tinetti, & Fried, 2014; Fried, McGraw, Agostini, & Tinetti, 2008; Fried et al., 2011; Naik & McCullough, 2014; Tinetti et al., 2008), and in what they are willing and able to do to achieve these outcomes (Case, 2014; Fried et al., 2008; Fried et al., 2011; May et al., 2014; Naik & McCullough, 2014; Tinetti et al., 2008). Health care for a sizable proportion of Medicare beneficiaries, therefore, may be of low value—poor quality and outcomes, and high cost (Tinetti, Naik, & Dodson, 2016).

Many delivery and payment innovations and regulations aim to improve the value and quality of health care. Accountable Care Organizations (ACOs), Patient Centered Medical Homes (PCMHs), monthly care coordination services payment, telemedicine, and the 30-day hospital readmission penalty are just a few of the many innovations aimed at improving care and coordination (Aronson, Bautista, & Covinsky, 2015; Jackson et al., 2013; Nyweide et al., 2015; Zuckerman, Sheingold, Orav, Ruhter, & Epstein, 2016). The pending Medicare Access Children’s Health Insurance Program (CHIP) Reauthorization Act (MACRA) of 2015 further attempts to align physician payments with better quality of care and reduction of unnecessary costs (Centers for Medicare & Medicaid Services, 2016). These, and most other recent innovations, aim to improve the structure, coordination, and organization of delivery, or change the payment model, for health care.

Appropriate care for Medicare beneficiaries with multiple chronic conditions means not only coordinated care but also care that is less burdensome and that is aligned with achieving the health outcomes that matter most to each patient (Fried et al., 2008; Fried et al., 2011; Ickowicz, 2012; Tinetti, Esterson, Ferris, Posner, & Blaum, 2016). Structural and payment changes alone may, therefore, be insufficient to ensure appropriate care for this population.

Multiple stakeholders contribute to, and are affected by, health care for persons with multiple conditions. These stakeholders likely have differing views on problems with current care and suggested targets of health care innovation for this complex population. Therefore, we elicited the perspectives of a broad array of key stakeholder groups concerning potentially modifiable factors contributing to inappropriate care for older adults with multiple chronic conditions and innovations needed to improve this care.

Method

Participants

Participants were drawn from a large multistakeholder group assembled to provide diverse perspectives on issues related to the care of older adults with multiple chronic conditions (Tinetti, Esterson, et al., 2016). Using purposive sampling to identify persons who had the desired knowledge, we invited patients, caregivers, primary care clinicians (physicians and advanced practice registered nurses), specialty clinicians, health system leaders, health care design experts, health information technology (HIT) experts, and payers to participate in one of three advisory groups (Ritchie, Lewis, Nicholls, & Ormston, 2013). Each group included individuals representing these various perspectives. The advisory groups, ranging in size from 10 to 15, included six patients or caregivers (most were both), seven primary care clinicians (three physicians and four advanced practice registered nurses), eight specialty physicians, three payers, five health system leaders, five representatives of national organizations, and three HIT or system design experts.

Data Collection

The participants’ perspectives were elicited during 16 video webinar-based conference calls that occurred between May 2014 and April 2015. The calls were facilitated by a trained physician facilitator who ensured that everyone’s input was elicited. During the calls, the facilitator asked questions and gave prompts to draw out the perspectives of all participants on modifiable factors contributing to inappropriate care for older adults with multiple conditions, and on innovations they felt would promote implementation of appropriate care for this patient population. The video conference calls were recorded and transcribed by a professional transcription service.

Analysis

Data collection and analysis were based on a constant comparative method, initiated by Glaser and Strauss, in which themes are allowed to emerge from initial findings, not chosen before data collection (Glaser & Strauss, 2009). Preliminary data were used to form the conceptual basis for subsequent discussion, creating an iterative process in which subsequent discussions built on previous ones. This project began with an in-person kick-off meeting in April 2014, which guided the subsequent video conference calls.

