Clinical pathway development needs to better take into account the patient perspective of cancer care, according to Alan Balch, PhD, in a presentation at the Clinical Pathways Congress (September 8-10, 2017; Washington, DC).
Representing the Patient Advocate Foundation as the chief executive officer, Dr Balch gave a presentation to clinical pathway developers and stakeholders regarding the inclusion of patient preferences into pathway decision-making. The objectives of his lecture were to relay the importance of designing decision support tools that can identify appropriate variations in care, as well as explaining how clinical pathways can support shared decision-making and clinical judgment.
Dr Balch began with sharing his belief that personalized care is the future of oncology care. A personalized approach, he shared, is more consistent with multiple factors emerging in oncology care, such as precision medicine, cost shifting to the patient, payment models shifting from volume to value, and IT interfaces and mobile technology. Disease and illness are very personal and vulnerable experiences for the patients, Dr Balch explained, and personalization helps identify appropriate variation in care based on the unique characteristics of the individual patient. A personalized approach should result in better outcomes at a lower cost, because “it allows the right treatment to be applied to the right patient at the right time.”
In a survey deployed to a sample that was representative of the total served population (n = 1349), Dr Balch found that most patients consider personalized care to be extremely important (83%) and that 96% of patients would choose personalized care over standard care.
Continuing his discussion of patient-centered care, Dr Balch explained that cost is simply one component of how individual patients determine quality of care. What matters most will vary from patient to patient and will change over time. Understanding the patient’s concept of quality as it relates to cost, benefits, and risks of care requires both hearing the individual patient voice in patient/provider interactions and the collective voice through data collection and analysis.
Dr Balch stressed that all patients are capable of making shared decisions about their care—regardless of their health, social status, or health literacy—and they all expect and deserve respect.
The discussion then shifted to decision support tools. Dr Balch explained that decision aids are useful for when there is more than one suitable option for care, when no option has a clear advantage, and when each option has benefits, harms, and costs that patients may value differently. The care team must identify and apply patient goals, needs, and preferences to align with choices about treatment options personalized to benefits, risk, and costs. Adjustments must be made for certain variable that may impact appropriate treatment selection as well (ie, race/ethnicity, transportation, genetics, financial toxicity).
Once decision support tools have been considered, the development of a goal-concordant care plan is needed that includes identification of social support and care navigation needs.
A truly person-centered decision support tool involves the individual patient’s health and quality of life; a focus on what matters to the patients; engaging the patient to help arrive at a care regimen that reflects the balance that is right for them between benefit, risk, and cost; and measuring outcomes that matter to the patient, as well as involving the patient in selecting and reporting those outcomes.
Dr Balch concluded this part of the discussion with how person-centered care and decision support tools can be implemented in clinical pathways. In his words, properly designed and implemented pathways should support clinical evidence-based judgment, help customize treatment and care protocols to the unique characteristics of the patient, reduce costs and variability in care, and navigate patients through various health care decisions (ie clinical trials). It is essential for patients to be reassured that pathways are not simply a “hidden tool” to steer them to a limited range of treatment options pre-selected by an external stakeholder based on cost savings, he said.
Additionally, Dr Balch recommended that pathways should be assessed for their ability to improve quality of care, be based on efficacy and safety while also incorporating relevant personalized drivers, allow for variance in the clinical and biological characteristics of individual disease processes, use total cost of care only as the final factor in defining initial on-pathway selection, and enable patients—with their providers—to consider additional cost information as a secondary step in the process.—Zachary Bessette