The last decade has brought increased promotion of patient-centered cancer care. In response to the growing number of cancer survivors, the Institute of Medicine (IOM), American Society of Clinical Oncology (ASCO), and other leading organizations have endorsed the provision of treatment summaries and survivorship care plans (SCPs) at the end of cancer treatment.1-4 More recently, the IOM's National Cancer Policy Forum has emphasized the importance of implementing treatment plans (TPs) from the time of diagnosis through the end of active treatment.5 Both TPs and SCPs are charged with multiple missions: to foster coordinated, patient-centered, quality care across the cancer treatment continuum while promoting patients' health self-management and parsimonious use of services in a future that includes a projected shortage of oncologists.6 However, care planning has yet to be broadly adopted because of various barriers, with the most frequently cited reason being the burden on oncology clinicians.7
Concurrently, because of the 1999 IOM report concluding that many patients with cancer were not receiving the standard of care, there has been an increased emphasis on quality monitoring.8 There have been growing efforts focused on the development of quality measures along with programs for physician reporting of adherence to specific quality measures in their practice (eg, Centers for Medicare and Medicaid Services Physician Quality Reporting System).9 Financial incentives are often associated with these programs, and their goal is to improve the quality of care received by patients. To avoid the administrative burden of reporting on individual patients within a practice, some reporting programs allow prospective participation in registries from which quality measures can be derived.
To this end, ASCO conducted a pilot study to evaluate the feasibility of a breast cancer registry (BCR) that could serve multiple purposes, including quality reporting as well as the development of TPs and SCPs. The initial results from the BCR pilot study have been reported in Cancer.10, 11 The article by Partridge et al presented the operationalization of data collection within 20 oncology practices that volunteered to participate in the BCR pilot study and discussed the challenges of implementation within the workflow of a busy clinical setting.10 The BCR pilot study capitalized on existing breast cancer TP and treatment summary templates that were developed by ASCO and adapted for electronic data capture. Fortuitously, these data could also be shared directly with patients: first as part of treatment planning at the initiation of therapy and later as part of a posttreatment SCP effort at the end of treatment. Although the main focus of the BCR was to evaluate the quality of care, Blinder et al, in a companion article, reported on the opportunistic capture of data from patients who received these TPs and summaries as a byproduct of the registry effort.11
The ASCO BCR pilot program demonstrates various ways in which TPs and SCPs can be implemented so as to maximize their usefulness to patients and clinicians. Involving more than 2000 patients, the program was able to prospectively collect data used both for quality assessment purposes and to create individualized TPs and SCPs in a way that was feasible and acceptable to both clinicians and patients. Blinder et al found that a majority of patients with breast cancer believed that the TPs and SCPs were useful communication aids that also bolstered their personal peace of mind.11 Partridge et al found that a majority of clinical practices viewed the BCR positively, favoring it as a source of quality improvement data, and believed the TPs and SCPs improved communication with patients.10 However, greater than one-half of the participating physicians and staff reported additional practice costs associated with the BCR pilot project, primarily because of personnel overtime.
The BCR program took steps to justify the time involved in collecting patient registry data by structuring these data so they could be used to 1) create TPs for patients at the time of the initiation of adjuvant treatment, 2) create SCPs for patients at the completion of adjuvant treatment, 3) generate quality metrics that can be used by oncology practices in quality improvement initiatives, and 4) facilitate research. In addition, by presenting patients with TPs before they began adjuvant therapy and then SCPs as they finished, the BCR pilot study used registry data to generate documents that served as communication and decision-making tools and that evolved as patients transitioned through the cancer care continuum. On a practical level, the time spent completing a patient-friendly TP can pay dividends when the time comes to later prepare a SCP that draws on some of that same information. The ASCO BCR pilot program further maximized the usefulness of the time spent completing these documents by aligning them with the type of quality assessment and improvement efforts that are becoming standard practice.
In truth, the often-cited burden of completing TPs and SCPs highlights common deficiencies in medical documentation and adherence to quality care standards, both of which should be continually monitored and improved for a variety of reasons. Two ASCO initiatives at the forefront of efforts to standardize quality measurement and monitoring in cancer care, the National Initiative on Cancer Care Quality and the Quality Oncology Practice Initiative, have found that quality of care does not meet the standard of high reliability and it appears to vary widely across locations.12 Although a fruitful first step toward creating a national quality monitoring system for cancer care, the National Initiative on Cancer Care Quality encountered various challenges with data infrastructure that also affect individual practices engaged in quality measurement, TP, and SCP initiatives.13 Foremost among these limitations are data entry and other personnel costs.
Clearly there is room to make both TP/SCP and quality improvement initiatives more efficient by first integrating them with one another and then using health information technology and patient registries to streamline them. Assimilating TP/SCP initiatives in this manner allows for quality improvement at critical points of cancer care, which has the potential to benefit both oncology clinicians and patients. To do this in a comprehensive manner, we need to inventory current quality metrics, registry requirements, and TP/SCP components to find commonalities and to develop a blueprint for how they can best inform one another. These common clinical variables and practice guidelines should reside in electronic medical records in such a way that 1) they encourage and remind clinicians to consider practice and documentation standards at points of care and 2) they can be queried easily when completing electronic cancer registries, performance assessments in electronic quality monitoring systems, and automated TP and SCP templates. The investment necessary to develop that type of electronic infrastructure has great promise to ultimately save substantial resources in overtaxed oncology settings.
Another way to effect greater change in quality, patient-centered care is to align TP/SCP and performance improvement initiatives when advocating for reforms to health care policy and practice standards. For example, the Commission on Cancer of the American College of Surgeons developed new standards that require Commission on Cancer-accredited facilities to participate in ongoing monitoring and improvement of care, use a cancer registry with lifelong follow-up, and provide patients with evidence-based TPs and SCPs.14 Providers may be further induced to incorporate TPs and SCPs into standard care if financial incentives are available for doing so, similar to pay-for-reporting programs. Along those lines, the National Coalition for Cancer Survivorship is planning to reintroduce the Comprehensive Cancer Care Improvement Act, which is a bill that would require the Centers for Medicare and Medicaid Services to reimburse cancer care planning services.
Quality monitoring and cancer care planning share some of the same system challenges and costs. However, they also have similar potential to promote patient-centered, effective, timely, and equitable care while minimizing inefficiencies in the medical system. Empirical investigations of TP/SCP programs are in their infancy and to date have focused on their feasibility, acceptability, and short-term efficacy.15, 16 The ASCO BCR pilot program presented in the articles that accompany this editorial demonstrates how registry data can be collected prospectively in a feasible manner that serves both quality assessment purposes and the creation of TPs and SCPs. This type of health care data infrastructure is well poised to facilitate future research, which should include longitudinal studies of how patient-centered quality improvement and TS/SCP programs may result in better coordinated care and reduced health care costs over the long term (eg, by reducing readmissions, unnecessary or duplicative services, missed appointments, treatment nonadherence and its associated detrimental outcomes).17, 18 Only then will we know whether the benefits of incorporating care planning and quality improvement into standard cancer care outweigh the associated costs.