To begin analysis, two investigators independently coded the transcribed notes from the kick-off meeting. The investigators met, compared codes, and developed an initial code structure. Starting with this initial structure, these investigators independently coded the conference call transcripts using Atlas.ti, a software for qualitative analysis of large amounts of text (“Atlas-Ti: The Knowledge Workbench,” 1996). Open coding was used, allowing for codes to be described based on identification of concepts that emerged during analysis of the transcripts (Glaser & Strauss, 2009). The process of coding was characterized by constant comparisons, where concepts were continuously compared for similarities and differences and eventually grouped together into common themes (Glaser & Strauss, 2009). Once the two independent code structures were complete, the investigators engaged in a validation process to determine reliability of the codes. The two researchers merged Atlas.ti data sets into one data set. Similar codes were combined after analysis and discussion. Investigators came to a consensus on a final list of codes to discover overarching themes.

This project was considered quality improvement and exempt from review by the Yale School of Medicine Institutional Review Board.

Results

The interdisciplinary groups of advisors identified three overarching categories of themes that described factors contributing to the fragmented, burdensome care experienced by many persons with multiple chronic conditions, as well as recommended changes aimed at improving this care. The categories that emerged from discussions included structural and payment barriers as well cultural issues that can either impede or support appropriate care. The third category involved limitations of the content of current clinical decision making.

The first three tables present subthemes around contributing factors and recommended changes for each of these overarching themes. Table 4 presents components of a proposed model of decision making and care for persons with multiple conditions based on our multistakeholder groups’ recommended changes.

Health Care Structural and Payment Factors and Recommended Changes

The plethora of disease-based quality metrics that define quality and determine payment, “ . . . the specialist is going to be getting better quality ratings if he or she prescribes according to the guidelines so it’s a bit of a challenge. . . especially in patients that have complex needs . . . ” and involvement of multiple clinicians, “They are worse in the sum in the burden of care . . . and the need for care coordination between primary [and] specialty [clinicians] and others . . . ” were issues mentioned by participants as contributing to burdensome, fragmented care for persons with multiple conditions. Stakeholders reported that fee-for-service models are counterproductive for this population. Payment continues to be driven by productivity even with current and proposed value-based payment reforms. The current electronic health records structure was another reported barrier to appropriate care,

Well you’re going to have to tell me the story again. I know you told it to seven different people, seven different ways but I don’t share the same medical records so now you [patients] have to sort of bear the consequence of that.

Conversely, the advisory groups noted that patient-based, rather than disease-based, quality metrics and other financial and nonfinancial incentives could encourage care focused on what matters most to patients. Reducing the numbers of clinicians who need to interact, obviating the need for patients to visit specialists to get their input, and identifying a “clinical quarterback” and primary point of contact for patients and caregivers when multiple clinicians are involved were health care organization and workflow redesigns that the groups reported could improve care and reduce burden and fragmentation. Finally, participants recommended orienting workflow, including the electronic health record, around patients’ concerns, “ . . . is there a way to redesign the work flows and the processes [to be] oriented towards the patient and the caregiver?” (Table 1).

Table 1.

Health Care Structural Factors Contributing to Burdensome, Fragmented Care of Older Adults With Multiple Conditions and Recommended Innovations.

