Viewing cancer misinformation on social media negatively influenced patients’ decisions and adversely affected their mental health, according to a new study published in the journal Cancer. While online social networks can be useful resources for cancer patients, they’re also scattered with potentially dangerous misinformation.
Researchers at Huntsman Cancer Institute at the University of Utah (U of U) created a resource for scientists that lays the foundation for building clinical and patient-friendly tools called the Online Cancer Nutrition Misinformation (ONC-M). The tool tracks and organizes cancer misinformation that comes from social media.
Echo Warner, PhD, MPH, researcher at Huntsman Cancer Institute and assistant professor of nursing at the U of U, asked patients and caregivers how they used social media during their cancer experiences. “The benefits of their social media use were mired by exposure to cancer misinformation. They were met with misinformation from many sources, all the way from well-intentioned friends and family to shadow scams selling ‘cancer cures’ to the highest bidder,” Warner says.
ONC-M provides a way for researchers to document how exposure to health misinformation online influences patients and caregivers.
“It’s the first framework to document the process by which exposure to health misinformation online influences patient and caregiver health behaviors and health outcomes,” says Warner. “Before now, the lack of a clear conceptual process, and the factors that influence that process, has been a major roadblock in the study of online health misinformation.”
The ONC-M describes how cancer misinformation is organized, and also creates potential pathways linking misinformation exposure, health behaviors, and cancer health outcomes. Researchers identified several primary cancer misinformation categories and factors that associate with each type of claim. Researchers found untrue claims about cancer prevention, treatment, and cures. These claims were backed by false disclaimers, anecdotes, and misinterpreted scientific articles.
“While still somewhat early in refinement, ONC-M has broad applicability and likely extends beyond cancer-related misinformation to other health domains as well,” says Warner. “We plan to test each part of the framework and study new ways of using technology to measure how much cancer patients are exposed to misinformation online.”
Warner recommends discussing any treatment or therapy questions with healthcare providers. Patients can also use an information quality tool to help identify potential biases, financial incentives, and misleading content about cancer treatments or therapies. One example is the CRAAP test.
The study was supported by the National Institutes of Health/National Cancer Institute including P30 CA042014, the University of Arizona Cancer Center Cancer Health Disparities Training Program (T32CA078447), University of Arizona College of Nursing Eleanor Bauwens’s Research Award, University of Arizona Postdoctoral Research Development Grant, the U.S. Department of Agriculture, Agricultural Research Service under Cooperative Agreement No. 58-3092-0-001, the MD Anderson Cancer Center Support Grant (P30CA16672), the Center for Energy Balance in Cancer Prevention and Survivorship, Duncan Family Institute, and Huntsman Cancer Foundation. Key collaborators included Margaret Raber Ramsey, DrPH, Baylor College of Medicine, Tracy Crane, PhD, University of Miami Sylvester Comprehensive Cancer Center, Terry Badger, RN, PhD, University of Arizona College of Medicine, and Karen Basen-Engquist, PhD, MD Anderson Cancer Center.
Vanderbilt University School of Nursing Associate Professor Laurie Connors, DNP, FAANP, has received a grant from the National Institutes of Health National Human Genome Research Institute to train doctoral nurses—doctors of nursing practice and Ph.D. nurses—in the translation and integration of genomics into academics, research, and clinical practice. The five-year grant, called Translation and Integration of Genomics is Essential to Doctoral Nursing, aims to facilitate personalized health care through this national educational effort.
Genomics, the study of all of a person’s genes, is a growing field within health care and the burgeoning health technology space. Genomics is a complex competency and has been identified as a core trend shaping health care’s future. With the vast amount of information made available by genetic testing, data science, and advanced sequencing technologies, there is an increased need for nurses trained in genomics, who can interpret the information and translate it in a way that patients can understand.
The largest patient-facing workforce in health care, nurses play an integral role in the effective delivery of genomic health care for patients, their families, communities, and populations. Research over the past decade has shown that many nurses have knowledge gaps in the basics of human genetics, Connors said. Totaling nearly $700,000, the TIGER grant will enable Connors and her collaborators at Clemson University and Loyola University Chicago to increase the capacity and capability of doctoral nurses in genomics over the course of the grant’s timeline.
“We will deploy a ‘train the trainer’ model,” Connors said. “Our participants will take their skills back to their universities to serve as champions to incorporate genomics into curriculum, research, scholarship and clinical practice.
“Genomics impacts nursing practice across the lifespan from before birth to end of life. Nursing is one of the oldest and largest health care professions, and we must continue to ask ourselves if we have the necessary knowledge and workforce skilling to participate in genomic health care.”
An advanced practice nurse in genetics, Connors aims to close the space between students with higher levels of proficiency in genomics and their educators. In her four years at Vanderbilt University School of Nursing, she has developed and implemented multiple genomic and oncology clinical-focused courses. Her specialty in genomics was sparked by looking deeper into hereditary predispositions to breast cancer during her time as an oncology nurse.
