The American Heart Association Heart Failure Summit, Bethesda, April 12, 2017: Proceedings and Calls to Action

Abstract

The American Heart Association (AHA) convened a meeting to summarize the changing landscape of heart failure (HF), anticipate upcoming challenges and opportunities to achieve coordinated identification and treatment, and to recommend areas in need of focused efforts. The conference involved representatives from clinical care organizations, governmental agencies, researchers, patient advocacy groups and public and private healthcare partners, demonstrating the breadth of stakeholders interested in improving care and outcomes for patients with HF. The main purposes of this meeting were to foster dialog and brainstorm actions to close gaps in identifying people with or at risk for HF, and reduce HF-related morbidity, mortality and hospitalizations. This report highlights the key topics covered during the meeting, including 1) identification of patients with or at risk for HF, 2) tracking patients once diagnosed, 3) application of population health approaches to HF, 4) improved strategies for reducing HF hospitalization (not just re-hospitalization), and 5) promoting HF self-management.

Summit Goals and Objectives

The American Heart Association (AHA) convened diverse stakeholders and key thought leaders on April 12th, 2017 to address the large health and economic burden of heart failure (HF).¹ Over 30 different constituencies participated in the meeting, including patient advocacy groups, government agencies, researchers, and healthcare systems representatives (see appendix for list of attendees and organizations represented). This demonstrates the breadth of stakeholders that are interested in improving care and outcomes for patients with HF. Participants shared views and discussed ways to improve care for patients with HF, reduce hospitalizations, address disparities, and increase patient, provider and public awareness. The summit focused on the following key topics: 1) identification of patients risk for HF (Stage B) and those with undiagnosed HF, 2) population health through tracking of HF patients and their treatment, 3) reducing hospitalizations through optimizing the care delivery continuum, and 4) self-management. The overarching objectives of the meeting were to make HF a national priority, support the AHA goal to reduce death and disability from heart disease by 20%, support the AHA Rise above HF goal to reduce HF hospitalization by 10%. Attendees were advised not to consider cost or limit potential interventions to those that are easily implemented. Each topic is introduced followed by priorities for action.

Identification and Treatment of Patients with Stage B Heart Failure

Stage B HF, defined as any cardiac structural abnormality without signs or symptoms of HF, is highly prevalent.² In the ARIC study, Stage B HF was prevalent in 30% of the population aged 67–91 years and in Stage C, two thirds of adults had preserved EF. ³ Multiple interventions are known to prevent progression from Stage B to Stage C HF. However, because of the absence of signs or symptoms, Stage B HF is often unrecognized and untreated.

In practice, our ability to identify Stage B HF is limited. Studies have found that screening for asymptomatic LV dysfunction using echocardiography is not cost-effective.^4,5 Current guidelines provide a IIa recommendation for natriuretic peptide biomarker-based screening followed by team based care and optimization of GDMT for patients at high risk of developing HF.^2,6,7 Studies have shown that with BNP screening of high-risk populations, asymptomatic LV dysfunction can be as high as 15 to 20%. Screening with Life’s Simple 7 has shown some promise for predicting incident HF.⁸ Future research is needed to identify cost-effective screening strategies that can easily be implemented to identify these patients.

Patients with Stage B HF are generally cared for in the primary care setting, so educational efforts must focus on primary care providers to improve recognition and treatment of Stage B HF. Once structural abnormalities are recognized, medications should be optimized and team based care implemented. It was widely recognized by conference attendees that it is not possible for all stage B patients to be referred to cardiologists. Thus, there is a need to provide knowledge, support and resources to primary care doctors. This may be done through direct education, or perhaps even a HF certification. Suggested action items are listed in Table 1.

Table 1.

Identification and Treatment of Patients with Stage B Heart Failure

1.	Better define cost-effective screening strategies that can easily be implemented to identify stage B HF among high-risk patients.
2.	Develop programs for front-line/primary care providers to increase awareness of Stage B HF and provide education about risk factors, screening and treatment options.
3.	Define algorithms to detect early Stage B HF that are overall cost-effective.
4.	Develop closer relationships between the AHA and primary care societies, such as the American Association of Family Physicians and the American College of Physicians.
5.	Create a HF certification program to help front-line/primary care providers become facile with the recognition and treatment of early-stage HF.

