The delivery of cancer services has become increasingly complex as we move to more personalized diagnostic and treatment approaches and cancer is recognized as a chronic disease. Cancer patients today typically come into contact with multiple health services over long periods. Healthcare reforms in many countries also mean that the various services involved in cancer care are funded by a confusing mix of personal, private insurer, and government sources. It is not surprising then that many patients today tell us their cancer experience is disjointed. Importantly, this lack of coordination of cancer care results in poor outcomes that can range from minor inconvenience at best to potentially life-threatening safety incidents at worst.
In recent years, many health policy makers have called for improved care coordination. For example, the Institute of Medicine in the United States identifies care coordination as an important strategy that has the potential to improve the effectiveness, safety, and efficiency of the healthcare system.1 Cancer service providers and researchers have responded to this call with a range of initiatives that are described in the published and gray literature, which seek to improve the coordination of cancer care. These initiatives are at patient level (eg, referral pathways, patient empowerment strategies), health professional level (eg, patient navigators, care coordinators), health service level (documented care pathways, multidisciplinary team meetings), and funder/system level (eg, policy and funding mechanisms).2
Each of these care coordination interventions has certain logic about them. It makes sense that implementing improved communications or having a dedicated person to facilitate transitions between service providers will improve patient experiences. Despite such interventions being common sense, the evidence to support them varies considerably. One Cochrane review of 51 studies evaluating interventions to improve continuity of care for cancer patients (ie, patient-held records, telephone follow-up, communication and case discussion, change in medical record system, care protocols, directives and guidelines, and coordination of assessments and treatment) reported no clear evidence that the interventions either improved or worsened patient health-related outcomes.3 There is also considerable debate about the value for money associated with some coordination strategies, which can be quite costly. As a result, some health service funders and providers highlight the need for review of existing investments directed at achieving coordinated care. For example, there is significant debate in Australia about whether dedicated care coordinator roles are cost-effective, despite strong calls from consumers and many health professionals that such positions are critical to safe and quality care in today’s complex health system.
In the absence of strong evidence from randomized controlled trials, how do we ensure evidence-based health policy that results in improved coordination of cancer care? First, care coordination is an example of a complex intervention that is unlikely to be understood if we consider various coordination strategies in isolation. Multiple interventions at multiple levels (system, healthcare provider, patient) are likely to be required to address the range of factors that can lead to uncoordinated care. Second, rigorous health service research is required using research designs that may be more appropriate to the complex nature of care coordination interventions, as recommended by the UK Medical Research Council guidance on evaluating complex interventions.4 Moreover, in designing such research, careful attention needs to be given to selecting the appropriate outcome(s) for the intervention. That is, if the intervention is designed to improve coordination of services, appropriate primary outcomes are more likely to be health service usage and care experience outcomes, rather than more secondary, albeit important, outcomes such as improved quality of life or reduced morbidity or mortality. Alongside this, rigorous economic appraisals are required to guide decision makers at all levels. Third, one of the key lessons for health service researchers is that the failure to identify significant benefits of care coordination interventions may not necessarily be because the intervention is ineffective. Rather the lack of significant findings for much research in this field more likely reflects a failure of implementation. Care coordination interventions are by nature complex and need to be tailored to individual needs. This often results in variation in intervention delivery, the result being variation in the impact of the intervention. When designing care coordination interventions, considerable attention needs to be given to their implementation.
Well-designed, targeted care coordination that is delivered systematically and rigorously is needed to improve outcomes for cancer patients, care providers, and payers. We need to avoid oversimplifying these complex interventions and pay more attention to reducing variation in how they are implemented.
1. Adams K, Corrigan M. Priority Areas for National Action: Transforming Health Care Quality. Washington, DC: National Academies Press; 2003.
2. Aubin M, Giguère A, Martin M, et al. Interventions to improve continuity of care in the follow-up of patients with cancer. Cochrane Database Syst Rev. 2012;(7):Art. no.:CD007672.
3. Evans A. Care coordination workshop report. Cancer Forum. 2008; 32 (1): 49–54.
4. Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M. Developing and Evaluating Complex Interventions: New Guidance. London, UK: Medical Research Council; 2009.