The cost of cancer care is one of the fastest growing components of healthcare spending in the United States, with expenditures expected to increase from $125 billion in 2010 to an estimated $158 billion in 2020.1 With recognition that there is varying and often suboptimal use of costly cancer care services, several groups have called for interventions to enhance the value of cancer care by improving outcomes while maintaining or reducing costs faced by patients, payers, and society.2-5 Efforts to improve value will entail establishing metrics that capture value, implementing programs to improve value, and tracking trends over time. However, agreeing on the denition of “value” in cancer care, and how it should be measured, is a potentially contentious process. With these issues in mind, we describe a multistakeholder, data-driven, research-enabled regional network that is focused on dening, measuring, and improving value in cancer care for patients, their families, and society. We believe that our “bottom-up” regional strategy may provide a model for developing, implementing, and evaluating promising interventions aimed at improving cancer care.
THE VALUE IN CANCER CARE INITIATIVE
In 2013, the Fred Hutchinson Cancer Research Center’s Hutchinson Institute for Cancer Outcomes Research (HICOR) established a regional consortium consisting of cancer care providers, payers, patient advocates, and researchers committed to improving outcomes and reducing costs of cancer care: the Value in Cancer Care Initiative. The rationale for the multistakeholder process is grounded in theory and experience that a change in practice is best achieved by direct participation by those who are impacted and who have both control of, and a stake in, the process.6-10 A steering committee with representatives from the stakeholder groups organized a regionwide meeting to introduce the concept of improving value in cancer care. The meeting, held in January 2014, included nearly 70 individuals representing 20 organizations from across the region.11 The meeting organizers tasked this group with identifying 3 to 5 metrics capable of measuring “value” from their perspective. Rather than focus on a single definition of value,12 the organizers asked stakeholders to consider their own denition of value, with the caveat that a value metric must minimally consider costs and clinical outcomes from their perspective as patients, payers, or providers. Additionally, attendees were informed that the value metrics should be both meaningful from their perspective—ie, represent issues that improve either the efficiency of care, or the lives of cancer patients, or both—as well as actionable, meaning amenable to intervention within the healthcare system. Importantly, the organizers stressed that it should be feasible to generate the metrics without undue burden on any 1 stakeholder group. It would be the task of HICOR to create the final metrics and report back on them at the next summit.
During the conference, multistakeholder “working groups” independently created lists of possible value measures across 3 phases of cancer care: treatment, survivorship, and end of life. Although approximately 750 metrics within 9 domains were initially offered by the working groups, a final prioritization exercise involving the full group identied 6 domains as standouts on the 2 dimensions of meaningfulness and actionability ().
LESSONS LEARNED: KEY ELEMENTS OF THE STAKEHOLDER ENGAGEMENT MODEL FOR GENERATING VALUE METRICS
The aspirational goal of improving outcomes in cancer care while reducing costs confronts the reality that while diverse stakeholder groups must work together to achieve this goal, they may have competing or even diametrically opposed interests and goals. A health insurer’s cost can be a clinician’s revenue; patients may distrust the actions of insurers and even physicians to restrict “unnecessary” care if they feel it threatens their options or potential well-being. Therefore, the necessary task of trying to achieve concordance on which metrics are worthy of attention and support is often delegated “top- down” from a single stakeholder group, creating antagonism early in the process and ultimately reducing the likelihood of achieving constructive change. We have outlined several aspects of our process, listed below, that we believe are replicable in other regions and that may increase the likelihood of implementation and ultimately positive change. The latter goal remains to be proved.
1. Bottom-up multistakeholder engagement in all phases of the process:
• Defining relevant clinical questions
• Selecting specic metrics
• Defining measurement algorithms
• Selecting potential interventions to improve care where the value is low
2. Emphasis on actionable and meaningful metrics. Actionable measures create near-term opportunities to improve outcomes and lower costs. Meaningful metrics provide all stakeholder groups with the opportunity to support them from the perspective of their own organization. The most meaningful metrics are self-apparent (eg, survival) and thus require less translation when tools have been developed to capture them, summarize the results, and disseminate the findings. Other metrics require translation, which should be done from the patient’s perspective. For example, “chemotherapy at the end of life” might be better referred to as “overtreatment,” to convey the notion that the treatment does not improve quantity or quality of life.
3. Willingness to accept some metrics that might not be personal priorities or may be difficult to define and implement. Stakeholders were reminded that no single metric can be everyone’s top priority. From a research perspective, some domains from the will be difficult to define in the short term but can be refined over time as other measures are reported.
4. Manageable number of metrics. Performance measurement is burdensome to systems that must collect the data, especially if measures are not aligned with data that are routinely collected or that interfere with work flows. Large numbers of performance measures can quickly overload systems and may reduce participation and the likelihood of meaningful change related to anyone. This can be discouraging and reduce cooperation with future performance measurement efforts.
5. Third-party facilitation. HICOR positions itself as a neutral third party that serves all stakeholder groups; thus, the fact that the organization is affiliated with a cancer care delivery system could be seen as problematic by competitors and health insurers. We address this issue with transparency of our methods. There is probably no solution that is completely free of all bias and conflicts of interest.
The metric development process within HICOR’s Value in Cancer Care Initiative is the first step in a larger vision of designing, implementing, and evaluating approaches to improve cancer care. Like the process of identifying the metrics themselves, we believe the interventions aimed at improving performance should be developed through the multistakeholder engagement process, supported by experts in cancer care delivery, and conducted as prospective, controlled studies. We describe these elements and our plans below.
