Capturing Patients’ Real-World Experiences to Improve Cancer Research and Care

A Q&A with Grace Castillo-Soyao, founder and CEO of Self Care Catalysts;

Q: You are well known as a visionary in the field of Real World Experience-Evidence (RWEE). As the founder and CEO of Self Care Catalysts, headquartered in Toronto, how do you see RWEE evolving to favorably impact the field of oncology?

A: I started Self Care Catalysts with some very basic questions. Why is the patient at the farthest end of the care line, treated as simply the recipient of care? It’s a very industrial mindset, a bit like an assembly line; the patient as something to be acted upon. But patients are often experts at their own conditions, including the many kinds of cancer. Why are they not invited to become participants in their own care, in contributing their own experiences? Why are patient experiences not considered to be scientifically valid?

As noted physician Sir William Osler famously said, “It is much more important to know what sort of a patient has a disease than what sort of a disease a patient has.” Continue reading…

The Healing Power of Your Own Medical Records

“Steven Keating’s doctors and medical experts view him as a citizen of the future.

“A scan of his brain eight years ago revealed a slight abnormality — nothing to worry about, he was told, but worth monitoring. And monitor he did, reading and studying about brain structure, function and wayward cells, and obtaining a follow-up scan in 2010, which showed no trouble.

“But he knew from his research that his abnormality was near the brain’s olfactory center. So when he started smelling whiffs of vinegar last summer, he suspected they might be ‘smell seizures.’

“He pushed doctors to conduct an M.R.I., and three weeks later, surgeons in Boston removed a cancerous tumor the size of a tennis ball from his brain.”

How A Group Of Lung Cancer Survivors Got Doctors To Listen

“A group of lung cancer survivors was chatting online last May about what they thought was a big problem: Influential treatment guidelines published by a consortium of prominent cancer centers didn’t reflect an option that several people thought had saved their lives. They wanted to change that.

“The guidelines from the National Comprehensive Cancer Network are important because they’re often a first stop for an oncologist trying to develop a treatment plan after a patient’s diagnosis, Chris Newman, one of the patient group’s members, told Shots. But the guidelines don’t always reflect newer and less proven treatment options that may be offered only at big academic cancer centers, she said. Patients might miss out on treatments that could help them, if the guidelines aren’t up to date.

“That’s what Newman and others thought was happening for some patients with a type of advanced non-small cell lung cancer. When cancer has spread, or metastasized, beyond the original site, it’s diagnosed as stage IV. And it’s historically been a pretty black and white diagnosis. With most forms of cancer, you have metastases or you don’t, says Paul Okunieff, a radiation oncologist and director of the University of Florida Health Cancer Center. Patients whose cancer has spread are often offered chemotherapy or supportive care rather than surgery or radiation to remove the tumors, on the assumption that it’s too late to prevent further spread.

“But some research suggests that patients with oligometastases, or a limited number of tumors (Okunieff says it’s fewer than three or five, depending on whom you ask) may get significant benefit from more aggressive treatment. That possibility wasn’t reflected in the NCCN guidelines.”

Guide Helps Oncologists Fit Shared Decision-Making Into Everyday Practice

“A panel of healthcare experts has put together a practical guide to implementing shared decision-making that summarizes its benefits and challenges and provides tips for integrating the model into busy oncology practices.

“Shared decision-making is different than simply providing patients with evidence-based information, wrote the authors of a review article published in CA: A Cancer Journal for Clinicians. The goal is to create a plan of care that is both consistent with medical evidence and personalized to each patient by helping patients and families make decisions that take into account their specific needs, values, and preferences.

“Surveys suggest that many oncologists are interested in engaging patients and families in treatment decisions but perceive practical barriers, the authors said. Some of the most commonly cited include time constraints, insufficient provider training, and inadequate clinical information systems. Physicians also express concerns related to patient anxiety, misinformation, and unwillingness to participate.

“The authors acknowledged that while shared decision-making is likely to improve patient outcomes, the process is complex and puts significant demands on physicians’ time. Care often involves multiple specialists and decision points when patients need to understand how one decision affects another, such as the implications of undergoing neoadjuvant therapy on surgery treatment options, and vice versa. In addition, patients often need to revisit decisions as their goals and preferences evolve.”

Melanoma Risk Genetic Testing May Help With Prevention

The gist: Genetic testing can help predict a person’s risk of getting melanoma. A recent study found that people who receive genetic testing for melanoma risk might be prompted to discuss melanoma risk and prevention with more family members.

“Positive genetic risk information about melanoma may help to prompt people to discuss melanoma risk with a wider variety of family members, according to a study published in JAMA that examined the effects of hypothetical genetic testing. Interestingly, even people who received negative genetic testing results were still affected by the results.

“ ‘This study shows us that individuals are sensitive to receiving genetic risk information, regardless of the results, and will likely increase their willingness to discuss melanoma risk and prevention strategies with their families after receiving this type of feedback,’ said study author Mallorie Gordon, MA, of the department of psychology, New School for Social Research, New York, New York.

“ ‘This study indicates that providing genetic risk information to patients and their families may not only improve their understanding of their particular skin health needs—specifically telling patients whether their melanoma risk is related to heredity or sun exposure, as defined by the feedback type of the genetic test—but also improve the risk communication that exists around melanoma and its prevention overall,’ she told Cancer Network.”

Powerful Patients: Highlights and Takeaways from the 2014 Personalized Medicine World Conference

Every year, scientists, doctors, and representatives from pharmaceutical, diagnostics, and technology companies gather in Silicon Valley to talk shop at the Personalized Medicine World Conference (PMWC). For 2 days, they discuss the triumphs and challenges of diagnosing and treating diseases based on patients’ distinct genetic characteristics.

This year, the PMWC status quo was interrupted by a not-so-unlikely guest: the patient. Cancer Commons joined the event’s organizers to cohost a series of informative presentations for patients and advocates, delivered by doctors and researchers, as well as patients and advocates themselves. Continue reading…

Smart Patients: Groundbreaking Website Supports Conversations among Cancer Patients

Cancer Commons is thrilled to report the public launch of Smart Patients, a new online discussion platform for cancer patients and their caregivers that will enable them to learn from each other and improve their care. The free website lets users share insights about personal treatment experiences, discuss breaking science, and search for clinical trials.

“Many patients are incredibly self-motivated,” says Roni Zeiger, MD, Smart Patients cofounder and former chief health strategist at Google. “They are already finding the most cutting-edge science and we are providing them with a new way to discuss and disseminate this knowledge.” Continue reading…