My name is danah boyd and I'm a Principal Researcher at Microsoft Research and the founder/president of Data & Society. Buzzwords in my world include: privacy, context, youth culture, social media, big data. I use this blog to express random thoughts about whatever I'm thinking.

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Challenges for Health in a Networked Society

In February, I had the great fortune to visit the Robert Wood Johnson Foundation as part of their “What’s Next Health” series. I gave a talk raising a series of critical questions for those working on health issues. The folks at RWJF have posted my talk, along with an infographic of some of the challenges I see coming down the pipeline.

They also asked me to write a brief blog post introducing some of my ideas, based on one of the questions that I asked in the lecture. I’ve reposted it here, but if this interests you, you should really go check out the talk over at RWJF’s page.

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RWJF’s What’s Next Health: Who Do We Trust?

We live in a society that is more networked than our grandparents could ever have imagined. More people have information at their fingertips than ever before. It’s easy to see all of this potential and celebrate the awe-some power of the internet. But as we think about the intersection of technology and society, there are so many open questions and challenging conundrums without clear answers. One of the most pressing issues has to do with trust, particularly as people turn to the internet and social media as a source of health information. We are watching shifts in how people acquire information. But who do they trust? And is trust shifting?

Consider the recent American presidential election, which is snarkily referred to as “post-factual.” The presidential candidates spoke past one another, refusing to be pinned down. News agencies went into overdrive to fact-check each statement made by each candidate, but the process became so absurd that folks mostly just gave up trying to get clarity. Instead, they focused on more fleeting issues like whether or not they trusted the candidates.

In a world where information is flowing fast and furious, many experience aspects of this dynamic all the time. People turn to their friends for information because they do not trust what’s available online. I’ve interviewed teenagers who, thanks to conversations with their peers and abstinence-only education, genuinely believe that if they didn’t get pregnant the last time they had sex, they won’t get pregnant this time. There’s so much reproductive health information available online, but youth turn to their friends for advice because they trust those “facts” more.

The internet introduces the challenges of credibility but it also highlights the consequences of living in a world of information overload, where the issue isn’t whether or not the fact is out there and available, but how much effort a person must go through to manage making sense of so much information. Why should someone trust a source on the internet if they don’t have the tools to assess the content’s credibility? It’s often easier to turn to friends or ask acquaintances on Facebook for suggestions. People use the “lazy web” because friends are more likely to respond quickly and make sense than trying to sort out what’s available through Google.

As we look to the future, organizations that focus on the big issues — like the Robert Wood Johnson Foundation — need to think about what it means to create informed people in a digital era. How do we spread accurate information through networks? How do we get people to trust abstract entities that have no personal role in their lives?”

Questions around internet and trust are important: What people know and believe will drive what they do and this will shape their health.

The beauty of this moment, with so many open questions and challenges, is that we are in a position to help shape the future by delicately navigating these complex issues. Thus, we must be asking ourselves: How can we collectively account for different stakeholders and empower people to make the world a better place?

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1 comment to Challenges for Health in a Networked Society

  • tz

    There are serious problems. Michigan just passed a law to allow Doctors to (in violation of the Hippocratic oath) narc on elderly that they believe are unable to drive properly (or if they just don’t like them, guilty until proven innocent?). I haven’t been to a doctor for years, and the last time was an emergency where I was knocked senseless. I don’t know what I will do under the invasive Obamacare – if I will even be able to afford insurance, or even be able to obtain treatment under any terms I consider acceptable. I am reasonably certain I will have to avoid most things “on the grid” that would provide early detection, but the alternative is virtual rape.

    Google+ and anywhere else where they demand your real name is a problem – are you going to say anything about a condition more serious than dandruff?

    Do I trust the government or whichever agency NOT to get hacked or otherwise expose my private medical data? No. http://www.healthcareitnews.com/news/irs-face-lawsuit-over-theft-60-million-patient-health-records How do you unring a bell? I personally don’t have anything embarrassing, but but what about those who do? Pass a law to force everyone to pretend that Anonymous hasn’t posted the fact that you had breast cancer and a mastectomy somewhere?

    Nor do I trust what the medical establishment says about vaccines (as you are pregnant, you need to decide – is the mass megadose in the first months absolutely safe or not? Or can you cherry pick the vaccines for the best risk). They have been lying – carbs not calories – for decades. They said formula was better than breastfeeding for a long time. They say grains and high-fructose corn syrup aren’t bad for you.

    The internet can give you both the orthodoxy and the heresy – and you have the freedom to decide on which to believe and/or trust. Freedom means responsibility. Is the risk of putting up with condition you are seeking a particular treatment for greater or less than the risk of the treatment itself? If there are multiple treatments which is the best in your circumstance?

    There are few things one really needs to take control of and responsibility for, and health is one of the most important that crosses all lines – religious/atheist, liberal/conservative, man/woman, rich/poor.

    It would be nice if it were simple and you could simply trust anyone. But that is the antithesis of taking control and responsibility. It is better to “trust no one” and spend the time and effort to understand and decide for yourself. Otherwise you can complain that something went wrong, that you were lied to, or were an “outlier”, but in the end you put your health/life/faith in the hands of others without due diligence.