Themes	Exemplary quotes
Structural and payment contributing factors
Quality is measured by disease-specific outcomes, not by patient priorities (quality metrics)	“ . . . the specialist is going to be getting better quality ratings if he or she prescribes according to the guidelines so it’s a bit of a challenge, especially in patients that have complex needs.” (Primary care physician)
The receipt of care by multiple is a source of burden for persons with multiple conditions (multiple providers)	“They are worse in the sum in the burden of care . . . and the need for care coordination between primary [and] specialty [clinicians] and others . . . ” (Payer)
Clinicians do not have financial incentives to address what matters to patients (financial incentives)	“What are their incentives to do work differently, and unfortunately you know, they are incentivized by productivity that doesn’t necessarily match some of the goals toward good communication.” (Nurse)
	“I didn’t hear anything about who would provide incentives for the primary care practice to go through it.” (Primary care physician)
Current electronic health records structure is a barrier to aligning care (workflow and electronic health records)	“Well you’re going to have them me you story again. I know you told it to seven different people, seven different ways but I don’t share the same medical records so now you [patients] have to bear the consequence for that.” (Specialty physician and health care quality expert)
Recommended structural and payment innovations
Quality metrics could encourage care that focuses on what matters most to patients (quality metrics)	“It’s about better care, that people are having better experiences with care, so I think as payers are now paying is part of . . . and certainly Medicare is now looking at satisfaction . . . ” (Health system leader and APRN)
Patients may not need to see specialists to get specialist input (multiple providers)	“When you begin to address the logistics of the referral process, it changes the dynamic and the conversation between the primary care and the specialist . . . special[ist] might be able to look at the referral record and say, ‘Gosh, I don’t really think I need to see this patient for . . .’” (Health system leader)
Patients and caregivers want one point of contact (multiple providers)	“I think more typical comment we’ve heard coming from the families at least, they really want to have like one point of contact and knowing there’s somebody who’s coordinating all of these information, multidisciplinary teams, . . . separate members . . . ” (Caregiver)
Care focused on patients’ goals may be of benefit to some health systems and clinicians (financial and nonfinancial incentives)	“Perhaps in the context of an ACO or some other integrated system that cost could be borne by the organization that stands to benefit from the reduction and duplication or unnecessary care.” (Primary care physician discussing patients’ goals driving care)
	“ . . . there’s good work being done around thinking about this called affective incentive . . . that has nothing to do with the money or the financial incentive.” (Primary care physician)
Redesign clinical workflow around patient goals and preferences (workflow and electronic health records)	“ . . . is there a way to redesign the work flows and the processes . . . oriented towards the patient and the caregiver?” (Health system leader)
Incorporate patients’ goals and preferences into the Electronic Health Record (EHR) in a way that clinicians will use it (workflow and electronic health records)	“It could be [incorporated] into the record in such a way that no one will use it . . . if it’s a two page rambling about what’s important to me it may be that clinicians are less likely to want to read all that and figure out how to apply it to decision making” (Primary care physician discussing orienting the EHR around patients’ goals)
Need to incorporate referrals to community organizations into care workflow	“ . . . thinking about trying to tie this into both care coordinators or navigators within health systems because those are the folks with a relationship with community base organizations. Those will be folks that are probably going to [sic] be interacting with referrals and following people throughout their touch point of health . . . ” (APRN health system leader)

Note. APRN = Advanced Practice Registered Nurse; ACO = Accountable Care Organization.

Cultural Barriers to More Appropriate Care and Needed Cultural Changes

One reason cited for care not addressing what matters most to patients was the perception that physicians think they know what is best for patients. One physician reported hearing from another physician, “I think my biggest concern is if I convey the risk too strongly, that they will choose or make an unwise decision and not proceed with therapy . . . ” This assumption that clinicians know best was felt to result in patients agreeing to care that is inconsistent with their goals and preferences, “ . . . Our patients would prefer to see specialists who recommend procedures and tests that are not consistent with patient goals. And patients often times don’t recognize that up front until later they go, ‘I didn’t realize that.’” This clinician-centric culture was reinforced by a perceived lack of involvement of patients in designing health care, “There’s kind of a balance there, to get too far downstream of designing a solution without having a patient voice informing it . . . can often result in processes of redesign [that are ineffective].”

Patient–clinician partnership was expressed as the ideal:

You have the clinical team . . . experts in the clinical care. And then you have the patient, who are experts in themselves, in what’s important to them, in their values, and their goals. And if you bring these two together, I think you have a shared decision-making. If you don’t bring them together, you get into this spectrum, the paternalistic model, where the doctor just makes the decisions for the patient and the consumer model, where you just draw up [choices] to the patient and let them choose.

For a change from a predominantly clinician-centric culture to a clinician–patient partnership to occur, participants expressed the importance of patients and caregivers being actively engaged in designing care and becoming active partners in, rather than passive recipients of, care, “ . . . engaging patients and families in their care so that there’s a better alignment between the doctors that they are encountering.” Another participant noted, “ . . . do we want to encourage and empower and engage families to become at least a partner in that case management, if not, do they own it?” However, clinicians also, “. . . have to feel like this is relevant to them and it’s their problem to solve . . . ” In addition to patient–clinician partnerships, improved relationships among clinicians were deemed essential; this in turn required reducing the number of clinicians who work together (Table 2).

