In order to enhance patient engagement and improve outcomes, the healthcare industry needs to move beyond the standard patient-centric approach that focuses on individual knowledge and motivation. At this roundtable, moderated by MM&M‘s Jaimy Lee, industry leaders discussed why a social-centric approach is especially important in oncology, particularly as it relates to health systems, interactions with healthcare providers, and family support.
Recent years have brought stunning advances in the fields of cancer diagnosis and treatment. The move beyond short-term treatment to long-term maintenance and support calls for new approaches to patient engagement and education.
This roundtable discussion focused on the idea of “social centricity,” which takes into account the contexts that shape individual behavior. As patients live longer with cancer, they’re taking more ownership of their health rather than blindly following a treatment plan mapped out by their healthcare provider. Stakeholders from several types of organizations came together to explore the promise and the challenges of social centricity in the category of breast and ovarian cancers.
CHALLENGES IN COMMUNICATIONS
Dave Querry, president of Navicor, started things off on a positive note. “It’s wonderful that people are living longer with cancer,” he said. “That longevity gives them the opportunity to become more engaged, better educated, and part of the treatment dialogue from diagnosis all the way through.” A lot of social influences are impacting or offering support to these individuals, he noted. And the changes in patient longevity mean that the way the industry communicates with patients must change.
“When I started in oncology, your decision was about treatment,” said Christine Verini, chief business development officer of the nonprofit organization CancerCare. “Now there are other challenges as well, regarding access and cost containment, which mean patients must make even more decisions.”
Kristin Ainsworth, VP of marketing at Tesaro, sees communications challenges brought on by the pace of biotech advancements. “We now have very sophisticated tools for diagnosing and treating patients,” she said. “As the treatment plan has changed, the conversation has changed — from a didactic ‘here’s what we have for you’ to more of a consultative dialogue with patients and caregivers.”
Linda House, president of the nonprofit Cancer Support Community, feels that some gaps in communications result from the absence of standardization. Patients must be screened for depression in the oncology care model, House pointed out, which has led to HCPs opening their eyes to a “whole new world of the patient experience. Often, physicians don’t know that patients need help, patients may not realize it themselves, and caregivers are too busy putting food on the table and getting people to appointments.”
Clearly, there’s an opportunity for the industry to help HCPs connect with patients. Ainsworth offered the example of something Tesaro does well. “We train nurses to have dialogues with individuals about supportive care needs. We have a number of cancer survivors and individuals undergoing treatment who keep us grounded in what the experience is like.”
Tesaro makes a point of connecting with all the participants in their clinical trials. “We couldn’t bring forward better medicine without the men and women who have committed their time, their bodies, and their minds, along with their families’,” she adds. “We talk with them throughout the experience, and at the end we ask what we could have done better to educate, support, and counsel them.”
House is excited about how patient-led care is evolving. “We’re moving to where patients are the quarterbacks of their own care.” While the older generation of healthcare providers is still more directive, the younger group understands that concept. “And we have the opportunity to influence that,” she said.
EMPOWERMENT AND MIXED MESSAGES
Over the past 10 years, patient advocate and consultant Kimberly Jewett, a two-time breast-cancer survivor, has watched patients becoming their own advocates. “They want to engage with their healthcare professional, and when they can’t get access they seek it out,” she said. Jewett also sees the need to give patients the tools they need to feel educated and empowered. “It really does come down to that whole social-centric approach.”
In Querry’s view, the way we communicate with people experiencing a healthcare crisis could be the most important step to getting the dialogue right. “We have to keep in mind that they’re people first and patients second. They have careers. They have families. They have lives. Yes, they’ve been diagnosed with a disease,” he stressed, “but they’re going to get through it and they need support.”
Kathleen Starr, managing director of inVentiv Health Behavioral Insights, remains concerned about mixed messages. “We’ve got healthcare providers, industry, insurance companies, advocacy — how can we better partner with one another?” she asked.
“I feel as though the approach we have now is a bit siloed,” she said. “It’s the HCP messages. It’s the patient messages. It’s advocacy. Could we create a communications matrix so we’re all speaking the same language and making it less confusing?”
