In an era of value-based care, the patient's voice is becoming increasingly important, according to speakers at the Patient Advocacy Summit of the National Comprehensive Cancer Network (NCCN) in Washington, D.C. Across oncology there is "a concerted effort to improve and define value," but as part of that effort "the voice of the patient is often misrepresented and misunderstood," said Robert W. Carlson, MD, CEO of the NCCN.
In announcing the summit, the NCCN stated: "The gap between the understanding of value-based care from a patient perspective as compared to physicians and the health system is one of the biggest barriers to patient-centered care." The summit focused on closing that gap in the perspective of value. Participants and attendees included health care providers, policy experts, cancer survivors and patient advocates, among others.
"We must always keep in mind that no two individuals will define value in exactly the same way," said panelist Ilana Feuchter, MA, Senior Manager for National Advocacy at the National Ovarian Cancer Coalition. "Therefore, patients must be included in any discussion of value at the beginning of their diagnosis and throughout each step of the process, as that definition may change following treatment or if there's a change in prognosis."
As part of the growing awareness of the importance of the patient's voice, the FDA strives to include patients' views, observations, and reactions in the process of drug development, said Paul G. Kluetz, MD, Deputy Director of the FDA's Oncology Center of Excellence (OCE). "Cancer drug development can incorporate patients all along the way," said Kluetz in a keynote address. Specifically, he said, what really matters to patients is how they will feel and function while taking their therapy, so those data should be collected. To that end, he added, "We can and should make clinical trials more patient-friendly."
Kluetz's work at the FDA has led to the initiation and direction of the OCE's patient-focused drug development program, which has been instrumental in leading FDA's efforts to review, analyze, and communicate clinical information from patient-reported outcomes. In 2012, the FDA established the patient-focused drug development initiative to more systematically obtain the patient voice on specific diseases and their treatment. Kluetz said he and his colleagues are currently developing Project Patient Voice, a web-based platform that will allow patients to post real-world evidence in order to improve the overall understanding of the patient experience.
Patient-experience data can support FDA staff, help identify areas of current need in the patient population, and inform clinical trial endpoint selection and the design of clinical trials. The OCE initiative focuses on actively engaging with patients and advocacy groups, fostering research into measuring the patient experience, and generating science-based recommendations for regulatory policy. Kluetz said the patient voice will complement existing survival and tumor information to provide additional evidence about the effects of cancer therapies on patients. He said the OCE has developed a core set of clinical outcomes important to patients, including disease symptoms; symptomatic adverse events; a global side effect summary; physical function; and the ability to work and perform activities, including leisure-time pursuits.
Value to patients means trust in their provider, stressed panelist Elizabeth Franklin, MSW, LGSW, ACSW, Executive Director of the Cancer Policy Institute at the Cancer Support Community, the largest U.S. provider of social and emotional support services for cancer patients and their loved ones. Speaking during a panel discussion on elements of patient-defined value, Franklin said that, to a patient, trust means being able to say, "Whatever my doctor tells me to do I'm going to do."
"Value sometimes gets lost in the process of managing the disease," said panelist Chuck Strand, CEO at Us TOO International Prostate Cancer Education and Support. He noted that issues around sexual health, erectile dysfunction, and intimacy are important to prostate cancer patients, and should be taken into consideration with treatment choices.
"Erectile dysfunction and urinary incontinence can be temporary or ongoing treatment side effects from surgery or radiation," he noted. "It's important to patients and their partners to address this with their health care team during the process of making a shared decision on a treatment pathway, and be prepared to address management of these issues, if necessary, while recognizing the difference between intimacy and sex."
Value doesn't get lost when the physician takes the time to really listen to the patient's voice. "I valued not being a number," said panelist and cancer survivor Lillian Kreppel, a patient advocate for the HPV and Anal Cancer Foundation. She described how important it was to her when her oncologist "answered every question; he took the time."
Taking the time is especially important to LGBT patients, stressed panelist Darryl Mitteldorf, LCSW, Executive Director of the National LGBT Cancer Project. He described how, because of homophobic societal attitudes, LGBT patients often fear that their providers will not understand their needs or will see them as difficult patients. They may say, "I don't want that doctor to get mad at me."