Table 2.

Health Care–Related Cultural Factors Contributing to Burdensome, Fragmented Care of Older Adults With Multiple Conditions and Recommended Changes.

Themes	Exemplary quotes
Health care–related cultural contributing factors
Current health care culture is a barrier to change	“I think I wrote culture down in my notes about 14 times while you’re speaking. So, I just don’t know if there is any way to get around that issue.” (Caregiver)
Current health care culture is a barrier to change	“How do you penetrate so many of these different unique cultures at so many different levels? and we probably will have no real influence on groups that don’t think that they have a problem.” (Specialty physician)
Physicians believe they know best what patients should do	“ . . . this is a quote from a physician, but similar quote came from multiple interviews” [from a study the participant had been involved in], “I think my biggest concern is if I convey the risk too strongly, that they will choose or make an unwise decision and not proceed with therapy.” (Primary care physician)
Specialists recommend, and patients want, care that is inconsistent with their goals and preferences	“ . . . communicating those goals to the specialist and [ensuring] those goals are being respected and acted upon by the specialist . . . primary care gets frustrated. Our patients would prefer to see specialists who recommend procedures and tests that are not consistent with [their] goals. And patients often times don’t recognize that up front until later they go, ‘I didn’t realize that’.” (Primary care physician practice design and quality expert)
Patients are not involved in redesigning health care	“ . . . to get too far downstream of designing a solution without having a patient voice informing it . . . can often result in processes of redesign [that are ineffective].” (Patient advocate)
Recommended cultural changes
Patient and clinician partnership with clinicians being the experts in clinical care and patients being the experts on themselves (their goals and values)	“You have the clinical team that could be nurses or doctors, experts in the clinical care. And then you have the patients, who are experts in themselves, in what’s important to them, in their values, and their goals. And if you bring these two together, I think you have a shared decision making. If you don’t bring them together, you get into this spectrum, the paternalistic model, where the doctor just makes the decisions for the patient and the consumer model, where you just draw up [choices] to the patient and let them choose.” (Primary care physician)
Patient engagement and activation is necessary for redesigning the roles of clinicians and patients and aligning care with what matters to patients	“But the patient has to be activated enough through social marketing [and] through community role modeling for new social impact to know that they have permission to ask these questions or permission to be engaged in this conversation the way that maybe some people don’t feel empowered to do it at this point.” (Primary care APRN)
	“I think it’s really using some sort of simplified language and really talking about engaging patients and families in their care so that there’s a better alignment between the doctors that they are encountering.” (Patient advocate)
Health system and clinician leadership are essential to ensuring a cultural shift	“So the physician leader of that specialty organization needs to reach out to their other physician leaders.” (Payer)
	“ . . . clinicians have to feel like this is relevant to them and it’s their problem to solve . . . ” (Primary care physician health system expert)
	“ . . . allow people then to at least meet the goals of organization in terms of their mission rather than just what the Federal government is going to reimburse or what the health insurance is going to reimburse.” (APRN)
	“If the senior leadership at the institute isn’t really interested in supporting it, it’ll be hard to align incentives for primary and specialty care [working] together.” (Specialty physician)
Primary care and specialists need to have a relationship and trust each other	“Well as a patient I think it’s really important to have a relationship between the primary care physician and the specialty care physician so that they trust each other, respect each other.” (Patient)
Reducing the number of clinicians who interact could improve their relationships	“ . . . independent primary care groups found that it was essential that they have to sort of narrow down the number of people that they work with. So they actually use this compact to establish better relationships . . . ” (Primary care physician)
Both clinicians and patients need preparation and training to move to decision making based on patients’ goals and preferences	“Actually its communication training . . . although communications probably the core what we all do and it’s so important we spend very little time doing development work around basic communication skills.” (APRN)
	“ . . . this is going to require a certain level of public education . . . there is going to be that awareness shift to that it’s going to be a component of this . . . ” (Patient and caregiver discussing that patients’ goals should inform clinical decision making)

Concerns With Content of Clinical Decision Making and Needed Changes

Participants acknowledged that the multiple conditions themselves caused burden as do coexisting psychosocial and environmental factors. Beyond these inherent contributors, however, participants felt that the emergence of ever more complex treatment regimens, including medications, added to burden. Participants felt that decision making and care should acknowledge that people with multiple conditions vary in what matters most when faced with trade-offs, “ . . . there is not universal agreement about weighing the two sides of the trade-off. We’ve seen the variability in terms of people choosing what health outcomes are more important to them.”

