Editor’s Note: At the 2018 World Congress on Pain in Boston, the biennial meeting of the International Association for the Study of Pain (IASP), researchers from around the world gathered to discuss the latest pain research. Twelve young scientists attending the World Congress were selected to provide first-hand reporting from the event, as part of a science communications training program provided by the Pain Research Forum, RELIEF’s parent site. Here, Valerie Hruschak, a PhD candidate at the University of Pittsburgh, reports on a plenary lecture delivered at the meeting by pain psychologist Christine Chambers. (RELIEF’s news coverage is editorially independent of its publisher, IASP. All editorial decisions about our reporting on IASP activities are made solely by the RELIEF editors).
At the 2018 World Congress on Pain, Christine Chambers, a pain psychologist at Dalhousie University in Halifax, Nova Scotia, began her plenary talk by reminding the audience that all pain research begins and ends with a promise: to improve the care of patients in pain.
But despite increasing evidence from research studies about how to manage pain, healthcare providers, patients, policy makers and other groups are often unaware of that evidence, which means that people with pain will never benefit from it. During her talk, Chambers explained why this is so, and what pain researchers are doing about it.
There is good news: researchers are increasingly interested in what is known as dissemination and implementation science—often referred to as knowledge translation—which is the study of how to spread awareness of research findings and implement those findings for better patient care and policy. Chambers provided examples from her own work in the pain field showing how social media can be an effective platform for knowledge translation—in this case to reach parents in particular—and that this approach is already having a positive real-world impact.
Mind the gap(s)
Successful knowledge translation is not so easy. In fact, it has been ominously compared to crossing two “valleys of death.”
The first valley represents the gap between basic biomedical research, which examines the fundamental workings of biological systems in cells and animals, and clinical science, where the focus is on human research subjects.
The second valley represents the gap between clinical science and clinical practice/health decision-making. In this case, what researchers learn from studying people never gets into the hands of “knowledge users”—the people who use research results to inform health care decisions. This includes patients, caregivers, health professionals, administrators, policy makers, and the general public. Because of this gap, patients lose out in the end because they won’t benefit from new research findings that could form the basis of new treatment approaches.
Chambers pointed to studies showing that it can take up to 17 years for basic biomedical research findings to be translated into clinical practice and health decision making. And, across health settings, it’s estimated that one-third of patients do not receive care that is supported by research evidence (known as “evidence-based care”); one-quarter of patients receive treatment that is not necessary or in some instances is harmful; and up to three-quarters of patients, and over half of physicians, report not having adequate information they need to guide decision making.
A broader view of “impact”
Chambers said that the gaps she described are evident in her field of pediatric pain.
In the 1970s and 80s, it was widely believed that babies did not feel pain and that it was not safe to use anesthetics with this population. Doctors gave babies paralytics so they would not move during medical procedures, but often did not give them anything for pain.
But while researchers now know that newborns do feel pain, and that there are sound approaches to managing pain in this population, this knowledge has not yet made its way into clinical practice.
For instance, hospitalized children today experience an average of six painful medical procedures every 24 hours, but over two-thirds of those procedures are performed without any pain management.
Chambers told the audience that she experienced these knowledge gaps firsthand when taking her four children for various emergency department visits, medical procedures, surgeries, and hospital stays over the years. She described her frustration when she and her husband, who is an anesthesiologist, had to advocate for their own children to receive evidence-based pain care. As frustrating as this was, she continued, imagine how difficult it must be for parents without this level of expertise to do the same for their own kids.
Why has it been so difficult to bridge the gaps between basic biomedical research and clinical practice? Chambers said that one factor has to do with how scientists are evaluated during their careers—with what counts as “impact.”
Academia, for the most part, values the number of publications a scientist has, along with how often those publications are cited in publications by other scientists. This is reflected in the “h-index,” which is a measure that tries to capture these two factors.
But there are other ways to assess the impact of a scientist’s work. One of these is whether and how the research actually influences patient care, something that the h-index does not take into account. For successful knowledge translation, Chambers said that pain researchers must start thinking more broadly about what “impact” can mean.
“It Doesn’t Have to Hurt: Strategies for Helping Children with Shots and Needles”
What might successful knowledge translation look like?
Social media has brought new opportunities for innovation in knowledge translation. Patients and caregivers are increasingly turning to platforms like Twitter, Facebook, YouTube, and Instagram to learn more about health topics.
Chambers is especially interested in reaching a particular group of knowledge users already quite active on social media: parents. Over 75% of parents use social media to access child health and parenting information. Given the popularity of social media among this group, Chambers and her colleagues developed “It Doesn’t Have to Hurt: Strategies for Helping Children with Shots and Needles.”
As part of this initiative, the researchers created a video in which a child explains to parents what they can do to help with pain from shots and needles, including strategies such as deep breathing, distraction, and use of topical anesthetics—all approaches supported by scientific evidence.
Since its release in November 2013, the video has received 230,000 views from over 180 countries—and parents are taking up the strategies for their kids. For example, the number of parents reporting they would use a topical anesthetic cream for their child’s pain grew from 18% to 63% after they watched the video. The video generated a substantial amount of public interest and high-profile media stories in the Globe and Mail, a Canadian newspaper, and the New York Times.
Chambers described two main lessons to take away from the video. First, researchers are not well equipped to develop content for parents. This is in part because their scholarly activity is focused on generating articles for publication in scientific journals read by fellow experts, and so they are not accustomed to developing user-friendly content for non-specialized audiences. Second, researchers often do not have the skills, resources, or capacity to ensure the implementation of their research.
Based on her experience with the video, Chambers turned It Doesn’t Have to Hurt into a larger research project focused on promoting parent awareness and the use of evidence-based information about children’s pain, through a science-media partnership.
In particular, the project partnered with an award-winning online publisher, YummyMummyClub.ca (YMC), which works with bloggers and partners to develop compelling social media content for mothers. Over 12 months, content about children’s pain with the hashtag #ItDoesntHaveToHurt, shared through blog posts, YouTube videos, Twitter parties, Facebook polls, and Instagram images that were promoted on the YMC website and social media platforms, had over 150 million views worldwide. Canadian parents were the primary knowledge users and disseminators of this content.
Chambers shared some of her favorite Instagram images from the project, including one that neatly summed up one way to manage needle pain: Breastfeeding + Needles = #ItDoesntHaveToHurt (see images and resources here). Twitter parties were also popular events in support of the #ItDoesntHaveToHurt campaign. These live, online gatherings offered parents the opportunity to interact with researchers, ask questions about their children’s pain, and have those questions answered in a way that supports the dissemination and implementation of evidence-based scientific research.
Researchers aren’t the only ones on the research team
Chambers said that she would typically end her talks with a photograph of her research team. But she now thinks differently about the word “team,” viewing it more broadly to include patients, parents and other partners from across Canada and around the world who are helping to support her dissemination and implementation efforts.
Chambers finished her talk by revisiting the promise of pain research to enhance patient care. She encouraged the audience to think differently about the field and consider how to best work in partnerships with patients, caregivers, and other groups to ensure that knowledge translation occurs.
The success of her efforts so far show that while knowledge translation is challenging to carry out, it’s achievable—and it doesn’t have to hurt.