Tag Archives: medical decision making

By Karene Booker
Reprinted from Cornell Chronicle, May 29, 2014

A screen shot from the BRCA Gist (Web-tutor) video tutorial that is designed to help explain the incidence of breast cancer in people with the BRCA mutations.

A screen shot from the BRCA Gist (Web-tutor) video tutorial that is designed to help explain the incidence of breast cancer in people with the BRCA mutations.

About one in eight American women will be diagnosed with breast cancer during her lifetime – more than 200,000 this year alone. A simple blood test can determine if a woman faces increased risk due to genetic mutations, yet decisions about whether to get the test and what to do about the results are far from simple – a fact exemplified by Angelina Jolie’s choice to undergo a double mastectomy last year upon learning she carried a harmful BRCA1 gene mutation.

To help women grappling with these decisions, Cornell psychologist Valerie Reyna and colleagues developed a computer-based system using artificial intelligence to mimic one-on-one human tutoring.

“To our knowledge, this is the first use of an Intelligent Tutoring System (ITS) in patients’ medical decision making,” said Reyna, professor of human development and director of the Human Neuroscience Institute in Cornell’s College of Human Ecology.

The breast cancer Web-tutor, called BRCA Gist (Breast Cancer Genetics Intelligent Semantic Tutoring), is more effective in helping women understand breast cancer risk and their options than traditional educational materials, reports a study published online May 14 in Medical Decision Making ahead of print.

BRCA Gist provides customized instruction on breast cancer and how it spreads, risk factors, genetic mutation testing and the consequences of testing using an animated talking avatar that engages women in “dialogue” about breast cancer and can even answer women’s questions.

The Web-tutor draws on well-vetted, publically available information and expert advice from physicians, “but the crucial added ingredient,” said Reyna, “is that it effectively conveys the bottom-line or gist of the information.” And that’s what people rely on to make medical decisions, not detailed facts, she said. The key to the Web-tutor’s success, she added, is its basis in fuzzy-trace theory, a model of memory and decision-making that she developed.

To test the Web-tutor’s effectiveness, the researchers conducted two randomized-control trials involving more than 400 women. The studies measured knowledge gains and decisions about genetic testing after completing the new Web-based tutorial, viewing the comparable information from the National Cancer Institute (NCI) website or completing an unrelated Web-based curriculum.

The team found that those who participated in the Web-tutor scored higher on knowledge of breast cancer, genetic testing and genetic risk than those using the NCI website, and both groups scored higher than the control group. In making judgments about genetic testing for those with no risk, the Web-tutor helped participants understand that most women do not have known genetic risks and are not good testing candidates, the authors say. Their results support the concept that a gist-based intervention powered by artificial intelligence can be an effective tool to aid patients’ medical decision-making, they concluded.

The study, “Efficacy of a Web-based Intelligent Tutoring System for Communicating Genetic Risk of Breast Cancer,” was supported by the National Cancer Institute and the National Institutes of Health. The co-authors are Christopher Wolfe, Colin Widmer, Elizabeth Cedillos, Christopher Fisher and Audrey Weill of Miami University of Ohio, and Cornell graduate student Priscila Brust-Renck.

Karene Booker is an extension support specialist in the Department of Human Development.

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The Paper

By Karene Booker
Reprinted from Cornell Chronicle, February 19, 2014

Pillemer

Pillemer

A low-cost, six-week program that teaches people how to manage pain and stay active has proven to reduce arthritis pain and disability, yet few of the nation’s 50 million adult arthritis sufferers have used it. By enhancing the program’s content and delivery with the help of community partners, Cornell researchers report that attendance improved dramatically, and participants were significantly more likely to stay in the modified program compared to the original, while experiencing the same physical and mental health improvements.

“Effective health programs may not reach people who need them due to factors such as culture, language, age or income, but changing programs to meet the needs of new target populations can make a dramatic difference,” said study co-author Karl Pillemer, professor of human development in Cornell’s College of Human Ecology.

The study, which was published in February in the Musculoskeletal Journal of the Hospital for Special Surgery (Vol. 10:1), focuses on the Arthritis Self-Management Program, also known as the Arthritis Self-Help Course.

Reed

Reed

“To our knowledge, this is the first controlled study to directly compare the effects of an adapted chronic disease self-management program with the original,” said co-author Dr. M. Carrington Reid, associate professor in geriatrics at Weill Cornell Medical College. He added that rigorously evaluating modified programs such as this one to ensure they still deliver the expected benefits is rare, but critical.