Identification of HF Symptoms (Stage C)

Many patients categorized as Stage B – structural abnormalities with no symptoms – do in fact have unrecognized symptoms. In some cases, symptoms may be incorrectly attributed to other issues, such as pulmonary or gastrointestinal disease, particularly in younger populations for whom HF is not as prevalent. ^9,10 Delayed diagnosis can also happen because patients alter their activity or stop doing things that trigger symptoms. Particularly among older patients, symptoms may be considered normal aging. Asking the right questions is helpful in discovering symptoms in disguise. For example, asking patients to compare their activity and performance five years ago with the present. What differences do they see? Eliciting symptoms when present is important because it provides additional targets for treatment to help avoid hospitalizations and can provide greater motivation on the part of patients to follow recommendations.

Summit participants discussed the terminology used to label individuals with a spectrum of structural abnormalities and clinical signs and symptoms – “heart failure.” This term may be frightening for patients and connotes a sense of hopelessness or “failure.” In some cases, the patient may perceive this as a failure on their part. This is important to consider, as positive reinforcement and positive approaches encourage people to engage in desired behaviors.

Patients with HF with preserved ejection fraction (HFpEF) are often not identified as such because they are admitted with other comorbidities such as hypertension or diabetes.^11,12,13 Admissions can easily be ascribed to the comorbidities while the HFpEF diagnosis remains elusive. The reasons for volume overload can be varied and difficult to identify. For example, atrial fibrillation can present as simply an arrhythmia or may be masking HFpEF. While focusing on treatment and control of atrial fibrillation, providers may overlook HFpEF. Addressing underlying risk factors, managing volume status and patient education are critical for this group of patients who are often older, complex and challenging to manage. Suggested action items are listed in Table 2.

Table 2.

Identification of HF Symptoms (Stage C)

1.	Create, test and validate a questionnaire or survey instrument to screen for HF that could be widely implemented. Questions should differentiate HF from normal aging, with a focus on “HF in disguise” so that patients are prompted to seek medical care and clinicians are prompted to evaluate and test for HF.
2.	Encourage a lower threshold for ruling out HF, particularly as tied to pre-test probabilities.
3.	Launch local and national public health campaigns to increase awareness of signs and symptoms of HF and encourage people to talk to their healthcare provider. This may help identify patients who may not otherwise come to the attention of the healthcare system.
4.	Put a human face on what HF looks like by having patients tell their stories of living with HF.
5.	Avoid indiscriminate use of the term “failure”, with consideration for renaming the syndrome of HF in terminology that optimally motivates positive health behaviors.
6.	Educate providers about HFpEF, including: a) it is common, b) outcomes are poor, c) it is highly prevalent among specific demographic groups, and d) it is responsive to good preventive care and careful fluid management.

Population Health: Systems to Identify and Track Patients with Heart Failure to Optimize and Target Therapies

Population health targets all patients in a health system with a given condition to facilitate care outside of the patient-provider interaction. Population health should be applied to all stages of HF and should be viewed as complimentary to traditional patient-provider encounters.^14–16 To provide population health care, the health system needs to link electronic data and develop algorithms for identification of patients with HF. For example, patients may be targeted for outreach if they are found to be non-adherent to appointments or medications, or have a rapidly progressive course, as identified by frequent utilization. Safety monitoring of medications (e.g. for hyperkalemia or renal insufficiency) is another area well suited to population health. Providers may be the outreach focus if care does not appear to be consistent with current guidelines, or if referral to a higher level of care should be considered (e.g. HF specialist).

Participants discussed the importance of using system level identification and tracking of patients with HF through the course of their disease. Participants agreed that tracking all four stages of HF – A through D – would facilitate optimal treatment. Stages A and B have a longer time horizon and greater opportunity to intervene to prevent progression. Stages C and D are more focused on active treatment, symptom reduction, and avoidance of hospitalization. Automated identification of patients with HF in real time in conjunction with treatment pathways will assist in patient care, targeting of therapies and measuring quality of care.^17–19

The poor availability of the left ventricular ejection fraction (LVEF) in the electronic health record was identified as a critical systems issue given that LVEF is central to guiding many HF care options. Beyond LVEF, care options are often related to where patients are in the course of their disease. Anticipating the clinical course is critical, particularly as a patient approaches end-stage disease, when major treatment options may be available for some and others should begin to prepare for the final stage of life. However, patients are often referred too late for advanced therapies including mechanical assistance and transplant. Improved tracking and recognition of patients who are progressing from Stage C to D are needed to implement advanced therapies before patients are too sick to consider them. Multiple risk models have been developed that quantitatively recognize key clinical data associated with near-term death.^20–22 Fortunately, these data elements (e.g. hypotension, renal dysfunction, elevated natriuretic peptides) are reasonably parsimonious, well understood, and adequately predict risk across all populations. Yet, these data tend to be haphazardly applied or unappreciated in routine care.^23–25

Attendees of the HF summit discussed the financial issues with population health. It was recognized that in the current fee-for-service environment, there is limited funding for population health. However, population health may improve performance on quality metrics and may be valued by administrators to the extent that such metrics are used for reimbursement or accreditation. A switch to risk sharing or full capitation will increase the value of population health if such care can keep patients out of the hospital. If the fee-for-service model persists, then a separate service (Current Procedural Terminology/CPT) code for population health interventions would be important to provide funding for these efforts. Regardless of the revenue model, the benefits of population health will need to be presented in ways that appeal to health system administrators. Implementation will ultimately depend on providers and patients understanding and supporting population health efforts to improve HF care. Suggested action items are listed in Table 3.

