September 6, 2016 | Read Time: 7 minutes
In March 2016, the U.S. Centers for Disease Control and Prevention issued its “Guideline for Prescribing Opioids for Chronic Pain.” A tsunami of media coverage ensued — no surprise, given the escalating national discussion about prescription pain medications. It also provided an opportunity for pain experts to step up and share their stories with the media and the public.
We at the Mayday Fund, which supports responsible medical practices for alleviating chronic pain, and Burness, a public-interest communications firm, had spent a decade preparing for a moment like this. The Mayday Pain & Society Fellows, who had completed our program to build pain experts’ communications skills, were ready to come forward and address key points and concerns in the opioid debate.
The fellowship is our response to a complex challenge: how to use the resources of a small family foundation with a national agenda to build public awareness of an issue’s importance. Outfitting researchers and clinicians with the skills to become effective communicators isn’t usually the first place a foundation looks to spend money, but we believe our approach offers a blueprint for grant makers to build a groundswell for their causes.
The Mayday Fund was launched in the early 1990s out of trustees’ concern that pain management was marginalized in medicine. The most vocal advocates on the issue were patients themselves, along with a handful of doctors who specialized in dealing with pain. More needed to be done to educate other health care professionals, policy makers, and the public about people living with severe, chronic pain.
Recognizing that Mayday’s mission was inextricably linked to better public understanding of the issue, the fund has consistently committed substantial dollars and staff time to communications. It experimented in Hollywood first, following the lead of bigger health groups in encouraging writers on medical dramas and soap operas to weave into their scripts vignettes on how pain might be responsibly treated. One minor success was a scene in an episode of ER that showed a young child being given a pinwheel to blow while getting a shot. The made-for-TV lesson was backed by research showing that distraction can reduce the anxiety that surrounds needles and pain.
But making a difference at the broader societal and policy levels called for a more refined program. In 2004, Mayday partnered with Burness, which has a history of integrating technical and scientific information into social-change strategies. Together we set out to develop an innovative model of training and coaching to build a community of skilled expert communicators.
The Model
The Mayday fellows program reflects a long-term commitment to media and advocacy coaching. There are dozens of programs and workshops to train experts in doing interviews or working with legislators. They are helpful in the moment, but once the training is done, most people go back to their labs and clinics and rarely follow through. To be meaningful, our program had to be sustained and supported — particularly because our goal was to harness a community of researchers who typically perceive “rewards” in terms of clinical benchmarks rather than public attention to their field.
We started with a boot camp of sorts. Each year, pain experts from across the United States and Canada were invited to apply for a fellowship position; six were chosen and given four days of intensive training, including mock interviews with national journalists and visits with members of Congress or leaders of federal agencies. An advisory committee of leading pain clinicians and researchers selected the fellows.
We found several factors to be vital to building a body of experts willing to be highly engaged beyond their own institutions and for the long haul:
Selection: Empanel an elite committee that reviews candidates based not only on professional accomplishments but also on their interest in learning how to better speak, write, and advocate.
Commitment: Require candidates to spend 10 percent of their time on advocacy and communications efforts over a six-month period.
Coaching: Arrange for fellows to do one-on-one planning with a communications expert to act on what they’ve learned in the months following the training.
Evidence: Emphasize that communications efforts should center on the fellow’s evidence-based work, keeping advocacy tightly focused on his or her knowledge of the field.
Impact and Legacy
There are many ways to measure the impact of a communications campaign. For Mayday, the crucial one was whether the fellows, individually and collectively, gained lifetime skills and were using them to strategically engage peers, governments, and the public in new conversations.
A 2014 survey of the 60 fellows showed how the immersive training, follow-up support, and focus on results paid off. More than half continue to spend at least 10 percent of their professional time on advocacy and outreach. Fifty-six percent said the fellowship has made a difference in improving pain care. Some have established an informal network, keeping in contact with each other and brushing up their communication skills via webinars and blogs.
Based on some of the fellows’ work, university curriculum committees are embedding classes on pain management in medical and nursing schools, getting increased funding for pain research, and changing policies in their states. One fellow gave a TED talk on why chronic pain is a disease; another became a regular contributor to the consumer-directed blog Get Better Health; another created a viral YouTube video on how parents can help their kids through painful vaccinations. Many contributed to the National Pain Strategy issued in March by the U.S. Department of Health and Human Services.
Over the years, Mayday fellows have helped refine a common language developed by earlier advocates, crystallizing a series of messages to use in interviews and meetings with policy makers: “Chronic pain is a disease.” “Pain is the No. 1 reason people go to the doctor.” “Chronic pain is a public-health crisis.”
Most participants said that without the fellowship, they would never have had the opportunity to do anything like this — their universities and medical institutions simply don’t teach or support it.
Lessons Learned
The Mayday Fellows model requires a major commitment both financially and logistically, but the benefits outweigh the risks. Here are some of the key things we learned along the way:
Long-term support is crucial. Without it, the awareness gap Mayday trustees recognized would only be filled in patchwork fashion, and the fellows would not get the time and opportunity to gel into a self-sustaining network.
So is participants’ buy-in. Academics and clinicians are some of the busiest people around, balancing medical practices, lab work, and efforts to gain funding and tenure to advance their research and their careers. Do your best to ensure your advocates-in-training can commit a set chunk of time; are willing to keep at it beyond the fellowship period; and fully understand what’s involved in stepping into the public arena on a controversial issue.
Not all fellows will succeed. Unexpected family obligations, major career moves, and other unforeseen life events can take precedence. Have patience and measure your expectations accordingly.
Training isn’t enough. It takes coaching to create habits and refine the skills necessary to make TED talks entertaining as well as informative, get commentaries written and placed, and create platforms for visual learning. Teaching is important, but coaching is what takes teaching to a practical place.
Keep the fellows connected. One simple approach: Develop an email list or online forum for all fellows to share successes and collaborate on projects. The list should be ongoing, active, and motivational.
For us, the fellowship has produced the results we envisioned a dozen years ago: a significantly greater cohort of skilled scientists and clinicians able to make the case publicly that chronic pain is undertreated and there are specific solutions to address it.
Other organizations face a similar challenge in drawing attention, funding, and legislative action to their causes. If we are truly serious about advancing solutions to pressing problems in health care and other arenas, there is a critical — and immediate — need for the expertise and voices of researchers and clinicians. Our 10-year experiment shows that coaching them as communicators, attuned to language, messaging, and the use of multiple media, can put a human face on complex and challenging issues and build the invaluable asset of public understanding.
Christina M. Spellman is executive director of the Mayday Fund. Carol Schadelbauer is a principal at Burness.
