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