Participants also mentioned clinicians following disease guidelines and focusing on numbers at the exclusion of patient’s preferences. As one clinician articulated, “But the way practice is currently done is felt by many to get in the way of [what] they [clinicians] really want to get to [with their patients] . . . [the focus is on] the numbers . . .”

The primary change in clinical decision making for persons with multiple conditions involved patients’ own health outcome goals and preferences informing decision making and care. This theme incorporated identifying the trade-offs inherent in living with (patients), and caring for (clinicians), multiple coexisting conditions, and learning to translate each patient’s outcome goals and preferences into treatment decisions, “ . . . it should be easy. We should be able to ask patients what’s most important to them and then choose the treatment option that will provide that outcome . . . ”

The clinician participants also noted the importance of allowing clinical decisions inconsistent with current disease guidelines, “ . . . empowering patients to make decisions that are inconsistent with what our current guidelines say we ought to be doing for patients.” They also expressed the need for evidence of treatment effectiveness that included quality-of-life-related outcomes (Table 3).

Table 3.

Limitations of the Current Content of Clinical Decision Making and Needed Innovations for Care of Older Adults With Multiple Conditions.

Themes	Exemplary quotes
Limitations of the current content of clinical decision making
Burden comes from combination of conditions, treatment regimens, psychosocial and other factors (treatment regimens are a source of burden)	“They are worse in the sum in the burden of care . . . multiplied by the presence of comorbidities and other psychosocial barriers . . . ” (Payer)
	“I think there are a lot of people walking around really feeling that it’s their medication regimens are either making them feel [bad] today or the burden associated with those regimen is too high.” (Primary care physician)
People with multiple conditions vary in what matters most when faced with trade-offs (trade-offs inherent with multiple conditions; persons with multiple conditions vary in their health outcome priorities)	“ . . . preferences matter when there’s a trade-off; we’ve talked about all the trade-off that people with multi-morbidity face and that there is not universal agreement about weighing the two sides of the trade-off. We’ve seen the variability in terms of people choosing what health outcomes are more important to them.” (Primary care physician)
The clinical focus is on following disease-specific guidelines and numbers (disease guidelines may cause burden and may not focus on what matters most to patients)	“That’s another layer I think of complexities that makes us operate in inside those [disease guidelines] you know and some things are very, very redundant with patients and then some of the really important things never get done or talked about.” (APRN)
	“But the way practice is currently done is felt by many to get in the way of they [clinicians] really want to [sic] get to [with their patients] . . . [the focus is on] the numbers . . . ” (Primary care physician practice design and quality expert)
Recommended innovations in content of clinical decision making
Clinicians need to know patients’ and caregivers’ priorities, goals, and preferences (persons with multiple conditions vary in their health outcome priorities; the health care team needs to know these priorities)	“What we’re trying to get at is how do we have those conversations so that patients and families can let you know those preferences.” “ . . . we do need to keep in mind that just because I say today I want this, doesn’t mean that that shouldn’t be revisited as I go through another complication . . . You can’t assume they’re static.” (Family caregiver)
	“I think it’s really important for both members of the team to let each other know what their priorities are and what are the risks; it’s a risk-benefit ratio decision.” (Patient)
Patient goals and preferences should inform treatment decisions (persons with multiple conditions vary in their health outcome priorities)	“ . . . there’s very clearly correlation between patient values and what they want from in terms of . . . their treatment decisions . . . but then we’re not always very effective at managing the intersection of those things in a conversation.” (Payer)
Clinicians and patients need to identify and address the inherent trade-offs when there are multiple conditions present (trade-offs inherent with multiple conditions)	“So as I had said, preferences matter when there’s a trade-off. I think that I demonstrated why for our older patients who have multiple chronic conditions and lots of decisions come with the trade-off.” (Primary care physician)
	“ . . . it should be easy. We should be able to ask patient what’s most important to them and then choose the treatment option that will provide that outcome.” (Primary care physician)
Allow clinical decisions inconsistent with disease guidelines (disease guidelines may cause burden and may not focus on what matters most to patients)	“ . . . it actually allowing patients and empowering patients to make decisions that are inconsistent with what our current guidelines say we ought to be doing for patients.” (Primary care physician)
Need evidence of quality of life to inform treatment decisions	“We need to have a quality of life in our decision tools. It’s hard because there’s not a lot of data and when you start presenting information and tools and you can’t support it . . . ” (Primary care physician)

