“It’s the disease of not listening that I am troubled with,” a quote attributed to King Henry IV, kicked off a spirited panel discussion on the importance of incorporating the patient’s voice during treatment. Experts addressed these challenges at the 2018 Association of Community Cancer Centers Annual Meeting & Cancer Center Business Summit on March 16, 2018, in Washington, DC.
Carrie Tompkins Stricker, PhD, MSN, RN, BSN, AOCN, Chief Clinical Officer, Carevive, moderated the panel. The panelists provided their perspectives on a collaborative research initiative using shared decision-making to align clinician and patient understanding of care goals.
Listening to Your Patient
Dr. Tompkins Stricker set the stage for the urgency of patient engagement by sharing Carevive findings, including that clinicians are unaware of up to 50% of cancer symptoms that patients with cancer can have; 60% of avoidable cancer-related hospitalizations are for symptom control; and approximately 54% of oncology treatments are self-administered orally, with nonadherence rates of approximately 40% to 50% over time.
As Ethan Basch, MD, MSc, Director, Cancer Outcomes Research Program, University of North Carolina at Chapel Hill, showed at last year’s annual meeting of the American Society of Clinical Oncology (ASCO), proactive symptom monitoring improves clinical outcomes, but more action is needed to implement changes, particularly earlier in the care continuum.
There are many ways to collect patient-reported information, across patients with and without computer experience. Routine use of patient-reported outcomes (PROs) in patient care provides value by alerting clinicians to symptoms, and by improving communications, symptom control, and quality of life.1
Dr. Basch discussed his study in which he and his colleagues evaluated the effect of symptom monitoring with PROs on clinical outcomes.2 Patients who received standard care and self-reported PROs were 7% less likely to visit the emergency department and had a 5.2-month longer median survival than patients who received standard care but did not share PROs.2The 5-year absolute survival benefit was 8% in patients who self-reported PROs.2
PROs are defined by the FDA as outcomes reported directly by a patient or caregiver without filtering by a healthcare professional or anyone else. According to Dr Basch, “PROs are the gold standards for collecting information best known by patients: symptoms, functioning, quality of life, and patient-reported experiences and satisfaction.”
Patients have shown great support for PRO data collection systems. According to another study shared by Dr Basch, 98% of patients found the system easy to use and would recommend the system to other patients; 96% would like to continue using the PRO system; 94% reported that the PRO system was useful, and made it easier to remember symptoms at their clinic visits; and 90% reported that the PRO system improved their discussions with their physician or nurse.
Clinicians also showed high support for PRO systems, according to Dr. Basch. Among physicians and nurses, 95% reported that PROs are useful during treatment for adverse event monitoring, and all responded at a 90% rate that they discuss PRO reports with patients, that PROs are a potential source of research-grade data, and that PROs accurately reflect patient clinical status.
Dr. Basch summarized the study findings as follows:
- PROs can provide valuable information to guide clinical care, inform research, and improve quality and clinical and financial outcomes
- There are well-established methods for collecting PROs to engage patients in research and in cancer care delivery
- Implementation science efforts and technology tools are greatly needed to optimize translation of PROs into clinical care
- The potential for using PROs to expand our understanding of real-world patient experiences and outcomes offers a yet-untapped potential.
The Value of the Patient’s Voice
Brad Bott, MBA, CCRP, Director, Oncology Clinical Program, Intermountain Healthcare, introduced a discussion about the importance of the patient voice in treatment decisions.
“How can we demonstrate value if we don’t ask questions to our patients in terms of what their expectations are for their care, and what they consider value themselves?” he asked. “We all have an obligation and need to be sensitive to provider burnout.”
According to Mr. Bott, oncologists have a lot of information to digest and articulate to their patients, and shared decision-making promises to help support and measure these clinical activities.
