Cancer patients take more proactive roles in their care
An emerging population of newly empowered cancer care consumers is making their care preferences and priorities known. To attract and retain these patients, cancer centers must respond positively by providing the quality, convenience, support services and improved outcomes they want.
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Recently, the Advisory Board Company conducted a national poll, the Cancer Patient Experience Survey, which provides important insight into what these patients and their families want most when it comes to cancer care. Cancer centers can use these insights to design their programs to more closely meet patients’ needs and preferences.
Cancer patients have become increasingly self-directed and proactive in learning about their diagnoses, aided by access to online medical information.
Survey participants reported that, in addition to seeking disease-specific information, they want to know about support services, program accreditation, and performance and patient experience data.
“I think this is a positive development,” says Brian Bolwell, MD, FACP, Chairman of Cleveland Clinic’s Taussig Cancer Institute. “There are many very good websites that patients and family members can use to educate themselves. There are also some sites that provide less-than-useful information, but that is true of any subject you might research on the Internet.”
The survey report recommends that, when possible, healthcare organizations make reliable information available to the public through their websites in the form of downloadable, condition-specific guides or online articles and blogs.
Armed with this information, newly diagnosed patients have the basis to ask questions about their illness. But cancer affects more than just the individual patient, Dr. Bolwell notes. Often, family members or other loved ones have their own questions, based on information they’ve found online.
“Oncology is advancing rapidly and that translates into increasingly complicated treatments,” Dr. Bolwell explains. “Well-informed patients and their family members will know how to ask questions about their specific type of cancer, their available treatment options, and any short-term and long-term effects they may have.”
Diagnosis at a young age is not uncommon in some cancers, and cancer programs must address the unique needs and values of these younger patients, Dr. Bolwell says.
Young people have grown up in a technologically rich environment and value the opportunity to handle certain healthcare tasks through their mobile devices. “They want to schedule appointments, connect with nurses and physicians, refill prescriptions and receive lab results over their smart phones or tablets,” Dr. Bolwell says.
Electronic medical records have helped facilitate this by making the flow of information significantly easier.
A few cancer centers around the nation have developed programs that focus on meeting the needs of a digitally empowered, younger population. “For example, we have a specific clinic geared toward young women with breast cancer,” Dr. Bolwell says. “In addition to providing clinical diagnoses and treatments, the clinic offers resources on social media, including online peer support groups.”
Support services are a critical part of patient-focused cancer care programs. Dr. Bolwell emphasizes the importance of managing the psychosocial challenges cancer patients face. “So much of modern society is centered on social networking, and the 4th Angel Network is a support service, conceived by Olympic gold medalist and cancer survivor Scott Hamilton, offered through Cleveland Clinic,” he says. “The network provides local mentors who give emotional support and encouragement to cancer patients.”
Patients can connect online, over the phone or in person with a trained mentor who has been through the same type of cancer and same treatments.
“It is our job to make things as easy for the patient as possible.”
Another important insight gleaned from the survey is that cancer patients prefer to receive all their care in one building. At many cancer centers, having all providers in one place is difficult to achieve, but Dr. Bolwell believes that, wherever possible, it’s the right thing to do. The rationale is more than just convenience, he says.
“Cancer patients are extremely frightened,” Dr. Bolwell explains. “This is not where they want to be. This is not the diagnosis they want. And they are uniformly scared that they will not survive. Given those anxieties, it is our job to make things as easy for the patient as possible.”
Having services and clinical offerings in one location provides continuity and alignment of care — a true multidisciplinary approach to comprehensive treatment. “That is why we are building a new cancer facility at Cleveland Clinic — to facilitate that and have everything centrally located,” says Dr. Bolwell. This approach gives patients optimal care on a number of fronts, including:
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