Creating Value Metrics
Using commercial and public health insurance enrollment and claims records linked to the region’s Surveillance, Epidemiology, and End-Results cancer registry, HICOR is quantifying metrics in 4 of the 6 domains shown in the . The active participation of the health insurance community has facilitated timely transfer of insurance records, making the available metrics as close to “real time” as possible. Based on input from the clinical community, metrics are available at the clinic level (vs the provider level). Metric development is an iterative scientic approach that requires the engagement and expertise of clinical, statistical, and scientic programming professionals. The process of creating and reporting metrics requires careful thought, since difficulties with numeracy have been shown to be a barrier to understanding data for laypersons and even professionals.13-18 A regional, stakeholder-based approach allows the opportunity for individual participation and feedback to the approach as it unfolds, and for one-on-one interaction and modication when necessary to improve the face validity of the metrics.
Reporting the Results
Initially, HICOR is reporting the methods and results privately to the clinics, to ensure that data quality and accuracy issues can be resolved before public reporting of clinic-level records. However, HICOR is dedicated to publicly reporting clinic-specific performance metrics and to providing consumer and patient-facing tools to support decision making such as providing estimates of out-of-pocket costs for treatments with equivalent outcomes. Optimal display of the information is critical to the overall process. Displaying complex data to a diverse audience has necessitated the engagement of experts in data visualization and user-centered design. For example, providers may wish to monitor their adherence to performance metrics regularly so that clinics can evaluate their progress toward pre-specied goals. Patients, on the other hand, may use performance measurement as a way of selecting providers, or as an opportunity for patient-provider interaction regarding particular aspects of care (eg, tumor marker testing following treatment of local-stage breast cancer). To address these issues, HICOR is developing a Web-enabled tool to display reports generated from the linked database noted above. This tool, aimed at providing regional partners with updated reporting on trends in oncology, is now in the beta testing phase with partners. The ultimate goal: to provide results on an interactive website accessible to patients, providers, health insurers, and the purchaser community.
Using the Metric Infrastructure as a Platform for Research-Driven Approaches to Improve Care and Reduce Costs
Performance measurement can be used for Continuous Quality Improvement (CQI) programs, with an emphasis on observational methods and pre- and post evaluations. Our model of stakeholder engagement and regularly updated data linkage provides an opportunity for more formal research designs such as prospective, controlled trials and evaluation of interventions designed to improve quality and reduce costs. When feasible, our goal is to conduct randomized controlled experiments, implemented in the practice setting, and monitored using existing data systems that are already part of standard work flows (eg, insurance claims and electronic medical records)—previously referred to as pragmatic trials.19 We believe participation of regional stakeholder groups in the design of the intervention and actual conduct of the trial is key to this process. Input from clinical oncology researchers and experts in trial design will support the development of interventions that can be tested in randomized trials and formally evaluated.
Robustness of the Model to a Wide Variety of Interventions
Many different interventions may be effective in improving oncology care where value or performance fails to meet expected targets. Examples range from novel payment models (eg, pay-for-performance methods) to delivery system changes (eg, automated order entry systems) to tools for patient or provider behavior change (eg, interactive videos, shared decision-making tools). Our network provides us with the opportunity to test and monitor the impact of a wide range of interventions in clinical practice settings, and then to scale up those interventions that appear promising for formal testing via controlled studies. Interventions that do not show improvement can be quickly shelved. Such rapid evaluation and redirection of effort can be difficult and cumbersome in the traditional CQI model.
THE POTENTIAL IMPACT OF OUR APPROACH
The Value in Cancer Care Consortium is the rst step toward linking national quality and value efforts with real-world clinical practice and patient experience in a local region. We can rapidly develop and evaluate practical, applied models for translating policy to practice in a grassroots or real-world setting. While healthcare policies are often developed nationally, the implementation of those policies and their impact on patients, providers, and payers is most evident at the local or regional level, potentially allowing more rapid adaptation or intervention. Our strategy provides a real-world laboratory for developing and accessing promising interventions to improve care. Those that are successful can then be scaled and evaluated elsewhere, such as within integrated regional delivery systems, in clinical trial research networks, or through federal programs such as CMS/Center for Medicare and Medicaid Innovation programs.
The cost of cancer care continues to increase at an unsustainable rate, and the quality of cancer care delivery has been found to vary considerably. The need for efforts to improve the value of cancer care by improving outcomes while controlling or reducing costs has never been more apparent. In partnership with multiple committed stakeholders—patient groups, health plans, and providers—HICOR is generating consensus-based, clinically relevant, and actionable performance measures. These measures can be employed to:
• Design and evaluate practice changes in healthcare delivery
• Monitor the impact of the changes at the clinic, provider, and patient levels
• Develop new interventions, including performance improvement programs, as well as actual experiments, rapidly and efficiently
This multistakeholder regional partnership is providing a real-world platform for the development and evaluation of promising interventions to improve the quality and value of cancer care in the 21st century, both regionally and nationally.
Scott D. Ramsey, MD, PhD, is director, Hutchison Institute for Cancer Outcomes Research, Division of Public Health Sciences, Fred Hutchinson Cancer Research Center, Seattle, WA; professor, Department of Medicine, University of Washington, Seattle, WA.
Gary H. Lyman, MD, MPH, is co-director, Hutchison Institute for Cancer Outcomes Research, Division of Public Health Sciences, Fred Hutchinson Cancer Research Center, Seattle, WA; professor, Department of Medicine, University of Washington, Seattle, WA.
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