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Vol. LXIV, No. 4
February 17, 2012

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New Tools, New Rules
NIH Releases Social & New Media Policy

On the front page...

Let’s face it. To get your message across these days, you most likely have to blog it, tweet it or post it on Facebook. In other words, you have to employ some form of social media. As use of such networks (also called “new media”) has become more widespread in pop culture over the last decade, it’s also presented tantalizing new ways for the medical research community to connect with more people. Naturally, along with any new tools come new responsibilities and rules for users. Enter the recently released “NIH Social and New Media Policy” (also known affectionately as “Manual Issuance 2809”).

“These days of new media are very much like the first days of the Internet,” said John Burklow, NIH associate director for communications and public liaison. “We see social media as valuable—and powerful—new resources for communicating and engaging audiences. We want to harness that power in thoughtful ways.”

Communication with Consideration

More than 2 years in the making, the social media policy was published Nov. 4. Led by the Office of Communications and Public Liaison, two other Office of the Director components—the Office of the Chief Information Officer and the Office of Management Assessment—worked together to develop the guidance. Their challenge? How to use the new technologies to relay science and health messages effectively while also protecting the privacy of our partners in research—patients, the public, and NIH’s reputation and electronic resources.


Representatives from several other NIH components— including institute and center communication directors, IC information systems security officers, various intramural research programs and institutional review boards, patient recruitment, the Office of General Counsel—also contributed ideas or helped fine-tune the policy.

“Social media offers new and different ways to communicate and interact with individuals and the research community,” said NIH acting CIO Andrea Norris, NIH’s new director of the Center for Information Technology. “NIH engaged extensively in discussions and forums with staff to make sure the new policy addressed issues or concerns related to social media. While this took some time, it resulted in a more effective policy.”

Communicating in real time with instant feedback via some kind of handheld device is the new reality.
Communicating in real time with instant feedback via some kind of handheld device is the new reality.

Each IC is developing its own plan to implement the policy—all in strict accordance with the issuance. “Everyone is following the same set of rules, but small things are being tailored by specific ICs for their needs,” explained Dr. Marin Allen, OCPL deputy director, who chaired the policy-writing committee. In a memo to executive officers, OCIO released use of social media on Feb. 7.

Look Before Leaping

But wait. Before you jump fingertips first into the fray, there are things you need to know (see sidebar “Getting Sociable at NIH”). If you plan to use new media while at NIH, you should read NIH’s rules of engagement at

No matter how long you’ve been personally using such sites as Twitter, LinkedIn and YouTube, new issues crop up if you intend to post while working at NIH. “NIH has unique needs, including participant recruitment and privacy requirements,” Burklow noted. “Standards are key to appropriate use of social media, as with any communication tool.” Primarily, developers of the new policy advise, keep a good bit of professional distance between “home you” and “work you.” Also, remember that one of the great advantages of many new media outlets—real-time dialogue with the public—can be a double-edged sword.

The NIH Office of Science Education uses Twitter.

NIH has launched a Facebook presence.
The NIH Office of Science Education uses Twitter. NIH has launched a Facebook presence.

NIH deputy director for extramural research Dr. Sally Rockey maintains a blog called “Rock Talk.”
NIH deputy director for extramural research Dr. Sally Rockey maintains a blog called “Rock Talk.”
“With sites like Facebook, for instance, people can and do respond back 24 hours a day,” pointed out Dr. Barbara Karp, chair of the combined NeuroScience institutional review board. Before there was a new media policy, investigators she works with asked to use such sites for research subject recruitment, which is a regulated activity.

Common Sense, Standard Rules Apply’

“We had concerns about privacy and confidentiality,” she said. “For example, Facebook users often tend to provide personal, private information when posting a comment on an institution’s web site, not realizing or perhaps not caring that their information could be viewed by the public. We don’t monitor our postings and web sites in real time, and we worry about our ability to respond or take down private information in a timely way.”

Also, Karp explained, investigators must be careful about what is posted and understand that information posted on an NIH page represents the agency.

“Not everyone who works for NIH is authorized to speak on behalf of NIH,” said OMA’s Karen Plá, NIH senior official for privacy, who helped draft the manual chapter.