Table 3.

Optimize and Target Therapies

1.	Data systems need to link clinical, pharmacy and encounter data, and data science needs to be applied to develop algorithms that can be applied to care in real time that identify patients for whom there are opportunities to intervene to improve care and outcomes, including health status.
2.	A set of clearly outlined treatment pathways (at an institutional level) should encourage providers and patients to think about high-value activities throughout encounters. The information should include consideration of diagnostic procedures, medical therapies, device therapies and lifestyle changes.
3.	Imaging software and electronic health records must require field coding of summary LVEF measurement (just as a systolic blood pressure or serum creatinine is recorded), which can then be used to identify certain patients and trigger appropriate care.
4.	Apply data science to develop risk models that can be automatically calculated and presented in electronic health records that in turn foster clear communication about prognosis and care considerations.
5.	Launch a targeted campaign aimed to educate providers who care for patients with HF, including cardiologists, primary care doctors and hospitalists about signs of progressing from Stage C to D.
6.	Data science should be applied to develop algorithms that can be incorporated into EHRs to facilitate identification of patients with a worsening trajectory who should be referred to a HF specialist for consideration of advanced therapies.
7.	Within networks of care, create different levels of expertise and coordination so that patients receive the appropriate level of care.

Reducing HF Hospitalizations and Optimizing the Care Continuum

Hospitalizations are key points in the trajectory of disease, representing worsening disease. Hospitalizations are also costly and can adversely affect quality of life.^26–29 Reflecting this, HF hospitalizations have been the focus of several pay for performance initiatives, with the aim of increasing quality of care and reducing costs. While important for future care, these approaches (e.g. focus on reducing 30-day readmissions) tend to lack a holistic, longitudinal approach to HF care. Conference attendees discussed a more longitudinal approach to care delivery that focuses on health status and functional outcomes in the context of patient preferences. They identified core components of existing processes of care, how those could be optimized and also considered novel ways to deliver care to patients with HF.

Participants also emphasized that care delivery must take into consideration the individual. Specifically, differences in: age, gender race, disease severity, comorbidities and medication tolerance. Individual patients have many different needs, attitudes, beliefs, literacy levels, socio-economic issues, coping skills, financial constraints, family influences, and personal preferences. Summit attendees discussed how existing core components of care and novel strategies of care delivery could be successfully delivered in the context of these issues, constraints, and preferences.

Optimization of Core Components of Current Processes of Care

• Medication Reconciliation. Medication reconciliation is expected prior to discharge from the hospital and at each outpatient visit. This is an important process that provides an opportunity to address polypharmacy, assess patient understanding of how to take medications, provide patient education, and encourage medication adherence. Medication reconciliation is also critical for optimizing GDMT. However, time pressures on physicians limit thorough and effective medication reconciliation. Conference attendees identified the need to engage more people who have adequate knowledge to perform medication reconciliation and provide patient education around medications. This could include pharmacists, medical assistants, and advanced practice providers.

• Timely Post-Discharge Visit: Participants agreed that this is a critical visit. Patients are particularly vulnerable in the early period following discharge from the hospital. Medications and care plans can become confusing in the transition of care and particularly with multiple providers. Follow-up within 7 days should be scheduled to: assess clinical status; perform relevant laboratory tests to assess medication safety and clinical status; review medications and up-titrate doses as appropriate; review activity recommendations; discuss any additional tests or medications that might be appropriate; and reinforce self-care. ³⁰

• Subsequent Follow-Up Visits. Participants discussed the importance of follow-up visits to optimize treatment, which often cannot be achieved during hospitalization. Getting the right patient on the right drug at the right dose should be the goal, while considering comorbidities, patient’s goals of care, their family and their finances. Additional core components for good follow-up for HF include patient education, medication reconciliation, and symptom assessment and management.

