How Consumers Are Crowdsourcing Health and Safety Matters

Overview: In a world that’s heavily interconnected and collecting data constantly, consumers are using those tools to protect their health, find support for their ailments, and even discover new solutions to their medical problems. However, the data from crowdsourcing needs to be balanced against other expertise, so health professionals need to participate in these crowds and help guide them.

Health In An Interconnected World

In science, there are two branches. Pure science is the abstract research that we do to better understand, refine, and in some cases discard and rewrite, the theories that underpin how we believe the world works. Applied science is using the results of pure science to address the real world.

In medicine, the tension between theory and application is particularly intense. Everyone’s body is different, and treatments that normally work, or symptoms that normally display themselves, aren’t guaranteed.

Now patients have another option, using social media networks, podcasts, and other tools to crowdsource. They’re finding others experiencing their issues, reporting rare symptoms, sharing data, and otherwise offering a new perspective on medicine. In the process, advantages and disadvantages have emerged that health professionals need to be aware of, and keep an eye on.

Drawing Information From the Crowd

The biggest crowds are found on social media, which have taken a number of forms, from “COVID vigilantes” ranking businesses on their safety enforcement and policies to open discussion of hospitals on social media, to doctors becoming Instagram celebrities such as dermatologist Dr. Sandra Lee, helping to spread the word about rare skin conditions and how they can be treated.

For the healthcare industry, this can offer invaluable, unfiltered feedback on performance that simply isn’t available elsewhere. Up to 80% of patients won’t communicate with their doctors on important topics, so carefully monitoring these boards can help alert them to issues patients won’t bring up. Similarly, it’s led to better informed patients who can search their conditions online and get more information before they come in.

Broader datasets can also help with bigger issues, such as tracking outbreaks. Twitter, for example, has shown the ability to help medical teams track outbreaks by analyzing tweets for specific hashtags and terms. It can even help groups crowdsource exposure when other entities won’t step in. Fans of the band Phish, for example, began tweeting COVID-19 test results and their specific seat at a series of shows that saw an outbreak of the virus.

Even silly jokes can turn out to save lives. A member of the popular site Reddit posted a meme as a joke where he used an ex-girlfriend’s pregnancy test, and it came back positive. After several people told him to see a doctor immediately, he did so and found early-stage testicular cancer. It turns out the hormone the test looks for is also generated by several types of tumors.

Finally, it can’t be underestimated how important the anonymity of the internet can be for sensitive health issues. Topics people can struggle to bring up with their doctor, like erectile dysfunction, menopause, or mental health concerns, can be easier to discuss online and find support for.

However, there are concerns as well.

Is The Patient Always Right?

First, experience is subjective. One analysis of patient feedback on social media, when compared to objective measures of hospital quality, found the two rarely aligned and that hospitals poorly rated under government metrics enjoyed a higher opinion than they deserved.

Another problem is the spread of misinformation and even scientifically unproven diseases. One example is the belief among some that they have an undiagnosed skin disorder called “Morgellons,” where some sort of parasite causes a skin rash with fibers found in the sores.

Despite a years-long investigation by the CDC and repeated studies conducted by medical authorities, no sign that this disease even exists has ever been found. It’s generally held to be a form of delusional parasitosis, the belief that one is infested with parasites contrary to the evidence. Yet, there are many convinced they have it.

A more subtle problem is data overload. With the proliferation of health tracking tools, connected medical devices, and other sources of data, patients can fall down a “rabbit hole” of obsessing over numbers that mean far less than they think.

So, how can the good be subtracted from the bad? Doctors and healthcare professionals should take a few steps.

Getting The Best From The Crowd

  • Establish crowdsourcing and social media standards for everyone in your organization. Offer examples of what should be discussed and crowdsourced, what shouldn’t be, and offer guidance as to why. These should be driven by both medical ethics and common sense.
  • Monitor professional standards as they develop. Medical ethics and professional conduct boards are overwhelmed by the tidal wave of technology like any other industry, and what’s viewed as ethical is constantly shifting.
  • Understand how platforms work as both somebody reading and somebody posting. What draws a crowd and what doesn’t? What do crowds most need to know? And what engages them? Dr. Lee is a case in point; many come for the gross-out concept but walk away learning something about their skin and may even seek the treatment they otherwise wouldn’t have.
  • Focus on informative, useful, and shareable content crowds can work with to offer feedback. Ask and answer questions, send out surveys and polls, and otherwise bring patients and their families into the crowd.
  • Ask patients where they’re going online, where they’re getting information, and why they’ve sought that out. Seek out these resources and see what’s being said. Find support groups for chronic conditions and other concerns that are run by professionals or have a solid structure you respect.
  • Develop your own crowdsourcing platforms. This is ideal for patients and their advocates to offer ideas, approaches, and feedback, both anonymously and using their name, and will give you more oversight of how it unfolds. Have instructional tools and materials available for patients who aren’t familiar with the internet or may need someone’s help to access the platform.

Crowdsourcing is now part of the medical world, and everyone in healthcare should learn how to manage it. To learn more, request a demo!

This article was originally published on the IdeaScale blog here.

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