Misconceptions about Disinformation and Manipulation Online

Good food for thought by Kate Starboard who explores misconceptions around disinformation online and “coordinated inauthentic behavior” with a focus on polictics. This is highly relevant to clinical research, disease prevention, and healthcare as well. Some of the key takeaways:

• Those behind disinformation campaigns purposely entangle orchestrated action with organic activity.
• Disinformation campaigns promoting multiple, often conflicting, views.
• Disinformation is not simply false information, it often layers true information with false.
• Disinformation stems mainly from agents producing false content (paid ‘trolls’) and automated accounts (‘bots’) that promote it. Members of the audience become willing but unwitting collaborators who are unaware of their role, but who amplify and embellish messages.
• The message of a campaign is the same as its goals.
• Disinformation targets only the unsavvy or uneducated, that it works only on ‘others’. Disinformation often specifically uses the rhetoric and techniques of critical thinking to foster nihilistic scepticism.

• Kate concludes that “as researchers and policymakers, we have to go beyond trying to measure the impact of individual disinformation campaigns using simple models of inputs (for example, messages posted by bots or trolls) and outputs (such as likes, retweets or even votes). We need models that can encompass how disinformation changes hearts, minds, networks and actions.”

Keep reading

Social Media and Opportunities for Research, Education, and Healthcare

I recently was invited to write a review for Current Opinion in Rheumatology to summarize current trends in using social media for research, education, and healthcare. The review highlights four areas in the biomedical field that social media has infused with new ideas:

1. The use of patient-generated health data (PGHD) from social media to learn about their disease experience and networks that are not otherwise easily captured through traditional surveys or administrative data.
2. The use of social media for delivering health awareness and education campaigns, as well as health interventions to both, reach large and hard-to-reach segments of the population
3. Social media for enhancing research participant recruitment.
4. New training approaches for physicians and trainees in the digital age.

As I worked on the project, I also noticed the convergence of social media and biomedical publications since 2007, when the first peer-reviewed biomedical articles related to ‘social media’ emerged (Fig. 1).

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Evaluating Patients’ Perspectives on Social Media

While much of the chatter on social media might seem superficial, it also includes word-of-mouth advice passed along from patient to patient and a narrative about their disease experience. A growing number of research studies uses social media to learn about patient’s views, health outcomes, and clinical research experiences.

The recent report by Menzies and colleagues in the British Journal of Dermatology is an excellent example of that but it also highligts a critial issue. The authors described commonly discussed and personal patient experiences of psoriasis treatment on the social network Twitter. While they cogently describe their findings, there were a few points in methodology which should be included in this type of social media research.

First, it is unclear how the authors reliably identified tweets from patients. Social media is a pool for commercial and bot-like content. Bots (“robots”) are purely automated accounts or human-assisted automated accounts (“cyborgs”). The authors did not discuss whether and how they controlled for bias in their analysis introduced by tweets from commercial groups and bots.

Similarly, it is unclear if the dataset included retweets or only original tweets, which is important because many tweets by Twitter users are retweets or replies to commercial tweets, of which bots generate a large number.  

In an ongoing study, we found that 75.51% (52301/69264) of psoriasis tweets in English sent between February 2016 and October 2018 by users in the U.S. were of commercial or bot-like nature. Similar results have been reported for Twitter messages about e-cigarettes⁴. Using standards for social media data research is critical as well as clearly reporting the data collection and quality assessment. Tools such as “Bot or Not?” help with identifying commercial and bot-like content, in this case, to discern patients’ perspectives.

Link to peer-reviewed article

Webinar: Social Media and the 21st-Century Scholar: How Researchers Can Harness Social Media to Amplify Their Career

Improving health care requires better dissemination of research discoveries to reach practitioners, patients, and the public. Teresa M. Chan, MD, MHPE, from the McMaster University in Ontario, Canada shares some advice and great examples. She argues that it is “incumbent on scientists and scholars to use every tool in their armamentarium, including social media, to reach their intended audiences.” You can access all resources on the Digital Scholar Program page.