Discussion

The multistakeholder advisor groups reported structural, cultural, and decision-making problems contributing to inappropriate care for older adults with multiple conditions. Not surprisingly, the fee-for-service reimbursement model that rewards more, not always better, services was deemed a key problem. But value-based and alternative payment models (APMs) were also judged unlikely to improve care unless the right metrics drive these models. Disease-based metrics alone contribute to burdensome care and conflicting recommendations across clinicians and may not focus on what matters to persons with multiple conditions. The need to visit multiple clinicians to access their expertise and the lack of articulated roles and responsibilities were other important structural problems. The advisors stated that structural and payment innovations were likely to improve care for persons with multiple chronic conditions only if accompanied by changes in the culture and content of decision making. The assumption that clinicians know best what patients should want was the major cultural issue, whereas the focus on following multiple disease guidelines and insufficient attention to the inherent trade-offs faced by patients with multiple conditions were key decision-making limitations needing reform.

Recommended Structural, Cultural, and Decision-Making Changes

Replacement of disease-centric with patient-centric quality metrics such as incorporating patents’ preferences into decision making and ascertainment of treatment burden and functional status were deemed essential to promoting appropriate care. Redesign of clinical workflow, including alternate methods of interaction among clinicians and between clinicians and patients was deemed essential to reducing burden and fragmentation. Pham and Bynum quantified the fragmentation of care resulting from involvement of multiple clinicians (Bynum et al., 2016; Pham, O’Malley, Bach, Saiontz-Martinez, & Schrag, 2009). Investigators also chronicled the eroding interactions and lack of accountability among multiple clinicians (Cheung, Neville, Cameron, Cook, & Earle, 2009; Stange, 2012; Zuchowski et al., 2015). Existing practice redesign innovations such as Medical Neighborhoods and compacts have the potential to improve the quality of interactions among clinicians (Greenberg, Barnett, Spinks, Dudley, & Frolkis, 2014). Telemedicine and e-consults, along with appropriate use of other technologies can reduce burden and fragmentation by decreasing the number of health care visits patients must make while still maintaining access to needed expertise (Wasfy et al., 2016). To further address fragmentation and lack of clarity in responsibility, stakeholders recommended that patients and clinicians interact with a smaller network of clinicians and for one clinician to assume the role of “quarterback.”

Decision making and care directed by patients’ specific health outcome goals, not just disease guidelines, were the primary recommended change in the content of care. The suggested refocus from managing, measuring, and paying for individual disease-specific outcomes to determining and acting on each patient’s health outcome goals and care preferences is supported by evidence that patients, particularly those with multiple conditions, look to health care as a way to achieve more general life goals, not merely disease-specific outcomes (Fried et al., 2008; Fried et al., 2011; Naik, Martin, Moye, & Karel, 2016). Furthermore, data show that older adults when faced with the trade-offs inherent in treatment of multiple coexisting conditions, vary in the outcomes that matter most to them and the activities they are willing and able to complete to achieve these outcomes (Case, O’Leary, Kim, Tinetti, & Fried, 2014; Fried et al., 2008; Fried et al., 2011; Naik & McCullough, 2014; Tinetti, McAvay, Fried, Allore, Salmon, Foody, & Fraenkel, 2008). Previous studies also document the complexity and burden that patients face as they manage their multiple chronic conditions (Bayliss, 2012; Boyd et al., 2014; May et al., 2014; Tran et al., 2014).