• Multidisciplinary Clinic Teams. Multidisciplinary teams are not uncommon in the hospital, but are not universal in the outpatient setting. Clinics should consistently have access to multidisciplinary professionals, including: pharmacists, nutritionists, social workers, case managers, substance abuse counselors, palliative care specialists, chaplains and behavioral health providers such as psychologists and psychiatrists.^31–34

• Population Health Management. Although a core component of care in some systems, population health management is not universally applied to HF. It is important to move towards population health management.

Novel ways to deliver care

• Non-Medical Care Providers. Increase use of layperson navigators. Train people from the community.

• Virtual Visits. Redesigning the system to include telemedicine and virtual visits as part of the overall standard of care.

• Use Mobile Health Self-Monitoring Tools. Use Skype, cellphone applications, or telecare methods to communicate with patients who use self-monitoring tools. This model would require innovation for teambuilding and reimbursements for telecare, e-mail, and app use.

• Better use of Electronic Health Records for Information Sharing. Better communication among providers, patients, hospitals and health systems would enable everyone to share the medical history and status of the patient. Medical records should be readily available and providers are enabled to directly and effectively communicate across systems and with the entire healthcare team.

• Medication Reconciliation Processes. An improved system that includes better communication and engagement with pharmacies is needed.

• Patient and caretaker engagement. Clinicians need to routinely engage and partner with patients and their families to achieve and maintain maximum tolerated guideline recommended medical therapy.

• More Support for Primary Providers. Conference participants recognized that not all patients with HF can or will receive cardiology or HF specialty care. Thus, primary care providers need more support to manage HF in the context of all other medical issues.

• Incentivize Patients to take Responsibility for Self-Management. Getting patients to participate in self-management is a significant challenge. Self-management is critical to keeping patients out of the hospital. Insurance companies could reduce patient copayments for achieving desirable goal-oriented health outcomes.

• New Payment models: Payment models need to address tele-health, including video conferencing, care coordination, and population-level prevention.

Suggested action items are listed in Table 4.

Table 4.

Reducing HF Hospitalizations and Optimizing the Care Continuum

1.	Train and incorporate lay-person navigators into care processes.
2.	Enable all health care providers to practice at the top of their license, including nurses, pharmacists, nurse practitioners, and physician assistants and utilize their expertise for processes such as medication reconciliation, patient education, patient engagement and virtual visits.
3.	Develop and test strategies to increase patient and caretaker engagement.
4.	Define and test “distance-health” methodologies such as virtual visits. Realign provision of care and the payments for care to allow for more flexible effective care models that utilize remote monitoring technology.
5.	Develop population health interventions such as system alerts for missed prescription refills. Systems with the capability to notify pharmacists, patients, or providers about missed prescription refills create an opportunity to engage patients in a conversation about what barriers they might be facing.
6.	Develop and test strategies to incentivize patients to take responsibility for self-management.

Self-Management

HF self-care is a complex process, as it requires an understanding of three concepts: 1) the self-care behaviours of daily living and how to carry them out, 2) how to monitor and recognize new or worsening signs and symptoms of HF, and 3) what actions to take to relieve or minimize symptoms (self-management).³⁴ As a strategy to improve HF outcomes, self-care behaviors and self-care management are often not be adequately used by patients and caregivers.^36–38

Patients must be engaged consumers of self-care who take action and, importantly, stay on course under stress. Although there are many models of enhancing self-care, two models of interest were patient activation and shared decision-making. Higher patient activation leads to improved clinical outcomes.^39–40 Shared decision-making provides a reminder that patients are in control of their health, not providers. It is important to think about HF in the context of patients’ daily lives (and their goals), rather than as a medical condition with one path of treatment and without life context. Patients are independent providers of self-care the majority of time.

Participants acknowledged the importance of recognizing physical, transportation, and financial limitations of patients. Further, developing cultural competence is critical to teaching self-care so that treatment recommendations can be more consistent with a patient’s cultural beliefs and values. Patient education should begin in the hospital, should be in consumable formats such as videos, podcasts, or booklets that are acceptable to patients in language, format and readability. Patients can feel overwhelmed with too much information about their diagnoses, treatments, medications, provider recommendations and lifestyle changes. Focusing on one or two aspects of treatment or medications for the first few months and then building on those in later visits can be less stressful on the patient. Summit attendees identified the following strategies to improve patient engagement:

• Clarify and take into account patient goals. Recognize what patients want to do, whether or not they want help, and if they have competencies for tasks.

• Empower patients. Empowerment related to treatment changes may increase engagement and enhance control in the treatment regimen.

• Self-Management Tools. Provide guides or tools that are culturally competent and appropriate for the patient’s health literacy level to enable patients to carry out self-monitoring, self-maintenance, and self-management.

