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November 20, 2015
PUSHING AT THE EDGES
‘Digital Summit’ Explores New Ways to Communicate Health, Science

Susannah Fox, chief technology officer at HHS,
and John Burklow, head of communications at
NIH, take questions after her summit keynote.
Susannah Fox, chief technology officer at HHS, and John Burklow, head of communications at NIH, take questions after her summit keynote.

Here’s looking at you, alpha geeks. We’re counting on you to help us tell the stories of science and medicine in the years ahead. That’s what one keynote speaker, HHS Chief Technology Officer Susannah Fox, told attendees at the first NIH Digital Summit on Oct. 19.

“My mission and purpose in life is to stay close to the edges of medicine and science,” she said, describing the 15 years she’s spent following people who are living with life-changing diagnoses and rare conditions. “Because I really believe they are the alpha geeks of health care. When you follow the alpha geeks of any industry, you’re following the hackers. You’re following the people who are pushing on every tool, pushing at the edges of medicine…This way I can bring back reports from the future, so we can better think about where things are headed in terms of health and technology. That’s our shared mission. That’s what you do here at NIH, push at the edges of medicine and science in treatment and in the labs and in the research you do.”

The summit brought “together communicators, patients, researchers and health professionals from inside and outside government to talk about the most effective ways to communicate on digital platforms,” said John Burklow, NIH associate director for communications and public liaison, opening the event. Two keynote lectures, 4 panels, an exhibit/demo area and several topic tables comprised the day-long summit. More than 1,400 people registered to attend the event, either in Masur Auditorium or online. A screen featuring a real-time Twitter feed using #NIHDigital kept in-person and online attendees engaged in the conversation.

Setting the day’s agenda, Fox wondered aloud, “How might we connect the edges of science to the majority? How might we use digital tools to engage and educate individuals?”

She talked about what she considered the two major eras of Internet connection so far: “The first—connecting documents—was dominated by Google,” she said. The second—“connecting people—is dominated by Facebook. What I think is next is unleashing empathy.”

Fox recalled that in 1996, when the Pew Research Center began tracking Internet usage, 14 percent of U.S. adults had Internet access; today it’s 9 in 10 U.S. adults. It’s important, she pointed out, for us to “remove false boundaries between discovery and practice.”

Tapping into digital delivery of information can help with that.

ABC News chief health and medical editor Dr. Richard Besser gives the summit’s afternoon keynote talk.
ABC News chief health and medical editor Dr. Richard Besser gives the summit’s afternoon keynote talk.

“The Internet has allowed us to crack open the funnel of information previously available only to experts,” she said. But, we can do even better. What if our electronic medical records data were more portable? What if we had full and open access to all medical journals? What if we had true “nothing about me, without me” access to data?

In addition, Fox said, the desktop and landline eras are coming to a close. “We should expect the majority of households to be mobile-only in 5 years,” she predicted.

As for the current social media revolution, Fox said 6 in 10 adults use social networking, and the trend is gaining strength.

“People turn first to a clinician for diagnosis and treatment,” Fox said. “But just as quickly they turn to friends and family, and they turn to patients like themselves—people who share their same condition—to get practical tips.”

The first two panels of the day addressed this phenomenon. In “Patient and Caregiver Perspective: Managing Health Conditions Using Digital Tools and Social Media,” three people affected by rare or chronic ailments discussed online tools and practices that work for them.

Guy Anthony, HIV/AIDS activist and author, coined the acronym “FIT”—for Facebook, Instagram and Twitter—to describe the main digital apps he uses to stay connected both to his personal health care providers and to the community of fellow health advocates, community leaders and patients who follow him. “FIT” became a buzzword at the summit.

“I think open communication is huge when it comes to doctors and us,” said Rebecca Spencer White, whose young son has Niemann-Pick Type C, a rare neurological disease. Their family learned about NIH through social media, which continues to play an essential role in how they live with the disorder. “We have amazing doctors here at NIH,” she said, “and they read our Facebook and they read our blogs. They can find out things that I forgot to tell them.”

Guy Anthony, Rebecca Spencer White Dr. John Didion
From patients and advocates to tech experts, professional communicators and scientists, a variety of panelists including (above, from l) Guy Anthony, Rebecca Spencer White and Dr. John Didion contribute to the day’s discussion.

PHOTOS: BILL BRANSON

As for anticipating the next cutting-edge tool, Fox said she’s considering virtual reality. By donning VR headsets, users can explore the environment and experiences of other people, without travel. “It is a tool for empathy,” she concluded. “How might we use this new way of understanding someone’s real lived experience? What if we could create a virtual reality experience where scientists and researchers understood really what it is to live with a condition?”

Fox also encouraged summit participants to see the full potential of interacting online. “How might we use social media to open even more doors and windows into our work, to inspire new generations of scientists who ask new questions and discover new pathways?” she asked.

The summit’s afternoon sessions tackled digital communication from the science and medical professional point of view.

Keynote speaker Dr. Richard Besser, chief health and medical editor at ABC News and former acting CDC director, described using social media both to explore general health topics daily and to report news. Showing slides and video, he talked about “Reaching People Where They Are: Using Social Media to Promote Health” and interacting in real time with the public.

“I think social media is critically important if we want to reach our audience and get our health messages to people and hopefully have a positive impact on their lives,” he said. “I use social media every day. I share my perspectives on the news…I use Twitter and Facebook a lot to solicit viewer questions. It really helps in terms of connecting with an audience when they feel they are a part of the show, when they tweet us a question.”

One of Besser’s favorite things at ABC News is the weekly Twitter Chat he has conducted since 2011.

In the morning keynote, Fox suggests virtual reality technology could allow scientists to experience a disorder from the patient’s perspective. Scott Prince of NIH’s Office of Communications and Public Liaison, which hosted the summit, encourages discussion beyond the event’s time limitations.
In the morning keynote, Fox suggests virtual reality technology could allow scientists to experience a disorder from the patient’s perspective. Scott Prince of NIH’s Office of Communications and Public Liaison, which hosted the summit, encourages discussion beyond the event’s time limitations.

“What I love about it is the direct contact with some of our audience,” he noted. “I love engaging with experts from around the country. But I also love that I can do any topic I want.” Unlike a network news broadcast in which stories must be pitched for approval to executive producers/decision-makers, a Twitter Chat topic doesn’t have to win anyone else’s enthusiasm beyond Besser’s.

He discussed the immediacy of posting to Facebook and not having to wait for a news broadcast to report on Ebola in Africa last year.

“By using social media to report the news, it helps us connect with a much younger audience and it helps people connect with me as a trusted news source.”

Besser’s talk gave a broad overview for the panels that followed. Discussions focused on specific devices, applications and practices that communicators are using to connect with people digitally—from interactive tracking tools that allow health professionals to draw behavioral data directly from users remotely to interagency collaboration on emergency preparation.

In a presentation by Dr. John Didion of NHGRI’s Collins Lab, for example, the traditional pen & paper “laboratory notebook” evolved to a digital format using “SmartPen” technology. Didion shared findings from a 3-month study that included NIH researchers and showed how smartpens potentially could change the way scientists solve problems, record their research and share data.

“We really hope to continue this conversation,” concluded Scott Prince, chief of the Online Information Branch in NIH’s Office of Communications and Public Liaison, which hosted the summit. “Continue to use the hashtag ‘NIHDigital.’ We want to hear about the ways you’re going to integrate some of the things you’ve learned about today.”

View the entire day’s event at http://1.usa.gov/1GyK1Sn.

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