The move from “Doctor knows best” to a true partnership between clinicians and patients was a cultural shift regarded essential to improving care and outcomes for this important patient population. The importance of patients and their caregivers as active partners in care and decision making has been well chronicled (Elwyn et al., 2012; Greene & Hibbard, 2012; Rathert, Wyrwich, & Boren, 2012). Participants in the current study described an ideal partnership as “ . . . patients are experts in themselves that is, their goals and values while clinicians are experts in clinical care.” Operationalizing this concept by encouraging clinicians to offer patients’ care options, most consistent with their health outcome goals and care preferences, can simplify decision making by negating the need to present the pros and cons of each potential option for each condition. Patient priorities–aligned decision making is perhaps the optimal approach to shared decision making for patients facing multiple decisions with every clinical encounter (Elwyn et al., 2012). As most patients and clinicians currently do not interact in this way, the advisors agreed that both patients and clinicians needed preparation and training to move from disease-based to patients’ goals and preference–aligned decision making.

Limitations

Although efforts were made to enlist broad participation, we cannot determine whether the participants were representative of their stakeholder group. Furthermore, there were small numbers of individuals from each group. By design, all the advisory groups included patients, caregivers, clinicians, and other stakeholders. We cannot, therefore, report or compare findings by stakeholder group, although we do note the stakeholder group for each exemplary quote. This limitation, however, is balanced by the ability to get the simultaneous perspectives of the many groups affected by health care for patients with multiple chronic conditions. As this was a qualitative study, we cannot determine the relative importance of the identified factors or needed innovations. We did not intend that the advisory groups would produce exhaustive lists of possible contributing factors or needed innovations. There likely are additional factors and elements that could be addressed through redesign, training, changed expectations, and appropriate incentives.

Health Policy Implications

Health care delivery and payment innovations aim to improve structural coordination and/or reduce unnecessary care. These innovations, with the exception of those for persons near the end of life, remain largely focused on managing individual diseases. Our findings suggest that the effect of structural and payment innovations could be enhanced for persons with multiple chronic conditions by also changing the culture and content of care via a move from a disease-based to a patient health priorities platform (Tinetti, Fried, & Boyd, 2012; Tinetti, Naik, & Dodson, 2016).

Aligning care with each patient’s health outcomes and care preferences has great potential for reducing the delivery of low-value care. This approach is less likely to be misinterpreted as rationing than other strategies for reducing unnecessary care because patients actively prioritize their own health outcomes and the treatment options they are willing to accept to achieve these outcomes (Ubel, 2015).

Advanced care planning payments encourage the discussion of patients’ goals for future care (Centers for Medicare & Medicaid Services, 2015). However, much of patients’ current care is also inconsistent with their outcome goals or preferences. Financial and nonfinancial incentives should encourage and enable clinicians to elicit patients’ current health priorities, adjust care accordingly, and integrate that care across conditions and clinicians.

The perspectives of our diverse advisors could inform pending MACRA implementation (Centers for Medicare & Medicaid Services, 2016). Although the move from volume-based fee-for-service payment to value-based and APMs holds promise, it is not clear that much attention was given to the needs of the sizable proportion of Medicare and Medicaid benefices with multiple chronic conditions. First, if the quality metrics for both the Merit-Based Incentive Payment System (MIPS) and APMs remain focused on a plethora of disease-specific measures, the unintended consequences of burdensome care, conflicting recommendations, and lack of attention to the outcomes that patients care about, seem likely to continue. Although still in evolution, measures of treatment burden and patient goal ascertainment and achievement are increasingly feasible. The required use of such metrics, particularly for APMs, should drive their development and implementation.

To accomplish the aim of MACRA to improve the quality, and reduce the costs, of health care, strong consideration should be given to APMs targeting the large proportion of adults with multiple chronic conditions—the major users of health care. These individuals will be ill served by models not predicated on aligning care around their specific health priorities.

Next Steps

Following the recommendations of the advisory groups, we built a prototype for older adults with multiple conditions that aligns health care across clinicians and diseases with patients’ health priorities (Tinetti, Esterson, et al., 2016). The components are displayed in Table 4. We developed training for patients, their caregivers, and clinicians in eliciting patient’s health priorities and providing care aligned with these priorities. The next steps include incorporating this care into the workflow in a primary care–based ACO, testing its feasibility and effectiveness.

