Explaining neuroscience in ongoing Instagram video series: A Q&A

At the beginning of the year, Stanford neuroscientist Andrew Huberman, PhD, pledged to post on Instagram one-minute educational videos about neuroscience for an entire year. Since a third of his regular followers come from Spanish-speaking countries, he posts them in both English and Spanish. We spoke soon after he launched the project. And now that half the year is over, I checked in with him about his New Year’s resolution.

How is your Instagram project going?

“It’s going great. I haven’t kept up with the frequency of posts that I initially set out to do, but it’s been relatively steady. The account has grown to about 13,500 followers and there is a lot of engagement. They ask great questions and the vast majority of comments indicate to me that people understand and appreciate the content. I’m really grateful for my followers. Everyone’s time is valuable and the fact that they comment and seem to enjoy the content is gratifying.”

What have you learned?

“The feedback informed me that 60 seconds of information is a lot for some people, especially if the topic requires new terms. That was surprising. So I have opted to do shorter 45-second videos and those get double or more views and reposts. I also have started posting images and videos of brains and such with ‘voice over’ content. It’s more work to produce, but people seem to like that more than the ‘professor talking’ videos.

I still get the ‘you need to blink more!’ comments, but fortunately that has tapered off. My Spanish is also getting better but I’m still not fluent. Neural plasticity takes time but I’ll get there.”

What is your favorite video so far?

“People naturally like the videos that provide something actionable for their health and well-being. The brief series on light and circadian rhythms was especially popular, as well as the one on how looking at the blue light from your cell phone in the middle of the night can potentially alter sleep and mood. I particularly enjoyed making that post since it combined vision science and mental health, which is one of my lab’s main focuses.”

What are you planning for the rest of the year?

“I’m kicking off some longer content through the Instagram TV format, which will allow people who want more in-depth information to get that. I’m also helping The Society for Neuroscience get their message out about their annual meeting. Other than that, I’m just going to keep grinding away at delivering what I think is interesting neuroscience to people that would otherwise not hear about it.”

Is it fun or an obligation at this point?

“There are days where other things take priority of course — research, teaching and caring for my bulldog Costello — but I have to do it anyway since I promised I’d post. However, it’s always fun once I get started. If only I could get Costello to fill in for me when I get busy…”

This is a reposting of my Scope story, courtesy of Stanford School of Medicine.

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Tips for discussing suicide on social media — A guide for youth

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Photo by kaboompics

There are pros and cons to social media discussions of suicide. Social media can spread helpful knowledge and support, but it can also quickly disseminate harmful messaging and misinformation that puts vulnerable youth at risk.

New U.S. guidelines, called #chatsafe: A Young Person’s Guide for Communicating Safely Online About Suicides, aim to address this problem by offering evidence-based advice on how to constructively interact online about this difficult topic. The guidelines include specific language recommendations.

Vicki Harrison, MSW, the program director for the Stanford Center for Youth Mental Health and Wellbeing, discussed this new online education tool — developed in collaboration with a youth advisory panel — in a recent Healthier, Happy Lives Blog post.

“My hope is that these guidelines will create awareness about the fact that the way people talk about suicide actually matters an awful lot and doing so safely can potentially save lives. Yet we haven’t, up to this point, offered young people a lot of guidance for how to engage in constructive interactions about this difficult topic,” Harrison said in the blog post. “Hopefully, these guidelines will demystify the issue somewhat and offer practical suggestions that youth can easily apply in their daily interactions.”

A few main takeaways from the guidelines are below:

Before you post anything online about suicide

Remember that posts can go viral and they will never be completely erased. If you do post about suicide, carefully choose the language you use. For example, avoid words that describe suicide as criminal, sinful, selfish, brave, romantic or a solution to problems.

Also, monitor the comments for unsafe content like bullying, images or graphic descriptions of suicide methods, suicide pacts or goodbye notes. And include a link to prevention resources, like suicide help centers on social media platforms. From the guidelines:

“Indicate suicide is preventable, help is available, treatment can be successful, and that recovery is possible.”

Sharing your own thoughts, feelings or experience with suicidal behavior online

If you’re experiencing suicidal thoughts or feelings, try to reach out to a trusted adult, friend or professional mental health service before posting online. If you are feeling unsafe, call 911.