"LGBT people can have different configurations of what a family is, and our families are rarely considered by the health care system in the United States," Mitteldorf said. Because of their fear, "LGBT people present with higher incidence rates of anxiety than most groups." He noted that an LGBT-friendly office results in a more engaged patient.
Today, it is important to ask cancer patients directly what is important to them, emphasized panelist Andrea E. Ferris, MBA, President and CEO of LUNGevity, a leading lung cancer nonprofit. "It's important to generate real-world data directly from people affected by lung cancer," she noted, adding that it is possible to analyze such data and determine patient preferences.
Similarly, it is important to directly ask colorectal cancer patients before treatment what is important to them, said panelist Ronit Yarden, PhD, MHSA, Senior Director of Medical Affairs for the Colorectal Cancer Alliance. "One big issue for colorectal cancer patients regardless of age, but especially younger patients, is that physicians need to better address intimacy, fertility preservation, and overall sexuality," she said. "Treatments for colorectal cancer often come with debilitating side effects that can reduce a patient's quality of life. We not only want patients to survive, but we want them to thrive."
Several speakers emphasized the importance of screening for distress and also addressing the non-medical social and economic needs of cancer patients. Housing, transportation, and high costs of therapy are major concerns to patients, noted panelist Carla Tardif, CEO of Family Reach, whose mission is to prevent and reduce the financial burden of cancer for families.
As previously reported by Oncology Times, social determinants of health are increasingly recognized as having a key impact on treatment outcomes. According to data from Family Reach, up to 73 percent of adult patients may experience financial toxicity related to their care.
"We're at a point in health care where action is needed if not required," said Justin E. Bekelman, MD, Chief of the University of Pennsylvania Genitourinary Service in Radiation Oncology; Director of Penn's Center for Cancer Care Innovation at the Abramson Cancer Center; Director of Strategic Initiatives in Radiation Oncology at Penn Medicine; and Senior Fellow at the Penn Center for Precision Medicine and the Leonard Davis Institute for Health Economics.
In a keynote address, Bekelman said that, to bring patients the high-quality care they want, health providers today need to really listen to the patient, be responsible for all care and its cost, tie payment to patient experience, focus on social determinants as well as the medical aspects of care, create trust by treating all patients with dignity and respect, and get rid of unnecessary care.
Bekelman noted that he and his colleagues are working on integrating social determinants of health into a dashboard at the point of care. "It has huge promise, but it's really hard," he said. Despite the challenge of integrating the cancer patient's voice more fully into care, "We have to be team leaders who drive change," advised Bekelman. Investing in ways of making value-based care more patient-centric pays off, he added. "Payers will pay for value; I have no doubt about it," he said.
A number of speakers described programs designed to integrate the patient's voice and needs into cancer care. "We have implemented a financial toxicity tumor board" to discuss the unintended financial side effects of a patient's treatment, said panelist Edward Kim, MD, Chair of Solid Tumor Oncology and Investigational Therapeutics and the Donald S. Kim Distinguished Chair for Cancer Research at the Levine Cancer Institute, Atrium Health in Charlotte, N.C. Right now this pilot project is a learning tool, he added.
"We have incorporated the social determinants of health into Epic," said panelist Kimberly Bell, BSN, MBA, Executive Administrator of Cancer Services for the Cleveland Clinic Health System. She also described holding Cleveland Clinic patient consult "huddles" to address cancer patients' needs, and working with out-of-network providers to help patients avoid a large out-of-pocket insurance expense. In addition, Bell said she and her colleagues will help cancer patients receive care in a local hospital, which is more convenient for them, if it can be arranged.
It is just as important to talk to patients about the financial burden of their care as it is to talk about clinical side effects, emphasized Alan Balch, PhD, CEO of the National Patient Advocate Foundation, which offers financial navigation help to patients. Balch also emphasized the importance of social determinants of health to cancer patients, including housing, food insecurity, child care, work and transportation, which are especially critical issues for patients with low incomes.
Peggy Eastman is a contributing writer.