The following is a guest post by Christie Moffatt, Manager, Digital Manuscripts Program, History of Medicine Division, National Library of Medicine
In this installment of the “Content Matters” series of the National Digital Stewardship Alliance Content Working Group, I interview Dr. Sylvia Chou, PhD, MPH, Program Director of the National Cancer Institute’s Health Communication and Informatics Research Branch. Sylvia recently spoke at the National Library of Medicine on “Health Communication in the Digital World: Innovation and the Role of Social Media,” sharing some of her research on health-related uses of social media. In this interview, I asked Sylvia to describe a bit more about her research and her perspective on the value of preserving Web 2.0 communications (as well as scientific communications about those communications) over time.
Christie: Could you share a bit about your interest in social media and health? What is the focus of your current research?
Sylvia: I came to the National Cancer Institute as a Cancer Prevention Fellow interested in how people communicate about health and the impact of communication on attitudes, perceptions, and behavior related to health. One of my first publications, “Social Media Use in the United States: Implications for Health Communication,” based on data from the Health Information National Trends Survey (HINTS), received attention, particularly on the digital divide and how public health and clinical researchers may leverage Web 2.0 communication in their work.
As I engaged in analyzing national surveys on this topic, I also engaged in qualitative research on social media in an effort to begin understanding motivations and the nature of use. As an example, I began studying cancer survivors’ narratives posted on YouTube to better understand how and why people are sharing personal stories through what’s later termed “user-generated content,” characteristic of social media. Subsequently, in a literature review, we saw the abundance of commentaries about social media, but generally not as much empirical work to-date testing the utility of social media for health promotion. We felt that the time was ripe for more rigorous research on the topic.
Christie: What have you been able to learn through this research about the users of social media for health communication? How are people using social media to communicate about health?
Sylvia: We’ve learned that social media reactions (to health messages, including health campaigns and advertisements) are proving to be an authentic representation of the way people feel about them and can serve as interesting “data” for social scientists. Also (and related), that active users of social media have different levels of self-disclosure. In some social media venues (e.g. Facebook), people seem to post everyday thoughts and observations, with little editing or shielding of privacy.
We’ve also learned more about the influence of user-generated health content, and its potential for the dissemination of public health information. For example, there are many YouTube videos or blog posts of people sharing personal stories about a specific health care procedure, like colonoscopy, where they report that “it wasn’t so bad” or “it saved my life.” These narratives can be more persuasive than traditional public health guidelines or communication efforts. Stories like these are not coached and not perfect, but perhaps their authenticity makes them more effective in health promotion efforts. On the other hand, the use of personal narratives in social media can potentially have negative health impact. Individuals’ experiences are not necessarily evidence-based and can contain health myths, which can potentially be spread quickly on social networks.
Christie: Where do you expect this research will make its greatest impact?
Sylvia: Empirical research on social media will be helpful to those developing strategies for health campaigns. This research may also be helpful to clinicians, as they become more aware of the impact of social media conversations (e.g. negative stereotype of individuals suffering from health issues) when helping patients. For instance, in our project examining social media discourse about obesity, we found rampant weight stigmatization against individuals struggling with weight issues. Documentation of such online behavior can help clinicians and public health practitioners better understand the experiences of their clients and the barriers they face to improving their health.
Christie: What is your approach to finding and analyzing social media for use in your research? What types of communications are you studying?
Sylvia: We have used commercial data mining companies often for more commercial/marketing purposes, but we can do keyword searches on blogs, forums, YouTube, Facebook, and Twitter. My colleagues and other investigators have relied on Internet panels (e.g. focus groups and survey questionnaires), and data from Google and Twitter that they make available to researchers.
Christie: How do you gather and collect the data for your research? Do you keep an archive of this data for other researchers?
Sylvia: We have stored data in the cloud (such as an Amazon server or Dropbox). Increasingly we are seeing large data stored in such ways. My qualitative research (e.g. on YouTube posts) are smaller in scope and so the data are a bit easier to store. We save the URL link and the video content is transcribed. We also use low-tech screen captures.
Christie: Have you considered working with data in web archives?
Sylvia: I would love to work with web data in an archive. A main concern would be about selection bias. When I gather my own data I know my own selection criteria. A web archive would need to be clear on how content was selected for inclusion. It is also important to be able to date/time-stamp captured content, to be able to say “as of this date this is what the content was.”
Christie: What are your observations on how the communication of research findings has changed with Web 2.0 technologies? Do you have a blog or online notebook?
Sylvia: Many individuals and agencies feel a pressure to host a blog and Tweet (we see the example of this from our own NIH Director Francis Collins), but I have not done so yet and continue to publish my research through the formal peer review process. At the end of the day, having my publication in PubMed provides credibility and a searchable presence. As a scientist, peer review justifies what I do. I have been thinking, though, of becoming a little more active on Twitter, as oftentimes I have to rely on my colleagues (particularly postdocs) to notify me of relevant Tweets regarding my presentations/research, and I probably should start becoming more engaged on these channels.
Christie: How can the digital preservation community reach out to researchers on issues of digital preservation?
Sylvia: The digital preservation community could aim for what is equally important, but not captured in the traditional scientific publishing. Some academics, for example, may be substituting traditional publishing venues with engagement on blogs, and such work is not reflected in the scientific databases.
Perhaps institutions could partner with researchers to develop preservation strategies to support research questions (i.e. preserve the specific social media or other digital content used in research) and manage that data a scientific space.
Christie: One of the struggles the digital preservation community faces is the fact that not everything can (or should) be preserved. What is your perspective on the most valuable content to preserve in support of your own research?
Sylvia: The digital preservation community should play a role in selectively preserving/documenting the diachronic evolution of material, content and ways of sharing value, with an aim to filter out some of the noise.
On the other hand, I can see that with more content that is captured, more research can be done. Some kind of sampling of social media could be done, but the process for doing so would need to be well-framed. The amount selected would depend on the level of resources available.
From a social science or epidemiological perspective, there are some interesting research questions about the history of health and health communication. An archive of health-related social media communications could serve as a rich resource for studying how people talk about health and science in a given time or place, and how these types of communications are changing over time. We can study shifts in the way that information is communicated.
What kind of content matters to you? This is but one case for preserving valuable content for long-term access. If you or your institution would like to share your own story of use and long term value of access to a particular type of born-digital resources, please send us a note at [email protected] and in the subject line mark it to the attention of the Content Working Group. We would love to hear from you!