“Nursing is a profession where you are a lifelong learner,” Connors said. “Genomics has allowed me the opportunity to pursue new knowledge and to assist individuals and families in understanding their genetic risk assessment and risk of disease and what they can do about it.”
The training Connors is developing will begin with a half-day genomics course provided at the American Association of Colleges of Nursing annual doctoral conference in January, followed by monthly webinars posted to a learning management system from February to December 2022. To find out more information about this educational project, contact Connors at [email protected].
Patty Piasecki, NP, is an orthopaedic oncology nurse at Midwest Orthopaedics at Rush. In the past, she worked as an orthopaedic trauma nurse. In that position, she says, “trauma” made it sound like she worked in the TV show ER, but in reality, it means longer hospitalizations for the patients, stays in rehab, follow-up appointments, numerous radiographic tests, and decisions about patients returning to work.
When she moved to orthopaedic oncology, though, Piasecki says that her previous experience had prepared her for more complex patients. In ortho, she admits, patients “can have multiple fractures in multiple sites as well as other injuries such as head and abdomen. It is challenging to triage the injuries. The volume of patients that need to be in ICU is huge too, so you have to always be on alert for new problems.”
As for what was the most difficult thing about working as an ortho trauma nurse, “Needing to tell a patient that they need an amputation after they fought for two years to keep the limb,” admits Piasecki.
The biggest challenge of the job was when her patients were never able to return to work. There were many rewards, though. Piasecki says that the greatest rewards were when patients were able to completely heal and get on with their lives and do things like get married, have children, or even ride their motorcycles again.
If you’re thinking about becoming an ortho trauma nurse, Piasecki suggests that you get a certification in orthopaedic nursing and working in a hospital with an orthopaedic trauma surgeon, an emergency department, or an ICU or surgical unit.
Our Nurse of the Week is 24-year-old Montana Brown, a two-time childhood cancer survivor who recently began working as a nurse at the same hospital where she was treated. After being diagnosed with rhabdomyosarcoma at two years old, a rare type of childhood cancer of the connective tissue, Brown underwent a year of chemotherapy at the AFLAC Cancer Center in Atlanta, GA. Now she is working there as a staff nurse.
Brown’s parents encouraged her to have a normal life. After actively competing in gymnastics and cheerleading for years, Brown found out she had cancer again at 15 years old. She tells ABCNews.Go.com:
“I had just tried out for my high school cheerleading team. I actually ran a mile while I had cancer and had no idea…There weren’t symptoms but my mom and dad could tell that something was different about me and they knew that something was a little off.”
After being diagnosed for the second time, Brown went to the AFLAC Cancer Center every week for chemotherapy and radiation treatments. She also learned that she would have to stop gymnastics and cheerleading. However, the experience allowed her to realize a new calling. Brown decided that she wanted to become a nurse.
“The nurses here, as great as they were when I was 2 – from what my mom says – they were extremely loving and caring and compassionate. And, just the love they showed me and my family in our time of need just really helped me. It helped me want to become as kind and as caring and as compassionate as they were for me,” Brown recalled in an interview with ABCNews.Go.com.
After her encounters as a toddler battling cancer, and later as a high school student, pushed Brown to pursue a career in nursing, she went to nursing school specifically wanting to work in pediatric oncology. Now she is working as a nurse at the AFLAC Cancer Center where her dreams have come full circle. She hopes to be a source of hope and inspiration for children battling cancer in the same place where she became a survivor.
To learn more about Montana Brown and her decision to pursue a career in nursing after becoming a two-time childhood cancer survivor, visit here.
Chin was diagnosed with multiple myeloma, a particularly deadly form of cancer, in 2009, and told she had 12 to 18 months to live. She didn’t meet Pekle until 2011, who on the same day they met welcomed Chin to stay in her Upper East Side home during treatments. Pekle also sat with Chin after an emergency hospitalization when Chin’s husband and two children were stuck at home.
Chin never took Pekle up on her offer thanks to a partnership between Extended Stay America and the American Cancer Society which gives cancer patients and their caregivers free lodging during treatments as part of a program called Hotel Keys of Hope. However, Chin never forgot the gracious offer and honored Pekle for going the extra mile by nominating her for Nurse of the Year through the American Cancer Society’s nationwide competition for 2017. Pekle was named Nurse of the Year this June, the first time the American Cancer Society honored an oncology nurse.
“We always talk about the [cancer] survivors, but we knew it was time to honor caregivers, especially the nurses who are with patients every step of the way.”
Pekle told The New York Post, “I don’t think it’s that big of a deal. I probably said something like, ‘I have a couch you can use.’ But I would have given her the bed.” But it was a huge deal to Chin, who eight years after her diagnosis is continuing to beat the odds thanks to dedicated nurses like Pekle. Amanda Kent, social-media coordinator for Extended Stay America, told The Post, “We always talk about the [cancer] survivors, but we knew it was time to honor caregivers, especially the nurses who are with patients every step of the way.”
To learn more about Pekle’s nursing background and relationship with Chin, visit here.
