The success of oncology support services developed by pharmaceutical manufacturers depends on tailoring programs that meet the needs of their specific patient populations, said panelists at a roundtable discussion on patient centricity and connectivity in oncology support and HUB services.
“The burden is on the manufacturer to connect the dots” in addressing patients’ needs, whether they be financial concerns or unfamiliarity with technology, said panel moderator Charles Stevens, JD, MBA, Chief Operating Officer, CoPilot Provider Support Services, Shrewsbury, MA, at the 11th Annual Association for Value-Based Cancer Care in 2021.
A 2019 Accenture survey of 4000 patients found that 76% believe that pharmaceutical companies have a responsibility to provide support services, and that 88% of patients access content online via the company’s website, said Mr Stevens.
Oncology solution centers help with identifying and understanding product coverage, prior authorization assistance, reimbursement and coding, denial and appeal support, and copay and financial support.
“In talking to a major pharmaceutical manufacturer, who just couldn’t understand why, with all the online support functions they had, there were over 250,000 calls coming into their 1-800 number, most complaining about not being able to access something,” said Mr Stevens. “So, just because it’s out there, doesn’t mean that it’s built correctly.”
Developing support programs does not ensure that patients will have adequate access. Less than 1 in 5 patients are aware of the services that pharmaceutical companies offer, and only 40% of healthcare professionals are very aware of patient services, said John Hennessy, MBA, Senior Vice President, Strategist, Valuate Health Consultancy, Overland Park, KS. “Simply building the access point is not enough,” he said. “Having a HUB alone does not meet the needs of the patients” who want manufacturers to create a seamless patient experience.
Digital Technology: Target Your CORE Population
The use of telehealth is 38 times higher now than prior to the COVID-19 pandemic, according to a report by McKinsey & Company. The use of telehealth is expanding rapidly, but whether it is focused on getting value from a healthcare provider is debatable, Mr Hennessy said.
Although digital technology is revolutionizing the way care is delivered, patients still desire printed materials to read at their leisure and access to phone conversations with their providers, said Susan Raiola, President, Real Endpoints, Florham Park, NJ, a healthcare advisory/analytics agency.
Extensive research into digital technology use by oncology patients found that age was not a barrier to getting information online. “Whether patients can comprehend it and utilize what they’ve read and be able to navigate the technology is a little iffy,” said Kelly Franchetti, RN, CCRN, CEN, Senior Vice President and Global Head, Patient Insights and Strategy, YPrime, Malvern, PA. Targeting your core patient population with technology may be a better strategy than targeting specific age-groups, she said.
Copay accumulators and maximizers have resulted in patients being more exposed financially to innovative therapies, said Ms Raiola. Yet patients are reluctant to express their financial concerns with providers, sometimes out of fear that it will lead to inferior care.
The enhanced financial burden from copay accumulators may lead to delays in starting therapy, she said. One study showed that patients with chronic myeloid leukemia who had high out-of-pocket costs were less likely to initiate therapy than patients receiving a cost-sharing subsidy, even when deemed lifesaving.
A Brookings Institution report from May 2021 concluded that stopping or avoiding healthcare due to cost is a rational decision. The lack of transparency around fees and the complexity of navigating the healthcare systems also influence the decision to avoid care.
Although out-of-pocket expenses are important, they extend beyond the cost of the prescribed drug to include physician and outpatient services and preexisting medical debt. A 2018 survey of patients with metastatic breast cancer revealed that more than half had been contacted by a debt collector for a cancer-related debt. Unmet social needs include the physical, emotional, and mental health side effects of cancer and its treatments, the impact on activities of daily living, logistics (eg, transportation to clinics), and the burden on care partners.
Beyond the Wallet
Unmet needs go beyond the copay, said the panelists.
Evidence suggests an unconscious bias against financially disadvantaged patients, said Ms Franchetti. Results from a study conducted at the University of Alabama at Birmingham showed that 23% of patients who received case management and various forms of financial aid reported receiving healthcare discrimination; 36% of those based on income or inability to pay. Of those who reported that they were treated unfairly, 58% felt that they were treated unfairly by their doctor, nurse, or healthcare provider, and 41% by the healthcare system.
“Our best efforts to be patient-centric and provide high levels of support may have unforeseen negative consequences, particularly when we get into socially disadvantaged populations,” said Mr Hennessy. Flexibility with support programs is therefore a must.
When providers are informed of such bias, “you do see a shift,” Ms Franchetti said, who agreed that navigating support services and overcoming bias can be difficult. “We need to find better ways to educate physicians and advocacy groups about support services so we can get them to care partners and patients,” she said.
The overall financial burden of patients, beyond medical care, also needs to be considered. Approximately 15% of patients with cancer suffer from food scarcity, posing an even greater burden when certain medications must be taken with food, said Mr Hennessy, who posited that treatment delivered in a suboptimal setting will result in suboptimal outcomes. “It’s not just about infusing something. It’s about a whole system of care,” he said.
Listening to patients can offer insights into improving support services. For example, hormonal therapy found effective for prostate cancer in clinical trials is often interrupted in the community setting because side effects can be intolerable. “Patients have a lot to tell us,” Mr Hennessy said.
Making patient-centric programs better will require not only identifying the needs of the specific patient population, but “being nimble enough to change if something isn’t working,” said Ms Raiola.