In general, think before you post: What do you hope to achieve by sharing your experience? How will sharing make you feel? Who will see your post and how will it affect them?

If you do post, share your experience in a safe and helpful way without graphic references, and consider including a trigger warning at the beginning to warn readers about potentially upsetting content.

Communicating about someone you know who is affected by suicidal thoughts, feelings or behaviors

If you’re concerned about someone, ask permission before posting or sharing content about them if possible. If someone you know has died by suicide, be sensitive to the feelings of their grieving family members and friends who might see your post. Also, avoid posting or sharing posts about celebrity suicides, because too much exposure to the suicide of well-known public figures can lead to copycat suicides.

Responding to someone who may be suicidal

Before you respond to someone who has indicated they may be at risk of suicide, check in with yourself: How are you feeling? Do you understand the role and limitations of the support you can provide?

If you do respond, always respond in private without judgement, assumptions or interruptions. Ask them directly if they are thinking of suicide. Acknowledge their feelings and let them know exactly why you are worried about them. Show that you care. And encourage them to seek professional help.

Memorial websites, pages and closed groups to honor the deceased

Setting up a page or group to remember someone who has died can be a good way to share stories and support, but it also raises concerns about copycat suicides. So make sure the memorial page or group is safe for others — by monitoring comments for harmful or unsafe content, quickly dealing with unsupportive comments and responding personally to participants in distress. Also outline the rules for participation.

Individuals in crisis can receive help from the Santa Clara County Suicide & Crisis Hotline at (855) 278-4204. Help is also available from anywhere in the United States via Crisis Text Line (text HOME to 741741) or the National Suicide Prevention Lifeline at (800) 273-8255. All three services are free, confidential and available 24 hours a day, seven days a week.

This is a resposting of my Scope blog story, courtesy of Stanford School of Medicine.

“The brain is just so amazing:” New Instagram video series explains neuroscience

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Photo by Photo by Norbert von der Groeben

Many people make New Year’s resolutions to exercise more or eat healthier. Not Stanford neurobiology professor Andrew Huberman, PhD. This year he set out to educate the public about exciting discoveries in neuroscience using Instagram.

Huberman’s sights are high: he pledged to post on Instagram one-minute educational videos about neuroscience an average of five times per week for an entire year. I recently spoke with him to see how he’s doing on his resolution.

Why did you start the Instagram video series?

“Although I’m running a lab where we’re focused on making discoveries, I’ve also been communicating science to the general public for a while. I’ve found that there’s just immense interest in the brain — about diseases, what’s going on in neuroscience now, and how these discoveries might impact the audience. The brain is just so amazing, so the interest makes sense to me.

I don’t spend much time on social media, but Instagram seemed like an interesting venue for science communication because it’s mostly visual. My lab already had an Instagram account that we successfully used to recruit human subjects for our studies. So at the end of last year, I was talking with a friend about public service. I told him I was thinking about creating short, daily educational videos about neuroscience — a free, open resource that anyone can view and learn from. He and some other friends said they’d totally watch that. So I committed to it in a video post to 5000 people, and then there was no backing down.”

What topics do you cover?

“I cover a lot of topics. But I feel there are two neuroscience topics that will potentially impact the general public in many positive ways if they can understand the underlying biology: neuroplasticity — the brain’s ability to change— and stress regulation. My primary interest is in vision science, so I like to highlight how the visual system interacts with other systems.

I discuss the literature, dispel myths, touch on some of the interesting mysteries and describe some of the emerging tools and technologies. I talk a bit about my work but mostly about work from other labs. And I’m always careful not to promote any specific tools or practices.”

How popular are your videos?

 “We have grown to about 8,000 followers in the last six weeks and it’s getting more viewers worldwide. According to the stats from Instagram, about a third of my regular listeners are in Spanish-speaking countries. Some of these Spanish-speaking followers started requesting that I make the videos in Spanish so they could share them. Last week I started posting the videos in both English and Spanish and there’s been a great response. My Spanish is weak but it’s getting better, so I’m also out to prove neural plasticity is possible in adulthood. By the end of the year I plan to be fluent in Spanish.

I’ve also had requests to do it in French, German, Chinese and Dutch but I’m not planning to expand to additional languages yet. I think my pronunciation of those languages would be so bad that it would be painful for everybody.