• Tie Adherence to Positive Feelings. Positive reinforcement that associates actions with positive consequences may improve patient engagement and adherence. Language such as “If you do this, you will feel better,” works better than tying a missed action to a negative consequence, such as “This action might result in hospitalization.”

• Recognize Patient Barriers and Tailor self-care plans accordingly. Recognize barriers that patients face in their communities and life circumstances. For example, finding healthy places to eat or exercise be difficult or impossible in some cities or locations.

• Ask Patients about Affordability. Affordability may affect many aspects of self-management, including food choices, medication adherence and adherence to appointments.

• Patient-to-Patient Teaching. Encourage patient-to-patient teaching. Sometimes hearing the story of someone who has experienced HF is very powerful and inspirational.

Finally, participants expressed a vision for home visits to facilitate self-care. Strategies for self-care (such as medication data sheets that include a picture of the medicine, the brand name, the generic name, and a time schedule of when daily medications should be taken) are generally given to patients in the clinic setting. However, on a home visit, providers can better assist with reviewing foods in cupboards and setting out a strategy to increase adherence to medications. Further, it is important engage family and caregivers and teach them about HF self-care. Suggested action items are listed in Table 5.

Table 5.

Self-Management

1.	Develop a program to certify HF educators that provides techniques for engagement and education such as motivational interviewing and “teach back.”
2.	Shared (group) medical appointments can be useful and may increase interactions and depth of discussion.
3.	Consider incorporating home visits. Visiting patients in their home can give a more accurate perspective on home circumstances and lifestyle.
4.	Virtual Visits for Home Care. Virtual (distance health) visits may increase patient engagement in care and ease the burden of seeking healthcare provider support, especially for the elderly and other vulnerable or frail adults. Virtual visits need to be included in our reimbursement model; CPT and E&M code need to be defined to incentivise virtual visits.
5.	Create Technology Platforms for Patient Groups and Discussions. Technology platforms such as email, apps, and websites could enable patients to ask questions, discuss issues, and form support groups. Use social media to invite people into support groups. The group might include clinicians or other providers, but meets outside of the typical clinical visit.

Limitations and Gaps

We recognize that with limited time, important topics were not specifically addressed or were only partially addressed and the need for further discussion and research in these areas. Prevention of HF is one important topic that was not discussed at all at the Summit due to limited time. New data is constantly emerging. For example, recent findings that the use of new agents in diabetes reduces the development of heart failure. These agents may have an important role in preventing HF in the future. Additionally, important outcomes such as mortality and health status were not specific topics for discussion, but were considered in each of the discussions around identification of patients with or at risk for HF, tracking patients once diagnosed, application of population health approaches to HF, strategies for reducing hospitalization, and promoting HF self-management. Indeed, one of the main purposes of this meeting was to foster dialog and brainstorm actions to reduce mortality and improve health status for patients with heart failure.

Summary

The diverse group of summit participants identified opportunities to improve care and outcomes and reduce disparities for patients with HF, focusing on: 1) identification of patients risk for HF (Stage B) and those with undiagnosed HF, 2) population health, 3) reducing hospitalizations, and 4) self-management. Key action items identified in each of these areas are summarized above. All of the stakeholders involved in the Summit are charged with doing their part to carry out the action items. In some cases, a given stakeholder may have a greater role; however, action from multiple perspectives from each of the stakeholders and strong partnerships between stakeholders will have greater impact. For each action item impediments to implementation will occur and may be present at multiple levels. It will be important to learn from the implementation challenges. Below are five key overarching action items based on themes identified across all topics and on overall importance for achieving the goals of making HF a national priority, reducing death and disability from heart disease by 20% and reducing HF hospitalization by 10%.

Figure 1. Summit Overview-.

Improving Care and Outcomes in Heart Failure

Disc, disciplinary; Disch, discharge; Med. Medication; Mgmt, management; Pop, population; Recon, reconciliation

KEY ACTIONS:

1. Develop and launch local and national public health campaigns to increase awareness of signs and symptoms of HF and encourage people to talk to their healthcare providers.

2. Define and test “distance-health” methodologies such as virtual visits. Realign provision of care and the payments for care to allow for more flexible effective care models that utilize remote monitoring technology.

3. Improve systematic collection of key factors such as LVEF in the EHR, link data systems (e.g. clinical, pharmacy, encounter data) and apply data science to identify patients with HF in real time, track patients longitudinally and recognize opportunities to intervene to improve care and outcomes, including health status.

4. Develop and evaluate interventions that can be applied at the population health level.

5. Develop and evaluate interventions to improve patient engagement and self-management.