To Starr’s point, Verini added, “We need to recognize that cancer affects you physically, emotionally, and spiritually. There are different facets of how and when you communicate. We’re seeing an increase in support groups. It shows that patients recognize the need,” she said.
FACING UP TO DISTRESS
Because the need for psychosocial support is still seen as a weakness by some, House said that her group is shifting away from words like “emotional.”
“Instead, we use ‘experiential’ when we talk about the way you’ll live your life with cancer,” she said. They ask patients about the elements of their lives that are most important, their financial situation, and what they think will happen. “Lots of patients base their decisions on what they perceive as the family burden,” said House. “We need to get that out into the open.”
In a 3,000-patient survey conducted last year, Verini said, “We learned that more than a third of healthcare providers aren’t referring patients to social workers. We also learned that younger patients face more emotional and financial distress than older ones — there are children to get to school, meals to make, mortgages to pay.”
Starr echoed these concerns. “People don’t make decisions in isolation,” she explained. “They make them within a context and broader system. This is really important because it impacts decision-making. It impacts both short- and long-term behavior. It’s going to be more and more important.”
Despite the increase in treatment success, many people have the same reaction to hearing the word “cancer.” “They still think that’s it. It’ll be a fight and then they will die,” Querry said.
“If we want people to really take ownership of their healthcare, we have to get ahead of the dialogue before the diagnosis. Industry, advocacy, manufacturers, and healthcare systems need to frame people’s expectations before entering,” Querry added.
Ainsworth agreed that individuals diagnosed with cancer are especially vulnerable. “Many feel as if it’s their fault,” she said. To her mind, doctors don’t always ask the right questions. A conversation with such behavioral questions as “What did you do this week?” and “How often did you get outside?” can accurately measure a patient’s distress level.
Adding to the distress, Ainsworth noted, is, “We’re not training care partners to provide support at home. As a care partner myself, I often don’t know what to do. So there’s an opportunity to help people understand what your loved one is going through and how to help.”
Jewett agreed that it’s no longer just about the patient. “It’s all-encompassing, and it can be overwhelming. How do we provide support and resources and education,” she asked, “for the care partner and the patient and their family?”
House offered the Cancer Support Community’s Open to Options program as a good approach to support.
“After a treatment decision–related counseling session with a social worker,” she noted, “patients get a printout to take to their HCP so they can say, ‘Here’s what’s important to me before that final decision.’” Physicians report that they save time when patients show up with well-thought-out questions, and patients say they’re more satisfied with the interaction.
“We can certainly do more to help people get clarity on what really matters to them,” said Starr. “Social workers use techniques like motivational interviewing, and there are other ways to help people’s understanding. And we have to revisit the issues, because after the initial treatment, other decisions have to be made.”
CancerCare is currently developing a tool that will give healthcare providers questions to better understand a patient’s daily activities. “Patients call us about issues like transportation and housecleaning, but they don’t talk to their physician about these things,” Verini said. “So education is key — not just about treatment, but about what’s valuable to you in this experience.”
Ainsworth addressed the related issue of respecting decisions. “Sometimes people decide not to pursue treatment, perhaps to avoid burdening their support network,” she said. “It’s difficult for an HCP or a care partner to see that. But whatever care and education we provide, individuals are going to decide what’s right for them. That may mean doing nothing, and we need to be OK with that.”
“It’s true that patients and care partners are often overwhelmed,” Jewett said, “and the inconsistent information they’re getting doesn’t help.” To help rectify that, the industry, agencies, and advocacy groups should work together to develop standardized tools and resources that can help to empower patients and care partners. “It’s so important that we learn to collaborate and offer resources that will make this experience less overwhelming for all concerned,” she added.
As Querry said, “I’d love to see the organizations developing breast-cancer therapies pool their resources with advocacy groups to put out public service messages that will reach people ahead of the diagnosis. Companies have to say, ‘It’s not just the therapy — we have an obligation to serve the community.’”
Words have power, and perhaps never more so than in matters of grave illness. Kristin Ainsworth, of Tesaro, talked about some of the lessons she and her colleagues have learned. “First, women living with ovarian cancer don’t want to call their cancer experience a ‘journey,’” she said. “‘Journey’ suggests an end. They’d rather think of it as an ‘experience.’”