Shared decision-making is when “the physician and the patient make health-related decisions collaboratively, based on both the best available evidence and the patient’s values, beliefs, and preferences.”3 The promise of shared decision-making is that patients and their physicians can exchange information, weigh risks and benefits, and arrive at a therapeutic choice together, aligning care with goals, wishes, and values.
Mr Bott noted that for “patients with advanced disease, they can have some tradeoffs when they start their treatment. Some of those tradeoffs can result in some very serious toxicities.”
Intermountain’s Shared Decision-Making Initiative
Intermountain Healthcare is participating in the IDEA study that, according to Mr. Bott, will pose a question for patients with metastatic colorectal cancer (CRC): “For a 1% greater chance of being alive without cancer in 3 years, would you be willing to incur triple the risk of severe nerve damage?”
Intermountain Healthcare is collaborating with Genentech, Carevive, and Utah Cancer Specialists on a shared decision-making project to improve the experiences and outcomes of patients with metastatic CRC. This project evolved after Dr. Basch presented his study results at ASCO last year, leading to the exploration of how to invest in the collaboration and decision-making process—where the work with PROs had already begun.
Mr. Bott made a pointed comment about Utah Cancer Specialists being a private oncology practice, stating that for hospital systems such as Intermountain Healthcare to be successful in initiatives, it is very important to involve their affiliated physician groups.
This new shared decision-making project recognizes that patients with advanced cancer often feel a loss of control; therefore, the project explores whether shared decision-making can:
- Improve the patient’s sense of control and engagement
- Enhance patient and provider satisfaction
- Improve alignment with evidence-based treatment decisions and patient satisfaction with those decisions
- Produce the clinical and financial outcomes that have been seen with PROs.
The IDEA Study
The IDEA clinical trial will enroll 50 patients with metastatic CRC and their providers, as well as a control group of 50 patients with metastatic CRC. The shared decision-making intervention will include a tablet computer for patients to provide their encounter information on, and will use 4 metrics from the ASCO Quality Oncology Practice Initiative (ie, Core 9, Core 10, Core 11, and Core 13a1a) to define quality and success.
To the project participants, this is a crucial first step in building a body of translational science that drives toward more personal decisions in their care for patients.
Nancy Lutz Paynter, MBA, CHCP, Director of Learning & Clinical Integration of Medical Affairs at Genentech, provided perspective from the life sciences community about the importance of entering into partnerships with care settings where patients are actually receiving treatment.
She noted that the ability to walk away from this project with the true “understanding that it takes a village, and that the spirit of collaboration is alive and well beyond this project” is to her a mark of success for this initiative. Genentech has also worked with Dartmouth College to better understand the patient experience.
The collaboration between Intermountain Healthcare, Utah Cancer Specialists, Carevive, and Genentech is already being replicated at cancer centers across the country, to better understand how providers and patients can come together for improved shared decision-making.
Improving Care Quality
“If we can really tease out and effectively engage the clinical team and the patients in a new way to make that up-front decision, drive the science of engagement at the front end, we really do believe that we will achieve a better understanding, not only of what drives that initial decision,” Ms. Paynter said. “Then ultimately over time, we’ll have a mechanism to really capture data, starting with the purposeful PROs that already exist, and create a dynamic mechanism of tethering the physician and the patient, the nurse and the patient, over time in a care journey that becomes modified by how the care is playing out for the patient,” Ms Paynter added.
Perhaps equally important are patients’ perspectives of what they need and what are important changes during their cancer care, and how these affect the shared decision-making. The ultimate goal of the project is to collect insights to accelerate patient-centricity where care is delivered and where the patients are.
The partners in the project have already learned much about the potential for standardization of the early patient-physician encounters and communication in just 12 months. At the outset, the partners agreed that they did not know enough about the needs and engagement of their patients, and have found enormous value in their commitment across the board to put their own agendas aside and move forward putting the patient’s needs first to improve outcomes.
The panelists encouraged the audience to follow the work that has begun through this initiative and others to strengthen patient care and care quality by paying attention to PROs and shared decision-making in their own institutions.