To modify the underutilized program, Reid, Pillemer and his colleagues collaborated with a team of staff from local agencies and senior centers, older adults and program instructors. The team incorporated nearly 40 enhancements suggested by program participants and instructors, such as adding in-class exercise practice and individual action plans to make use of local health programs, expanding information on healthy eating and weight management, and simplifying reading materials.

The adapted and original versions were tested with 201 older adults, with baseline data collected at the beginning, at program completion and 18 weeks later. While both groups experienced equivalent relief in pain, stiffness and perceived disability, attendance in the adapted program improved by 46 percent, and participants were 26 percent more likely to stay in the modified program than in the original.

That means that the modified program could have significantly more reach and impact, the authors say. Their findings not only underscore the value of involving local stakeholders in tailoring interventions to specific populations, but also the importance of conducting controlled experiments to quantify the results, they say. Furthermore, they add, their findings highlight the potential of relatively simple programs to help build self-efficacy for arthritis management and improve quality of life.

The study, “Measuring the Value of Program Adaptation: A Comparative Effectiveness Study of the Standard and a Culturally Adapted Version of the Arthritis Self-Help Program,” was also co-authored by graduate student Emily Chen and senior research associate Charles Henderson of Cornell, and Samantha Parker of Tulane University School of Medicine. It was supported in part by the National Institute of Nursing Research and the National Institute on Aging.

Karene Booker is an extension support specialist in the Department of Human Development.

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By Karene Booker

Reyna

Despite the success of vaccines in preventing a long list of diseases, why is opposition to vaccination gaining hold? Decision-making expert Valerie Reyna contends that it’s because anti-vaccination messages tell a compelling story compared with official sources, and they meet people’s need to understand rare adverse outcomes.

A Google search of “vaccine,” for example, produces links to government and science-based vaccine websites on the same screen as official-sounding anti-vaccination links.

Given the success of vaccines in preventing a long list of diseases, why is opposition to vaccination gaining hold? Decision-making expert Valerie Reyna contends that it's because anti-vaccination messages tell a compelling story compared to official sources, and they meet people's need to understand rare adverse outcomes.

"In the era of Web 2.0, the contagion of ideas, transmitted rapidly through social media, is as concerning as the contagion of diseases because of their power to reduce vaccination rates, leaving populations vulnerable to preventable death and disability," said Reyna, professor of human development in the College of Human Ecology and a co-director of the Center for Behavioral Economics and Decision Research.

This spring, the Centers for Disease Control reported that the United States is experiencing the highest number of measles cases in more than a decade. According to the alert, measles was declared eliminated in the United States in 2000 due to a high vaccination rate. This could change should vaccination rates decline.

Reyna presented her model of vaccine decisions at the University of Erfurt, Germany, in May to an international meeting of scientists examining the implications of the Internet and social media such as Twitter on public health messages about vaccination.

Being informed about vaccines involves more than having the facts. According Reyna's research, people primarily rely on the meaning or "gist" of a situation rather than details to make judgments and decisions.

"Gist is simple, but not simple-minded," Reyna said. "It involves connecting the dots -- building on background knowledge, life experience and values. When people lack background knowledge, they tend to rely on anecdotes, personal experience and the little information that is widely available."

Since most people don't understand how vaccines work, the Internet, which facilitates users across the globe to sharing personal experiences and ideas about health care, fills the vacuum.

According to Reyna, anti-vaccination messages are expected when people don't understand how vaccination works and when adverse events that are difficult to explain appear to be connected. Autism, for example, is diagnosed in children during the same time period that children receive a battery of vaccinations. Despite research to the contrary, anti-vaccination messages have claimed vaccines are to blame. Official sites, on the other hand, tend not to provide a convincing narrative story line that helps people connect the dots.

Under these circumstances, how do people approach the decision to vaccinate? In Reyna's model, the decision to get a flu shot, for example, could be a seen as a decision between feeling OK (by not getting the vaccine) or taking a chance on not feeling OK (due to a vaccine side effect). Without better information, many people would choose not to get a vaccine.

"Public health messages need to be designed so that the correct 'gist' pops out," Reyna said, "because the drive to extract meaning, combined with widespread lack of background knowledge about how vaccination works, is fertile ground for misleading explanations to take root."

The conference was supported by grants from the German Science Foundation, the European Center of Disease Prevention and Control, the University of Erfurt and other sources.

Karene Booker is extension support specialist in the Department of Human Development.

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Department of Human Development
Valerie Reyna