Currently, my most popular video series is about the effects of light on wakefulness and sleep — such as how exposure to blue light from looking at your phone in the middle of the night might trigger a depression-like circuit. But my most popular videos include Julian, a high school kid that I mentor. People have started commenting #teamjulianscience, which is pretty amusing.”

What have you learned?

“It’s turned out to be a lot harder to explain things in 60 seconds than I initially thought. I have to really distill down ideas to their core elements. Many professors are notorious for going on and on about what they do, saying it in language that nobody can understand. My goal is to not be THAT professor.

I’ve also learned that I don’t blink. Sixty seconds goes by fast so I just dive in and rattle it off. After a couple of weeks, people started posting “you never blink!” — so now I insert blinks to get them to stop saying that.

I’ve also found the viewer comments and questions to be really interesting. They cue to me what the general public is confused about. But I’ve also found that many people have a really nuanced and deep curiosity about brain science. It’s been a real pleasure to see that.”

This is a reposting of my Scope blog story, courtesy of Stanford School of Medicine.

Learning from health-related social media posts: A Q&A

Image by Max Pixel

About 6,000 tweets are sent every second and they aren’t all about celebrities. Posts about health or illness can be tremendously valuable to health care professionals, allowing them to track trends, spot epidemics and assess the quality of services provided by health facilities, to name just a few uses.

But how can the researchers make sense of this flood of data? To find out, I spoke with Sidhartha Sinha, MD, an assistant professor of medicine at Stanford, who analyzes social media posts to better understand patient and societal perceptions.

What sparked your interest in online data?

“While there are certainly downsides with working with unstructured data from sources such as social media and online patient forums, there are also tremendous advantages, including the scope of patients we can ‘reach.’

For example, in our work analyzing data from an online patient forum for patients with inflammatory bowel disease, we are able to access tens of thousands of posts from patients with IBD. These patients are describing a variety of issues around their experience with the disease — such as their therapy side effects (some of which have not been seen before and may offer early insights), psychosocial issues with chronic disease, and opinions regarding treatments and interventions. By analyzing this data, we are in effect  ‘listening’ to these patients’ experiences and hopefully gaining insights to better treat the disease.”

I understand you’ve also used online data to better understand public sentiment — could you describe that?

“One of the most important things health care providers do is try to prevent disease.  And one of the best means to do this is through disease screening.  However, millions of people do not get age-appropriate screening for diseases such as breast cancer or colon cancer.  My group’s initial work targeted understanding the perceptions around cancer screening tools.  Understanding how people feel about these screening interventions — particularly on the scale we’re able to examine using social media — allows us to not only identify barriers, but also further ascertain methods that work.”

How did you do that?

“Tens of thousands of tweets mentioning screening tests are created weekly. And while there are clear limitations to the quality of data and its generalizability, the sheer volume of data that we can access is much larger than most other means such as conventional surveys, which carry their own significant limitations. So we developed and validated a machine learning algorithm to classify sentiment (positive, negative, or neutral) around mentions of three common cancer screening tools: colonoscopy, mammography and PAP smears.

We found more negative sentiment expressed for colonoscopy and more positive sentiment for mammography. For example, the words ‘fear’ and ‘pain’ were commonly associated with negative sentiment. We also found that posts that were negative in sentiment spread more rapidly through social media than positive posts.”

How are these findings being used?

“Knowing the types of postings that reach more users, and some of the common issues expressed in them, could certainly influence how professional societies develop outreach interventions to improve engagement with preventive health efforts.

Based on our initial findings, we are developing additional algorithms to hopefully butter understand patient and societal perceptions of disease. We are also now engaged with professional societies such as the Crohn’s and Colitis Foundation to provide organizations with improved methods to understand patient needs and promote health.”

This is a reposting of my Scope blog story, courtesy of Stanford School of Medicine.

Can social media shed light on cardiovascular disease? Possibly, Stanford journal editors write

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Illustration by Clker-Free-Vector-Images

Clearly social media is part of our every day lives, recording our personal communications in a way previously unimaginable.

Researchers are now analyzing this wealth of social media data to better understand what people think and say about their health. Recently, researchers at the University of Pennsylvania sifted through 10 billion English-language tweets to identify and study more than 550,000 US-based tweets related to cardiovascular disease, as reported in JAMA Cardiology.

