Patient-centered care, shared decision-making, and the patient-centered medical home (PCMH) collectively describe a powerful concept that underlies much of the current thinking on health care reform. Although what has caught the political attention is health care insurance reform, the success of health care reform depends on linking payment reform with health care delivery reform. Let there be no confusion about this, when the decisions have been made about health care insurance and payment reform, it will still be up to us to figure out how to best deliver health care that respects and honors patients.
These terms no doubt mean different things to different people. For most people outside of oncology, the PCMH model refers to a primary care–based team that holistically coordinates and prioritizes patient care through identification of patient preferences and the engagement of patients and families in a shared decision-making process that places those preferences in the context of actual medical choices. The medical neighborhood is an extension of this concept to place emphasis on the need for medical sub-specialists to connect with primary care so that care coordination is optimized and lines of responsibility are established lest patients fall through the cracks or physicians end up working at cross purposes.
Exploring the relationship between primary and specialty care has recently become the focus of a project called CaRe-Align*, which is jointly funded by the private John A. Hartford Foundation and the federally funded Patient Centered Outcomes Research Institute (PCORI). CaRe-Align hosted its project launch in Dallas in April by bringing together patients, physicians, and health care researchers. ASCO, the American College of Physicians, and other professional societies were represented.
Specialists, by nature, focus on the patient health issues that relate to their expertise area. However, this narrow focus can become a blinder encouraging medical decision-making in silos. While medically appropriate in the setting of otherwise normal health, these decisions may be inappropriate care in the total context of a given patient’s health status. This isolation of a patient’s problems into silos is a failure to deliver patient centric–care, which would otherwise mandate that all of a patient’s health problems be considered together. The CaRe-Align project will study how to improve communication between primary care and specialty care in order to honor elicited and documented patient preferences and goals.
How do these concepts apply to patients with cancer? Is there a role for a specialty-based PCMH? Once a cancer diagnosis is made, for a time at least, subsequent health care delivery is dominated by this one single medical problem. The multidisciplinary nature of cancer care also argues for the need for an oncology medical home where the medical oncologist assumes responsibility for coordination of care among the cancer specialists and cancer team. However, an oncology patient–centered medical home (OPCMH) may not provide adequate consideration of a patient’s overall situation if specialists who are pursuing a single problem drive care delivery.
I suggest that the OPCMH model must consider how it relates to the broader PCMH model. Perhaps the answer is dependent upon where the patient is along his or her cancer journey. At time of diagnosis, evaluation, and acute care, the oncology practice may assume all the roles envisioned in a patient-centered medical home. At a later date when the patient enters post-treatment survivorship, or when palliative care becomes the primary focus, there will be a time to transfer the patient back to the primary-care medical home. Clear delineation of responsibility for ongoing aspects of care can be greatly facilitated by digitally exchangeable Clinical Oncology Treatment Plans and Summary documents. This aspect deserves further study by CaRe-Align and other similar projects so that medical teams recognize when a transition point is imminent and a smooth hand-off in care is facilitated.
As part of health care payment reform dialogue, the OPCMH has been advanced as a model through which cost containment can be achieved. If that discussion is limited to determining which chemotherapy pathway therapy option is most cost effective or achieving the avoidance of emergency department visits, there is risk that the core values of the PCMH will not be honored. The goals of effective communication and education between providers and patients, articulation of patient preferences and goals of therapy, coordination of multidisciplinary cancer care, and shared decision-making should be identified and preserved within the context of cancer care. Otherwise, while the OCPMH will become the best model to ask what is the best way to deliver chemotherapy, it will not be the best model to ask whether aggressive cancer treatment is the best answer in the context of patient expectations and values.
ASCO has begun to raise consciousness in two areas that directly relate to promoting discussions on patient preferences: value-based care and palliative care. Our efforts to promote shared decision-making with cancer patients emphasize the importance of working with our patients to educate them on the likely outcomes of medical interventions, attendant risks for harm, financial cost, and alternative approaches. ASCO’s developing Value-Based Framework is designed to foster these conversations rather than to dictate specific treatments. Our Palliative Care Virtual Learning Collaborative is designed to facilitate shared learning by ASCO member practices so they can implement these principles into practice and collaborate on developing models using widely accepted quality-improvement methodology. A medical home is a trusted and supportive place where difficult discussions and patient-centered care occur. And as the Robert Frost poem alludes to, a home is something that every one of us deserves.
*For more information on CaRe-Align, please contact Jessica Esterson at firstname.lastname@example.org.