View the webinar here…

Join the Upcoming Digital Scholar Webinar Series

Nearly every part of the research process can benefit from digital advances. This webinar training series introduces health researchers to digital approaches and tools relevant to their research.  We will cover a wide range of topics, such as recruiting study participants online, using digital tools to improve a systematic review study, accelerating the dissemination of research results, and launching a crowdfunding campaign. The series is designed to address a gap in the current training of health sciences researchers and to increase the number of scientists at all career stages who are comfortable enhancing their research workflows with new digital approaches — to be more effective and efficient.

The webinars will be open to all and free of charge. All webinars will be accessible afterward on the Digital Scholar Program page.

Upcoming webinar topics in 2017

Sep 6, 2017/12-1PM PST
Topic: Recruiting study participants online using Amazon’s Mechanical Turk
Speaker: Jesse Chandler, PhD, a survey researcher at Mathematica Policy Research and an Adjunct Faculty Associate at the Institute for Social Research at the University of Michigan
Register here

Oct 4, 2017/12-1PM PST
Topic: Disseminating scientific papers via Twitter: Practical insights and research evidence
Speaker: Stefanie Haustein, PhD, Assistant Professor, School of Information Studies, University of Ottawa
Register here

Nov 1, 2017/12-1PM PST
Topic: Using the research platform TurkPrime to crowdsource data for the health sciences
Speaker: Leib Litman, PhD, Lander College, Associate Professor of Psychology; TurkPrime, Director of Research
Register here

Dec 6, 2017/12-1PM PST
Topic: Accelerating systematic review studies using the online tool Covidence
Speaker: Anneliese Arno, community manager at Covidence
Register here

Read the original news announcement and sign up for future training opportunities

What We’ve Learned About Automating the Promotion of Clinical Trials On Social Media (Part 1)

For a while, I have been thinking about ways to help research teams to better promote their clinical trials. Social media provide a great opportunity to do so. But doing it right requires time and resources. Together with a team of collaborators, we’ve asked the question whether we could automate part of the process. The result is Trial Promoter, a free, Web-based tool that automates the generation and distribution of user-friendly social media messages about research. We’re excited to share the tool with you today. Check out http://trialpromoter.org. The software code is free and accessible to technical and non-technical audiences so you can run your own experiments. We would love to hear your suggestions for future extensions to the tool.

TrialPromoter.org website

If you like to know more about our first experiment using Trial Promoter, take a look at this peer-reviewed paper in the Journal of Medical Internet Research.

We still have a lot to learn and many experiments to run. Stay tuned for more, for example, a Trial Promoter study on how well automated clinical trial messages help to recruit potential study participants through social media, and a health promotion study about the effectiveness of anti-tobacco messages – distributed on social medial and analyzed by Trial Promoter.

 

How Social Media is Changing the Life of Patients and How it Could Help Research As Well

I recently had an interesting conversation with Wendy Lee (@thewendylee) from the SF Chronicle about patients with rare diseases connecting over social media, in particular Facebook. In her article “Facebook is a friend to those suffering rare maladies“, Wendy Lee explores the new role Facebook plays in helping patients with rare diseases tackle challenges such as isolation, finding and connecting with other patients, and learning more about their disease.

The article also mentions important emerging questions around patient privacy and the challenges for the pharmaceutical industry and researchers that need to navigate FDA and IRB (Institutional Review Board) regulations and reviews when interacting with patients on Facebook and other social media platforms.

The problem is that clinical research is very regulated, for good reasons. It does not lend itself well to the extremely dynamic and conversational nature of social media. Akin to more traditional research outreach materials, review is required for any advertising that is intended to be seen or heard by prospective research participants. In the context of Facebook, this means that researchers need to get approval for every Facebook post (see also FDA draft guidances, Jan 2015).

But the article also shares this heartening example of a research team that was able to boost its research participant recruitment efforts using Facebook:

Dr. Irene Ghobrial of the Dana-Farber Cancer Institute in Boston has recruited 200 patients, including those with an early precursor to multiple myeloma, to participate in a clinical trial after mentioning the test on Twitter and Facebook.