The research team found that people who tweeted about five cardiovascular conditions — high blood pressure, heart attack, diabetes, heart failure and cardiac arrest — were more likely to be older and female compared to the general population of Twitter users. They also tweeted within minutes or hours in response to events, such as celebrity deaths or to mark World Diabetes Day. 

This study was discussed in the issue’s Editor’s Note by Stanford journal editors Mintu Turakhia, MD, an assistant professor of medicine, and Robert Harrington, MD, a professor and the chair of the Department of Medicine. In the editorial, they acknowledged that the Penn Twitter study was atypical research to include in JAMA Cardiology but noted that digital health is now a major priority for the journal. They explained:

“We accepted [the paper] because it highlights the potential for using these emerging data sources such as Twitter for cardiovascular research, in this case to evaluate public communication about cardiovascular medicine in a manner not previously possible on such a scale.”

Turakhia, the journal’s associate editor of digital health, elaborated in an email: “Twitter and other social media data allow us to examine daily interactions in a connected life in ways not possible before,” he said. “Previously, in order to gain insight on the public’s perception or interest in cardiovascular disease, we were limited to examine historical news and media archives or direct surveys.”

Although the editors believe that Twitter is a new and important research tool, they raised a few questions about future studies. They wrote in the editorial, “The use of Twitter and other social media platforms for cardiovascular research is in an early, proof-of-concept stage. Many important questions remain: Is there signal in the noise? Are these data or results… from the ‘Twitterverse’ generalizable to a broader population?” They also emphasized the need to establish analysis standards and overcome any ethical issues in linking the data with medical or clinical information. Turakhia added:

“Twitter users do not represent the broader population, but that’s not really its purpose. Twitter allows us to examine a highly connected subset of society and learn how cardiovascular disease might manifest in their connected world.”

Ultimately, researchers hope to use this new information to improve their patients’ health, but the research is in its infancy, he said, adding:

“We haven’t yet figured out how Twitter or social media can be definitely used to improve health and health care. The obvious avenues would be through social and community engagement. Although sharing of personal information is at the cornerstone of the success of social media, I’m not sure that society is ready to be as open with posting health information, as they are with selfies or pictures of kids. However social media could be used to gamify health care behavior by providing incentives, and that won’t need disclosure.”

This is a reposting of my Scope blog story, courtesy of Stanford School of Medicine.

A look at how social media helps connect patients with rare diseases

Photo by Jason Howie
Photo by Jason Howie

If you suffer from a very rare disease, getting the proper diagnosis can be an arduous journey. But a bigger challenge may be the feeling of isolation, since there may not be any support groups where you can connect to someone who is going through the same thing.

That was the situation the Bigelow family found themselves, and they turned to social media for the solution.

Bo Bigelow knew that his six-year-old daughter Tess had a genetic mutation called USP7. She also had global developmental delays in basic functions such as walking and talking, causing her to function at the level of an 18-month year old. Was USP7 the cause of her developmental delays?

Bigelow spread the word about his daughter’s genetic condition to find out, posting on Facebook, Twitter and a personal website with the plea to “help us find others like Tess.” A friend of the family also posted on Reddit, where it was read within 24 hours by a researcher at Baylor College of Medicine who was studying USP7. His research group had already identified seven children similarly affected by the same genetic mutation, and they were about to publish an article about it in Molecular Cell.

Tess may become part of future clinical trials at Baylor, but the researchers also connected the Bigelows to the other seven families. “These days there are ribbons and awareness-weeks for so many diseases,” Bigelow said in a recent KQED Science story, “but when yours is ultra-rare, you feel completed isolated. You feel like you’re never going to hear another person say, ‘Us too!’ And being connected to other families changes all that.”

The KQED piece goes on to explain:

“Patients or parents like Tess’ who are seeking answers to seemingly unsolvable medical mysteries have new tools to reach out, not only on social media, but in crowdsourcing websites like CrowdMed, a subscription service for people seeking answers to medical conundrums. At CrowdMed, people who have symptoms but have yet to find a diagnosis seek opinions from the site’s “medical detectives,” only some of whom are medical professionals.”

This is a reposting of my Scope blog story, courtesy of Stanford School of Medicine.