Finally, don’t let the new policy or a few helpful tips stop you from exploring these new opportunities to engage the public. Social sites can yield valuable insights and collaborations (see sidebar “Do Social Media Have Any Impact?”).

“We are well-positioned to deal with the opportunities and challenges of social media,” Norris assured. “These are great technologies for engaging the public and interacting with colleagues. But, as with any technology, common sense and standard rules and guidance still apply. Be cautious of any message, post or link that looks suspicious. If it looks suspicious, it usually is.”

‘No Place Like Home’
Getting Sociable at NIH

Dorothy’s mantra that “there’s no place like home” turns out to be a handy motto for using social media at NIH. No matter how long you’ve been blogging and tweeting, if you intend to post as an employee, you should take Manual Issuance 2809, NIH Social and New Media Policy, to heart.

“I hope before they get started that employees who want to use social media will read the whole policy, of course, and especially the checklist in the appendix,” notes Karen Plá, NIH senior official for privacy, who served on the committee that wrote the guidance.

She says there are a couple of things employees need to keep in mind when using, for instance, Tumblr, MySpace or Twitter:

  • “The opportunity to communicate in real time also presents a number of risks,” Plá explains. Obviously, NIH’ers will not be required to monitor a Facebook page 24/7, for example, but employees should realize that the public might post on an NIH site at any time. “These sites collect a lot of information, feedback and input.”
  • “The majority of social media sites are owned by third parties, not by the federal government,” she says. “That means we have no control or say over how they manage or use or store the information we post.” Of course NIH can make suggestions and offer guidelines for using the information we provide, but networks are under no obligation to incorporate input from us.
  • As Dr. Barbara Karp, chair of the combined NeuroScience institutional review board, notes, interactive sites such as Survey

    Monkey keep access to and analyze user data. “That includes IP addresses of people who respond to your questionnaires,” she says. “At this time, it is not clear that we should be allowing third party access to our data, so we don’t allow use of this particular site for research studies that we review.”

    Give some thought to what you want to accomplish with social media, devise a strategy and consider its possible results, advises Karp.

    “These can be very helpful tools,” she concludes. “We just need to think very carefully about how we use them. It’s a brave new world. Be careful.” Find NIH’s new media policy in full at


    Much Ado About…Anything?
    Do Social Media Have Any Impact? One Group Offers Answers

    Real-time response. Instant feedback. Inexpensive communication with a wide audience. The purported benefits of new social media technology are becoming legendary. But are these new networks generating measurable audiences? Is new media any better at engaging the public than, say, such traditional forms of communicating as newspaper and journal ads?

    We asked Dinora Dominguez of the Clinical Center’s Office of Communications, Patient Recruitment & Public Liaison, which opened a Twitter account in February 2009 and created a Facebook page later that year. Last August, the group launched a YouTube channel.

    The NIH Clinical Center

    Potential research volunteers are an important audience for the Clinical Center, but, Dominguez points out, “our social media address more than recruitment.” Does the recruitment team use new media differently than they use more traditional communication channels?

    “It can be difficult to compare [media] since these tactics have different goals,” she says. “The newspaper is a very direct call to action, urging the reader to contact us for this particular study. Our social media messages are of an educational tone and have a ‘soft’ call to action, providing the reader with more info. Tracking responses from a newspaper ad that might have a unique phone number is more measurable, in terms of cause and effect. However, the Facebook posts regarding patient recruitment studies are some of the most ‘shared’ posts. What that tells us is that the content is valuable to our audience, so this is important to us too.”

    Which technology gets the most response?

    “This is an interesting question because our most ‘popular’ tool is not necessarily the one that fosters the most engagement,” she notes. “Our most ‘popular’ platform is Twitter, with 18,000 followers. However, in terms of engagement, we have a smaller subset of just less than 2,000 people who regularly interact with our content on Facebook. We think this says a lot about the trend of the tools and how people use them. People use Twitter for a news feed; people use Facebook for engagement.”

    What have you learned about the people who respond to your messages via social media?

    “Our analytics show that we have a total of about 20,000 connections—followers, friends, etc.,” Dominguez concludes. “Of those who disclose their age and sex, the average is 38 years old and it is a fairly even split of men and women.” Check out the Clinical Center’s Facebook page,

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