Tag Archives: misinformation

The Online Patient’s Bill of Rights

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We need a bill of rights for online, empowered patients

You are an empowered patient. I know this because you’re reading my blog. You are an empowered patient because you participate in social networking, because you comment on blog posts, because you share links about health.

Social media and health 2.0 allow you to learn about your health, to connect with other patients, to share stories, and to encourage one another. They enable you to become an empowered patient, and empowered patients like you are changing medicine.

This heralds a new model for healthcare, a model where I am less of a paternalistic practitioner and more a professional facilitator. A model where you, the patient, are equipped, enabled, empowered, and engaged — you are an e-patient.

The benefits of patients taking an active role in their health will revolutionize medicine. Patients helping patients and patients helping doctors will be as important to our collective health as doctors helping patients was in the past.

Along with this great promise comes great risk. Engaging in health discussions online means sacrificing your privacy. It means making yourself vulnerable to mortification, to misinformation, and to mendacious drug companies and health providers.

Helping traditional patients become powerful e-patients is also a risk for physicians. Fear of lawsuit is a common reason why physicians do not participate in social media. Physicians are also concerned that information about their private lives might compromise their ability to care for patients.

Consider these other risks:

  • What if your discussion about endometriosis with a few online friends is suddenly shared with thousands of people without your consent?
  • What if photos of you partying on Facebook were used by your health insurer to deny your claim for liver disease?
  • What if a well-meaning online patient gives you wrong advice or alarms you needlessly?
  • What if you were my patient, and you learned about my political or religious beliefs with which you disagreed?
  • What if the information you read online was biased or funded by big pharma?
  • What if the stories and comments you shared on patient community sites were secretly collected by drug or healthcare companies who then used the information to spam you?

Medicine needs empowered patients. Empowered patients need protection. Following President Obama’s kick-off of the congressional Patient’s Bill of Rights last week, let us start crafting The Online Patient’s Bill of Rights. Our own crowdsourced bill will:

  • Protect your privacy in a way that is meaningful online.
  • Ensure that above all, you are treated with dignity.
  • Allow physicians to participate in social networks without paralazing fear of being sued.
  • Ensure that healthcare providers discuss but never practice medicine online.
  • Promote content that is based in scientific and medical truth.
  • Encourage discussion of all healing arts including Eastern medicine, spiritual healing, and natural treatments.

I invite you, patients, physicians, health providers, pharmaceutical representatives, government officials, and insurers to help write this online bill of rights. We’ll sign it together on Wednesday 23 March 2011.

If you would like to participate, then tweet about the bill using hashtag #TOPBOR (The Online Patient’s Bill Of Rights) or join the Facebook group: The Online Patient’s Bill of Rights.

Photo: Robert Huffstutter

Why Twitter Is Bad For Your Health

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The paradox of Health 2.0 is that along with unlimited access to medical information comes unlimited exposure to medical misinformation.

Social networks like Twitter and Facebook are replete with marketers in sheep’s clothing, pseudo-doctors (I hate to be a stickler, but a doctor should be a doctor and not just be a cool moniker like Queen is to Latifa), and friends who happen to be dumb.

When you combine these characters, finding truth is difficult in a sea of social media untruths. In this way, Twitter is bad for your health. Using social media sites to help with your medical problem means you’re getting lots of medical misinformation.

A study published in the American Journal of Infection Control proved this point. The authors looked at tweets and retweets about using antibiotics to treat a cold. They discovered that inaccurate or misinformed tweets were rampant and exposed 850,000 or more people to bad advice or wrong information about antibiotics.

I decided to do my own quick study. I searched eczema on Twitter; from the first 100 tweets here’s what I found:

  • A whopping 84 were spam.
  • There were sneaky spammers like a real-looking person who tweeted “Grandson 2 yrs horrible eczema tried all specialist not any better steroids no help?” and linked to a scary-bad-English site where you can buy drugs online without a prescription.
  • A real person who advised that eczema was caused by drinking coffee. (He must know something I don’t).
  • Three “natural doctors” (Queens?) with books and videos that promise to “CURE YOUR ECZEMA NOW!” (They obviously went to better medical schools than I, because I never learned the cure for eczema).
  • Patients giving medical advice to other patients. One link to a discussion went: “My 1 year old daughter has terrible keratosis on her arms and legs. Help?!” Discussion response: “Your daughter has keratosis pilaris. Use Eucerin Intensive Repair Lotion.” This is bad for several reasons. It’s inappropriate for anyone to give medical advice online, even a physician. I would never make such a diagnosis without seeing the child. I doubt keratosis pilaris is the correct diagnosis in a one-year-old. Lastly, Eucerin Lotion has alpha-hydroxy acid which is inappropriate to put on an infant (it might burn her skin).
  • Several links to a “Toothless Fish” that eats skin and will cure your eczema. Seriously.
  • An at-home LED light device that apparently we doctors don’t want you to know about. It treats your eczema AND acne AND wrinkles! Whew, I’ve been keeping that in for so long, it feels good to tell you. Now you know about the secret LED, and a burden has been lifted off my shoulders.
  • A twitterer with a potty mouth that I’m not gonna repeat here.

How do you know that the information you’re getting is accurate? Can you trust your friends? Social media and Health 2.0 are here to stay and have the potential to benefit patients and physicians. So how should you navigate to avoid bad advice?

  • Always question the source of the information. Both well meaning people and spammers can harm you — if it sounds too good to be true, it’s probably not true.
  • Always see your physician for diagnoses and medial advice. Use social media only to supplement your knowledge or to connect with other patients or health providers.
  • Always remember, you really don’t know who is posting information online — I could be a dog, after all, and you’d never know it.

Photo: Caricaturas (from flickr) and Peter Steiner, The New Yorker (from wikipedia).