“Patients are very interested to know what’s going on, and this should be one of the ways we should communicate with our patients,” said Ghobrial. She hopes to soon expand the trial to 10,000 patients.

In the same spirit, a study team at Mayo Clinic published an interesting patient-initiated research approach through social media (view video below). Here, patients became the drivers. They contacted the researchers to encourage them to study their disease and potential treatment options. Within one week, the research team at Mayo Clinic had recruited 12 study participants for a spontaneous coronary artery dissection (SCAD) pilot study.

Facebook CEO Mark Zuckerberg believes that his social network and its groups could help solve the clinical-trial problem, according to Wendy Lee. (Note: Nearly 80% of clinical trials fail because the research teams cannot recruit the required number of participants.)

“In a Q&A in Menlo Park this month, he talked about Facebook groups for rare diseases establishing guidelines that state, “If a company designs a drug, everyone who is part of this group is signed up to be a part of the trial,” he said.

This is both an interesting and challenging development. If IRBs and the FDA find ways to adjust their traditional regulatory frameworks to accommodate the difference between social media and traditional forms of participant recruitment while protecting patient privacy, the research community may have a chance to address the clinical research recruitment challenge using social media and to bring research into the digital and social media age. Examples include the difficulty of conversing in a manner social media users expect; more flexible regulatory approval processes; guidelines for how information from social media can be gathered, retained, and stored; access or privacy settings of social media pages; and the use of pre-screening forms.

The bottom line is that researchers and companies need to engage with their audiences on their terms.

Great Example: Digital Campaign Creates Major Support for Research Project

Getting attention on digital and social media is one of the major challenges researchers face when using alternative forms of scientific communication. This heartening example, however, shows that major success on digital platforms is possible.

Initially, this soil sampling research project tailored to citizen scientists drew only moderate interest since it began in 2010, wrote Emily Conover in her news piece on ScienceInsider.  But then “a reddit user posted a link to the website of the Citizen Science Soil Collection Program, run by the Natural Products Discovery Group at the University of Oklahoma.” As a result, the research group “has received more than 4000 requests for soil collection kits—a huge boost from the 500 samples they collected over the past year.”

“It’s just incredible; this is exactly what we were hoping for. I wish I could say we were the architects of it, but it just happened, and it’s awesome,” says chemist Robert Cichewicz, lead scientist for the project. “The engagement of people and the general public into the scientific process can just redefine an entire lab’s research in a matter of days,” Cichewicz says. “I’m just giddy.”

Useful Social Media Overview Map

Here is a good resource for everyone who wants to get an overview of the current (2014) online and social media landscape.  A few critical platforms and tools that are used by scientists are missing (e.g., ResearchGate, Figshare). But nonetheless it is a useful reference guide for thinking through web-based communication strategies. View the original map, by Overdrive Interactive 

 

Launching New Digital Scholar Training Initiative

Let me begin by saying that this is an experiment:  Together with colleagues at the University of Southern California and our external partners at Experiment and at Symplur, we are inaugurating a Digital Scholar Training Initiative to help researchers better utilize the Web in support of their research.

For our pilot workshop series, we will focus on four topics:

1. Becoming a successful digital scholar – What does it take?
2. Crowdfunding: Secure alternative seed funding (in collaboration with our partners at Experiment)
3. Increasing the reach and impact of  research
4. Using digital and social media data for research (in collaboration with Symplur)

Watch the video introduction

I am very interested to learn how researchers will respond to and use the new knowledge and how we can better support them in doing so as we move forward. It may take some time before we establish a more standardized training approach to Digital Scholarship. With this and future series, we hope to contribute to the encouraging examples that are already out there. Read the full news article

Share your thoughts with us if you’re thinking about how to best teach Digtal Scholarship skills or have ideas on how to better support Digital Scholars.

Follow us on Twitter #DigiScholar14

To be continued…