Table 4.

Components of a Proposed Patient Priorities–Aligned Model of Care for Older Adults With Multiple Conditions.^a

Structural components^b

● Quality metrics^c

○ Goals of care and patient education

○ Fewer unwanted services

○ Health-related quality of life

○ Shared decision making

○ Patient-reported outcomes (PROs) including symptom burden, treatment burden, functional status

● Patient priorities aligned workflow

○ One clinician identified as quarterback

○ Roles and responsibilities of primary care and specialty clinicians defined and agreed upon for each patient

○ Use of e-consults when possible to reduce number of visits and clinician contacts

○ Patient priority-based Electronic Health Record (EHR)

■ Patient’s elicited health outcome goals and care preferences displayed in easily accessible location in EHR

■ Patients and caregivers access their health outcome goals and care preferences, and care plans and carry them with them for all clinical encounters

■ Patient priorities-based templates for referrals and clinical encounters

○ Close working relationships and referrals to relevant community organizations and resources

Cultural components

● Patients with multiple chronic conditions and their caregivers are active participants in health care design

● Health care system leadership supports patient health priorities aligned model of care

● National specialty organizations support bridging disease-based and patient health priorities–based decision making

● Clinical champions in primary care and specialties

● Understanding and communication between clinicians is improved

● Patients and clinicians are trained in, and prepared for, patient priorities aligned decision making and care

○ Patients are helped to construct their specific, measurable, actionable, reliable, and timebound (SMART) outcome goals and care preferences and are trained in communicating with their clinicians and other providers to ensure care is aligned with these outcome goals and care preferences

○ Clinicians are trained in translating patients’ outcome goals and care preferences into care options and in goals- and preference-based current care planning and in patient priorities–based communication with patients and other clinicians

Clinical decision-making components

● Patient’s health priorities (health outcome goals and care preferences) are elicited by a trained and skilled member of the health care team) and transmitted to all clinicians and providers caring for patient

● Patient priorities–based shared decision making

○ Identify trade-offs available to meet priorities of patients

○ Translate patient outcome goals and care preferences into concrete treatment decisions

○ All decision aligned with each patient’s specific health outcome goals within the context of their care preferences, combination of health conditions, and health trajectory

● Clinicians provide care not consistent with disease guidelines if this care would be inconsistent with patient priorities

Note. ACO = Accountable Care Organizations; PCMH = Patient Centered Medical Homes.

Based on the perspectives and input of patients, caregivers, primary and specialty clinicians, health system leaders, health care design experts, health information technology experts, and payers.

This model assumes necessary financial incentives such as integrated health system or risk sharing.

From list of Future Areas for ACO and PCMH/Primary Care Measure Development from the Consensus Core Set: ACO and PCMH / Primary Care Measures Version 1.0. Accessed at https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/QualityMeasures/Downloads/ACO-and-PCMH-Primary-Care-Measures.pdf

Conclusion

Bringing together representatives across a diverse set of stakeholders in an environment which encouraged and supported open discussions, allowed us to build an innovative approach to care of adults with multiple conditions. The core innovation is a refocus from merely treating individual diseases to determining and acting on each patient’s health priorities, that is, their health outcome goals and care preferences. Indeed, participants felt that the only target that could align care and, thus, reduce burden and fragmentation for persons with multiple conditions was their actionable health outcome goals. This target becomes particularly important when considering that individuals, when faced with the trade-offs inherent in treatment of multiple coexisting conditions, vary in the outcomes that matter most to them and in the activities they are willing and able to complete to achieve these outcomes. When coupled with financial and nonfinancial incentives, redesigns recommended by the diverse group of stakeholders that incorporate patients’ health priorities into all care decisions and realign relationships across patients and clinicians, have the potential to achieve better outcomes, reduced costs, and enhanced patient and clinician experience.

Footnotes

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by grants from the John A. Hartford Foundation and the Patient-Centered Outcomes Research Institute and by the Yale Older Americans Independence Center (P30AG021342).

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