And “welcome kit” isn’t so welcome, either. These kits — collections of brochures, samples, and other collateral materials — are often given out by pharmaceutical companies to people newly diagnosed with a condition. “In one of our focus groups,” Ainsworth said, “a woman said sarcastically, ‘Oh, thank you for welcoming me to cancer. I don’t want that.’ So we call it a ‘starter kit’ — the start of your experience with this product.”
Other words to avoid: “We say ‘people,’ not ‘patients,’” said Dave Querry, Navicor. “‘Patients’ brings up defense barriers.”
Linda House, Cancer Support Community, suggested steering clear of battle analogies and words like “suffering.”
“‘Help with your motivation’ is condescending,” offered Kathleen Starr, inVentiv Health.
And instead of “patients,” Ainsworth said, “We say ‘people bravely facing cancer.’” She remembers one woman telling her: “I’m not just a cancer ‘survivor’ — that suggests I barely made it through.” Ainsworth’s take: “Not only have they made it through, they’re happy and content. They want to be seen as thriving.”
Agreeing that language is critical, Kimberly Jewett, Kimberly Jewett Consulting, believes that everyone’s doing a better job of gaining insights from those who are bravely facing cancer and also gaining the care partner perspective. “And when we’re sensitive to the words we’re using,” she said, “the materials we develop will resonate more deeply — and engage patients that much more.”
What’s an example of how the web or patient empowerment has impacted the way healthcare stakeholders talk about cancer?
Ainsworth: The positive side is that patients are more vested in their care and more involved in their treatment journey. The downside, for HCPs, is that patients doing research on the internet tend to run across material and products that may not be relevant to their condition.
Querry: Information is getting so truncated. People see a headline and immediately buy into it. If millennials want to be the learned intermediary, they have to spend more time contextualizing information, and not in 140 characters. That dynamic will be a huge challenge for advocacy, pharma, and healthcare communications in general.
Starr: We need to take a broader perspective in our communications regarding oncology, looking at it from the standpoint of the healthcare system and in a family context. We’re moving more toward that, and as we look at the long-term journey, it’ll become increasingly important.
Verini: There used to be a little information — now there’s a lot of it. That change needs to be addressed. While social media is great in many ways, it’s short and quick, I don’t know how much people really get out of it. That aspect of communications is challenging for a person living with cancer.
What are the challenges or barriers to making these types of improvements in communicating with patients?
Ainsworth: The media are only too eager to publish the next bad drug-pricing article. Why don’t we encourage them to highlight our wonderful products and partnerships with advocacy partners and payers and other constituents? Media channels are a cost-effective way to send out a consistent message. It’s difficult to get reporters off the bad story and onto the good, but it’s necessary.
Querry: The healthcare system is fragmented. Everybody has different priorities. About 65% of patients are being treated by community physicians that aren’t part of an integrated network. That’s changing, as oncologists sell their practices to merge into larger organizations, but they’re doing it predominantly to control patient-referral networks, not to gain a more integrated model.
Starr: These patients are highly motivated, and the context they’re working in is limiting — the system itself poses barriers. We need to start thinking not just how do we push the individual patient into decision- making, but what can we do holistically to make their path easier? They’re the ones facing barriers. We need to be breaking them down for the patients and their families.
Verini: There’s no consistent message with communications in oncology. For everyone to be aligned, you need to get the five Ps together: patients, payers, physicians, pharma, and policymakers. But how do you get insurance companies to sit around the table with pharma or to sit around with policymakers? That’s a challenge, and it would cost a lot of money
What’s one way the industry or the system can help people get the support they need during cancer treatment?
Ainsworth: Our oncology nurses are the individuals that patients and care partners open up to, either in the days after treatment or in follow-up visits. As we educate, coach, and empower oncology nurses to have conversations and offer resources, we’re creating a wonderful union that supports patients and helps identify what they need.
Querry: The industry needs to educate people before they get a diagnosis. It has to be done in a respectful, tasteful way. The moment the diagnosis happens is not the time to start educating people about their needs — they won’t be too receptive at that point. You have to reach them ahead of the game, and get them thinking proactively.
Starr: The industry can give physicians better language to communicate — that is, more than just numbers and stats.
This feature has been updated.