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Depending on your perspective, a unicorn could be either a magical horned creature or a billion-dollar start-up. Alternatively, it could represent coordinated care for patients with heart failure with preserved ejection fraction (HFpEF), as it does for Brooman-White et al.1 In their accompanying paper on coordination of care for patients with HFpEF, which included an analysis of 12 clinical guidelines and secondary analysis of qualitative interviews with patients and healthcare professionals in the UK’s National Health Service, the authors describe the apparent illusiveness of securing coordinated specialist and generalist care for this complex patient group. However, by explicating when and why problems arise, Brooman-White et al offer hope that the pursuit of coordinated care is not really as illusive as the unicorn they describe it as, but rather an elusive challenge which requires renewed focus and strategies designed around the needs of patients who use these services. Challenging work conditions, issues with information transfer and unclear role expectations are shown by the authors to compromise the care of patients with heart failure across settings.1 But perhaps the most striking aspect is that the reality for most patients with heart failure is complexity characterised by multiple other long-term conditions and the effects of adverse social determinants of health, and the impact this has on healthcare delivery and experiences of care.
Focusing on the gap between work-as-imagined as portrayed in guidelines and work-as-done portrayed in qualitative interviews, Brooman-White et al show how the lived experience of coordinated care exacerbates treatment burden for patients with HFpEF. Heart failure specialists were uncomfortable with the messiness of patients’ multimorbidity and generalist primary care physicians lacked the specialist knowledge needed to optimally manage HFpEF. However, the ‘exchange of information among participants responsible for different aspects of care’1 was frequently undermined by differences in information technology (IT), communication and operating procedures between services and it was often patients themselves who had to bridge the divide. Beyond attempts at sharing information, the other shifts in operational systems and professional behaviour that are required to ‘do’ coordination had not occurred.1
Strikingly, the 12 guidelines reviewed by Brooman-White et al gave little attention to how coordination for complex multimorbid patients with HFpEF should be operationalised, when and by whom coordination work should be performed, and what resources might be needed to support it.1 For the few recommendations that were made, the structures to support this coordination work were lacking. For instance, guidelines apportioned responsibility for effective communication between different clinical services to primary care teams despite these teams not routinely having a seat at multidisciplinary team meetings.1 Slow, inert letter-based correspondence hindered the development of collegial relationships but better alternatives such as direct access email and real-time discussions with other professionals were not possible within current operational systems. Delivering coordinated personalised care presented specific challenges where patients received conflicting opinions from different services and were left feeling that they were getting second-rate, unequal care.
Almost all patients with heart failure have multiple long-term conditions and approximately half have at least six long-term conditions.2 Patients with multimorbidity live with the physical burden of their illnesses, but must also contend with the treatment burden associated with each condition.3 This burden includes the work of understanding and appraising treatments, arranging and attending appointments, overseeing and taking multiple medications, and enacting lifestyle measures.4 Single-disease guidelines, like those reviewed by Brooman-White et al, contribute to treatment burden by advising on medications, investigations and monitoring without considering coexisting conditions.3 In addition, despite strong associations between multimorbidity and negative social determinants of health such as poverty, unstable housing, food insecurity and environmental exposures, the additional struggles of managing illness experienced by patients with limited personal, social and material resources are rarely considered in the design of care pathways.5
The number of professionals involved in care coordination for older adults with heart failure varies from 3 to 32.6 This kind of fragmentation means it is incumbent on healthcare professionals to spend time learning a patient’s history, recent care and current needs and then adjusting their work to the work of other involved healthcare professionals.7 Up to 37% of clinical time is spent on coordination activities, such as reading and actioning correspondence from other services, sending referrals and searching for information on care provided in other services that is not readily on hand, although this time is rarely written into clinical schedules.8 9 Concurrent multimorbidity and social/environmental exposures make this ‘coordination work’ more complicated and more time-consuming, but also more important: coordinated heart failure care for instance can result in enhanced quality of life, improved symptom control, fewer hospital admissions and lower all-cause mortality.7 8 10
So how should we use these findings to improve the experience of coordinated care for patients and professionals? First, the needs, preferences and values of patients with multimorbidity must be at the forefront for healthcare policymakers, commissioners, researchers and educators (see figure 1).5 11 For example, in the Netherlands, a new medical specialty encompassing training in hospital gerontology, nursing home care, primary care and psychogeriatrics applies specialist knowledge within a holistic perspective and adds value through supporting primary care physicians to unravel the complex healthcare needs of elderly patients in community settings.12 Placing greater emphasis on patient-oriented outcomes and preferences within guidelines and care pathways will further help to improve both the experience and the quality of care for patients with multimorbid disease.10 11
Second, we can work towards transforming specialist and generalist services into an integrated system that is coordinated and ideally built on shared goals and values, articulated and agreed roles and responsibilities, effective communication, and a willingness to cowork and co-learn.13 In Belgium, this process has involved measurement of the maturity of integrated and coordinated care at micro, meso and macro-levels, with identification of the relational, organisational, governance and financial support needed to support change as well as change management training programmes for healthcare teams.14 In one region of Southwest Germany, a health management company has worked with physicians’ networks, hospitals and health insurers to re-engineer care processes and integrate IT using a public health and preventative approach. Early evaluations show cost benefits and savings for the partners through bundled payment and gain-sharing models, and improved health outcomes for the population.15 Meanwhile, evidence from comparisons of digital transformation of coordinated care programmes across eight European countries has demonstrated the benefits of improving interoperability of data for real-time shared patient care and for population health management.16 In Western Kenya, the Academic Model Providing Access to Healthcare Partnership, in collaboration with the Kenya Ministry of Health, has established a multicomponent facility-based hypertension and diabetes management programme that includes task redistribution, clinical decision support using health IT, consistent and secure medication supply, linkage and retention activities, community stakeholder engagement and social support.17 In the spirit of ‘reciprocal innovation’, there are lessons from all over the world that can be applied to the challenge of coordinating care for patients with heart failure.18
A third option is to create conditions for bottom-up innovative initiatives such as local heart failure care pathways to develop, for instance, by allowing flexible regulation-free spaces in which new local approaches to coordination can be tested and evaluated. Most health systems are complex and adaptive, meaning that interaction, feedback loops and interdependence between the system elements exist and that processes can be emergent, generative and non-linear.19 As coordination depends on relationships and emergent contexts, local-level implementation plans for coordinated care pathways require local actors to engage in an unruly process of continuous problem-solving and adaptation.7 19 Materials, resources and lessons from evaluations of micro-level implementation can be shared through learning networks, offering an approach to alignment at the meso-level if macro-level barriers are difficult to overcome.20 In the short term, this will require investment in time, resources, data and interorganisational governance. In the longer term, these investments will optimise the learning capacity of the local system as a whole, mitigate against the risks of fragmented care and chaotic healthcare utilisation, improve quality of care and potentially health outcomes, and could actually reduce overall healthcare costs.20
Coordinated care for patients with HFpEF experiencing the complexity of multimorbidity and adverse social determinants of health is undeniably challenging. However, the findings from the accompanying paper and promising examples from different regions of the world help to illuminate a path forward to improve patient experience, quality of care and health outcomes. While elusive, a better system need not be illusive. Addressing the needs of all end-users—patients, carers and healthcare professionals —can be a new reality towards which we all work.
Patient consent for publication
We would like to thank Breeanna Sampson for assistance with the figure.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Commissioned; internally peer reviewed.