I recently started using Posterous as an annex space from my blog, instantly uploading pictures, sound files, stories, and videos from my phone. Where I would have had to wait until I returned home from a party or event, hooking my camera up to the computer, downloading and sizing the photos, slowly uploading them individually to my blog, they now are sent instantly and I return home with the whole night already blogged and commented on from people reading at home.
Same goes for using Twitter or Facebook while on the road. These three pieces of software are but a few of the options out there for creating a lifestream rather than a static blog.
It's a wonderful and scary new world.
The wonderful part is obvious--thoughts popping up in all corners of the world are accessible and exchanged in real time as events unfold. There is something raw about lifestream writing, unfiltered, unedited.
The scary part takes into consideration a larger picture. Whereas Tweets disappear into the ether and do not show up in a Google search (Twitter does have its own search engine) and Facebook status updates are somewhat protected, sites such as Posterous are not only open to the public unless set otherwise, but these posts are Googleable in the days, months, and years to come. They operate in the same way as a blog, but provide the immediacy of Twitter.
Therefore, when the circumspection afforded by the drive home to get to the computer or the emotional cooling off time after something hurtful has been said now ceases to exist, there is room for regret both on the part of the writer and the object of their wrath.
Doctors, nurses, clinics, and agencies have plenty to fear from the power that live-blogging affords. The online world has become the equivalent of the backyard fence, with bloggers constantly exchanging advice and opinions with one another. It can be a frightening thought in a consumer-driven area of medicine such as fertility treatments or in the area of adoption agencies, knowing that the information once contained between two people at the backyard fence is now accessible to anyone Googling for information before making a decision about a doctor or agency. And they are receiving that opinion out of context, without knowing anything about the speaker other than what is shared online. Get enough angry patients stating their thoughts online and the reputation of a clinic or agency can be sullied for future patients.
This, of course, has been true for years with the advent of blogging, but it is the immediacy of sites such as Posterous coupled with the Googleability of those sites that changes the playing field. Prior to this point, if a patient had a bad interaction with a doctor or nurse, that information was tempered with the time it took to get from the clinic to the computer. In that time period, the person may have the emotional clouds part to examine how their actions can affect another person. There are things I'll consider doing while upset that seem simply hurtful in retrospect when I have time to calm down. Posterous removes the cooling off zone.
And while this may not seem like a problem for patients and therefore none of our concern (after all, it's hard to feel a lot of empathy when you just ate $10,000 on a failed cycle), it is when you consider it through the lens of HIPAA. Just as these laws have been set up to protect the privacy of patients, to ensure that doctors are giving the people they care for respect, the impulse needs to flow both ways if patients and doctors want to continue having a respectful relationship. I am not talking about the micro-level--your relationship to your personal doctor--but an overall climate. Doctors need to know they can trust patients in order to do their job well.
I think of it in the same way as traffic cameras. They sound like a good idea in theory--making sure people obey the speed limit--just as stating your opinion online sounds like a good idea in theory--you could protect someone from receiving the same crappy treatment you received. But the reality of traffic cameras and speed traps is that they cause more traffic accidents because people are focused on not getting a ticket rather than driving well. Doctors need to focus on practicing medicine and not protecting their reputation. At least, that's my feeling.
While the idea of live-blogging pitfalls applies to all health care situations as well as other facets of life including relationships, family interactions, and education, I've been looking at it through the lens of infertility since infertility is an emotional disease that thins the skin as time passes in the family-building arena. When emotions are already running high and emotional reserves are depleted, small mistakes can feel huge.
I think there are many things doctors and adoption agencies can preemptively do. A frank discussion can go a long way. Doctors can state their expectations about blogging in regards to patients during the initial interview, explaining why problems with the clinic should be brought to the attention of those able to remedy the situation rather than simply shouting about it on the Internet. Adoption agencies can ask those who are going to blog about their journey to keep their blog set on private. Just as patients are reminded about HIPAA laws the moment they fill out the paperwork with a new clinic, patients should also be reminded that respect needs to flow both ways.
A way to register a complaint within the clinic (or agency) and have it heard (in other words, follow up given to the patient that shows the clinic is taking the complaint seriously) is key. Doctors should provide a clear-cut way for patients to give the doctor or nurses feedback directly rather than having them turn to the Internet as a way to voice their ire. Provide an email address for someone in charge of patient relations or an online form that patients can fill out after a bad appointment, with the patient understanding that their words are not going to affect their treatment at the clinic (or, in the case of adoption, agency). After getting this information, follow up with the patient in a timely manner, making sure that as you're treating the physical side of infertility, you are also doing your part to make the emotional side easier.
Doctors and agencies finding poor reviews of their service online shouldn't write off the words as simply angry spoutings from a thin-skinned patient. Instead, use that information to make tweaks in service and address concerns not with the patient directly (which doesn't allow both parties to save face and feel comfortable), but with the clinic as a whole. For example, if you are noticing that people are consistently blogging about the long wait between blood draws and result calls, shift the system so that expectations are set concretely (for example, "we will only call after two o'clock and will call before five o'clock") and move bad news phone calls to earlier in the day before the good news or maintenance calls go out (hint: no one complains when they get a call however late with a positive beta).
How to Build a Family recently spoke about the inverse of this situation, how drug companies and clinics could use social media and lifestream software to talk about their product or care. She writes: "Stay tuned to see what the FDA has to say about what can, cannot, and most importantly, must be said to you Tweeps and FB'ers by the sellers of health care."
Tales of My Follies also blogged about Twittering about infertility. She explains, "Being able to twitter could be good for things I want to get of my chest, but aren’t worth a full blog entry." And while not related to infertility, Dealing with Life has good points made about angry blogging comparing it to drunk dialing and the regrets that can come from that (though, in the case of blogging, it's not just the recipient of the phone call who gets to hear your teary confessions--it's the whole damn world via the Internet).
What responsibilities do patients have to doctors with this powerful medium in place? How can doctors best address blogging and lifestream writing with patients? And what other ways do you think clinics and agencies can show patients respect and help defuse tension before it hits the Web by making tweaks to their clinic protocols and procedures?
Melissa is the author of the infertility and pregnancy loss blog, Stirrup Queens and Sperm Palace Jesters. She keeps a categorized blogroll of over 2000 infertility blogs and writes the daily Lost and Found and Connections Abound, a news source for the infertility blogosphere. Her infertility book, Navigating the Land of If, is currently on bookshelves (May, 2009). She is the keeper of the IComLeavWe list and compiles the yearly Creme de la Creme.
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