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
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This will be a great help for both consumers and the medical community. There needs to be a well accepted understanding of what the expectations are with web and social media participation. Formalizing that relationship in a well thought out document is a great first step.
I think this is a marvelous thing you are doing, most of the doctors only care about laws, licenses,how many patients they can squeeze in per day, as I was told they have TIME CONSTRAINTS, well pardon me I can’t word the meds, and conditons in that time, then they say I talk too fast, DUH, you said you had time constraints! LOL I’ve run into horrors that would take too long to write and to be honest? talking about it depresses me, I want to live, I know what I have, ( Probably not) but I do know what I can do and I want to do it! LOL I’d like patient care. Not more pills and in and out see ya. Thank You!
Donna yes I have too much seratonin so their efforts at trying to deal with anything medical where the main answer is TAKE AN ANTIDEPRESSANT. Well that was a horror, then they told me I was seratonin drunk and put me through weeks of hell! My doctor said WHO tried to give you antidepressants? I said just talk? I said the genius you sent me too. LOL
“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.”
I’m very happy that you give patients this much credit as a doctor, but I’m afraid you are being overly optimistic for the human race here. Most people are fairly lazy, and this includes the process of thinking. As such, even if they are “equipped” with tools to get informed, they don’t use them. An example is internet. How many sick people actually do an extensive research on their health problems? Most people have at least some access to it, and even 30 minutes googling something is usually enough to at least get basic understanding of a problem. But most people are lazy, so they’ll just go to the doctor, and say “fix me”. (My Allergy doctor was complaining about that.)
In conclusion, it is great to give people tools to get engaged, but don’t expect most to…
Dr. Benabio-
Thank you for bringing attention to the need of being an informed patient, increased resources coupled with the rise of social media makes it nearly impossible not to gain some sort of insight into various health topics. To address the point Nina raised, I do believe that there has been an increase in the number of patients that do inform themselves of aliments that could be plaguing their bodies. However, I believe this is a generational trend that is slowly expanding to include older adults. As a college student, I am surrounded by my colleagues who rely on sites such as WedMD and the Mayo Clinic for medical information, often employing their symptom checkers to determine if that nagging cough is the common cold or something more serious. Dr. Benabio, in your previous post, “Why Twitter is Bad for Your Health,” you address the issue of misleading medical information. As empowering as health 2.0 may appear, would you agree that it should be used as a springboard to stimulate conversation with one’s health care provider? Being one who is greatly interested in medicine, I see the benefits of generating a few questions before going to a doctor’s appointment, yet with the multitude of information available it can seem a bit intimidating at times.
Switching gears, you mention that the fear of lawsuits discourages medical professionals from engaging in social media. With this knowledge you are still an active participant of the cyber world, not only hosting a blog but also having a presence on both Twitter and Facebook. What motivates you to partake so heavily in social media despite its risks? Having read both your “About Dr. Benabio” and “Disclaimer” sections, I gather that you are an established physician who is very much involved in the dermatology community. When you first began this blog what concerns did you grapple with? Spearheading the movement to create the Online Patient’s Bill of Rights, it is clear that you support the usage of social media and health 2.0 to empower patients to take a more active role in their health care; however, how do you see this bill being utilized over the web?
Quite an informative post and supporting comments that you have here. I should point out that other people have made a different case, particularly in regards to natural health. Have you seen more information on the Internet, and would you give me some direction?
I have searched endlessly and seen too many doctors who know squat, and just write me another prescription, but I am running out of time. I have severe thin syndrome, had to pay a dermatologist 90 bucks to hear you need a physical barrier, It’s my hands and lower arms! Now they blame the prednisone I am on, I am on oxygen 24/7. deveoped RA, and too many other things to list when I was 39 now I am 55! Okay so what kind of a freaking skin barrier so I can use my hands and arms? One simple tap, I’m covered in purple lesions and my skin flaps and tears at the slightest touch. I’m not dead yet, I can still walk, I’m housebound but I’m alive! I’m an artist. I NEED to be able to use my hands and I’ve seen so many doctors who have all of my money now, and learned DIDDLY. Happy go lucky smiley my old nick names has HAD IT! I want to know if not what is wrong with me, WHAT TO USE? WHERE TO FIND IT and how do I subscribe to this blog?
Now my teeth are breaking off all at once and they doctors said it is because of my meds, the dentist and oral surgeon who is a butcher I think, told me that and the insurance does not want to pay saying it’s not MEDICAL THEN WHAT IS IT? I’ve had it, sorry for the rant I am really very nice and I am sure most people like me or reading here ARE, Okay looking still and again for any answers or help! I don’t think wearing fingerless gloves, which I just ordered will do it, my hands are not cold! LOL
Okay Thanks so much! Donna