New research institute aims to improve medical communication.
By Karen L. Brooks
Anne Cappola, MD’94, ScM, had a light-bulb moment the day one of her patients referenced a dubious website and requested nonstandard testing and therapies for her thyroid disease.
Medical experts needed to find better ways to communicate accurate information and counter misinformation, thought Cappola, a professor of Endocrinology, Diabetes, and Metabolism and an associate editor for the Journal of the American Medical Association. And she was going to help them do it.
“I started thinking about the disconnect between what I see as an editor of these rigorously reviewed journal articles and the papers patients were printing from the internet and bringing to clinic,” she says. “There is this flow of medical information from journals to the media to patients themselves, and there are clearly problems along the way.”
To pinpoint those problems, Cappola dreamed up – and launched – an academic center unlike any other she was able to identify nationwide: the Penn Medical Communication Research Institute (PMCRI), a collaboration between the Perelman School of Medicine and the Annenberg School for Communication. Since its kickoff with a medical misinformation-focused symposium in October 2021, the PMCRI, which Cappola directs, has awarded funding to five pilot projects, each exploring a different facet of medical communication and comprising at least two investigators from different schools or departments.
“The purpose of this is not for me to do my own research, but to get others across Penn engaged in medical communication as its own research discipline,” Cappola says. “The beauty of allowing people to work on what they want to work on is in the creativity and originality of the ideas that came through. If I had suggested topics myself, I could not have come up with the things they did.”
Although medical misinformation has dominated global conversations since the emergence of COVID-19, Cappola conceptualized the PMCRI in late 2019 and never intended it as a response to the pandemic. Still, given the timing of its launch, she was not surprised when several faculty members submitted coronavirus-centered proposals. One of those selected for pilot funding came from Jessica Fishman, PhD, an instructor of Psychiatry with appointments in PSOM and Annenberg who is also director of Penn’s Message Effects Lab, which supports clinical researchers in using social psychology to develop health-related behavioral interventions.
With a goal of increasing COVID vaccination rates in lower-income communities, Fishman and her PMCRI co-investigators – who span PSOM, Annenberg, and Penn Nursing – are partnering with the Philadelphia Department of Public Health to test varying messages with unvaccinated residents of West Philadelphia. Many public health communication campaigns have backfired because they failed to base their interventions on scientific evidence, Fishman says, citing the famously unsuccessful DARE (Drug Abuse Resistance Education) campaign of the 1980s. She wants to prevent other health professionals from making similar mistakes.
“If you don’t use science to determine the right set of beliefs to focus on when you communicate, you’re missing opportunities,” she explains. “The Institute is a way to build more bridges between the Penn schools and do this scientific matchmaking, so we can bring all our different training together to address questions collaboratively and collect empirical evidence before an intervention is launched.”
In Fishman’s case, that evidence will show which vaccine myth-busting strategies are most effective with the demographic her group is studying: presenting a myth followed by a fact; sandwiching myths between facts; presenting facts only; and flagging myths only. “Then, down the line, we can also see whether the communication strategy that works the best for COVID vaccination will also apply to other vaccines, like the flu and HPV [human papillomavirus],” she says.
A second COVID-related project, led by investigators from the School of Nursing and the School of Engineering and Applied Sciences, is testing vaccine messaging among parents of young children – but the remaining three PMCRI pilots vary significantly. One is exploring ways to motivate more Black parents to enroll their children in clinical trials (Fishman is also supporting that effort); another aims to reduce race and gender biases among resident physicians; and the third is assessing targeted health care advertising online.
Ari Friedman, MD’16, PhD, an assistant professor of Emergency Medicine, is spearheading the web advertising study alongside Matthew McCoy, PhD, an assistant professor of Medical Ethics and Health Policy. The ubiquity of internet data tracking piqued Friedman’s interest during his residency, when he was alarmed that declining his Web browser’s “cookies” — which trap and save details about a user’s activities – barred him from accessing content on many reputable sites, even those associated with the nation’s most prestigious medical journals.
As co-leaders of the Penn-CMU (Carnegie Mellon Univernsity) Digital Health Privacy Initiative, Friedman and McCoy have since completed multiple studies mapping tracking across health-related web pages and have reported that a striking 98 percent of them integrate third-party data requests.
“What are the implications of that?” Friedman wants to know. “If you search for a disease or medication, are you shown more ads for pharmaceutical products and devices? How about for non–FDA-regulated nutraceuticals and sham cures that are expensive and a waste of your money?”
Funding from the PMCRI will support Friedman and McCoy in building a tool to correlate people’s web-browsing histories with the type of health-related ads displayed in their browsers and social media accounts, as well as to classify those ads according to their inclusion of accurate information, misinformation (inaccurate content), and disinformation (deliberately deceptive content). Identifying these potential barriers to good communication is important, says Friedman, because “the whole web ecosystem of medical information is more complicated than most people realize.”
“If you consult ‘Dr. Google,’ there are even problems when you access correct information,” he notes. “Say you visit the Mayo Clinic homepage, which is a wonderful source of generally reliable information. The Mayo Clinic homepage has advertising trackers on it, meaning if you read about a particular condition, as a result, you may be targeted [by third parties] for some commercially motivated or not-well-vetted information that ends up causing you to doubt the facts you just read.”
Cappola shares Friedman’s concerns about the threats posed by ambiguity and conflicting sources. Many patients come to her for second opinions, she says, unconvinced that their first physician advised them appropriately – but she rarely finds a reason to change their medications or order new tests.
“All I do is present the same information in a way that they understand it and feel heard,” she says. “Their doctors were not bad doctors – they were recommending the right things but communicating in a way that their patients just didn’t buy it.”
This fall, Cappola plans to host another PMCRI symposium, followed by a second round of project funding, open to applications from faculty from any Penn school. The aim is that research findings will help improve patients’ health literacy over time.
“This is not about getting up and saying, ‘We are the source of good information,’” she explains. “It’s about doing rigorous research and applying known principles in communication to find out how we can best inform people and affect their health in a positive way. If we just focus on the medicalization of things and not the communication part of our work, we are never going to deliver the care that we want to.”