The Implications of New Media Writing and Medicine

What do all of the things I've covered in this blog really mean for you and I? Not a whole lot at the moment unless we're planning on joining Patients Like Me and becoming active participants (which I have done, as a matter of fact), so what about the future? Social network sites aren't going anywhere, that's for sure, but what about a kind of network that is so personal, and depends so heavily on life changing conditions that so many human beings have?

My experience has been nothing but positive, though it does take a bit of commitment to keep updating your every feeling and symptom for the days you log on (which is hopefully often, considering the information pool they need for your profile to make a difference in their data analysis/recommender system). The moderators have sent me about 3 or 4 messages welcoming me to the site, and there are about 2,000 people out there with the same condition as me (which I won't get into, because I'm a hypocrite). It's easy to navigate and there couldn't be more useful forum posts on any other site (unless you're looking for tips on how to tie off a scarf after knitting one).

This all points to accessibility. Accessibility to medicine, accessibility to support, accessibility to progress charts, accessibility to new studies - and this suggests that the user is taking medicine into his or her own hands by way of writing on the web. Accessibility to feelings, to sharing, and to other people on a website like PLM will lead to more educated and more participatory patients.

Anonymity

If everything you post on Patients Like Me is extremely private, personal, and possibly embarrassing - which is often the case - how do you keep people you know from finding out about your posts and profile? Anonymity is important for a website like this. Anonymity has been a part of Internet communication for as long as the Internet has existed, so we're no stranger to it - but it's getting harder and harder to keep the lines between your real life and your virtual life from blurring, and to keep people from finding out who you are (not to mention your social security number in some cases!). People on this website are confident that their postings will be anonymous regardless of whether or not they have entered in their names or not. My blog violates this trust automatically with its pictures - which is why I'll be taking them down after this class has finished (Writing for New Media of Summer 2011).

You can apply to belong to PLM as a patient, a relative or friend of a patient, a doctor, or a researcher. This all comes along with the agreement that you will keep the patients information confidential, but you can see how easy it has been for just anyone to join and out someone (me) so it's best to use a pseudonym and alternative profile picture if you plan on keeping yourself under cover. The fact that most people don't hide their identity tells me that this website is probably one of the most trusting and personal communities writing out there on the Internet today.

Prescription Hyperlinks

How deep does the rabbit hole go anyway? How far into your personal medical affairs can you get on the website? Sure, you can write about it all you want, but I spoke earlier about the mode of communication known as labeling or categorizing, so, in the same vein, you also have the ability to mark down whatever prescriptions you are taking, and refer to them in a forum post so that they come up as hyper links. Pretty cool right? People use this function pretty frequently and get a heavy response from the moderators and the people who may be taking the same drug and want to discuss side effects.

This easy function of communication suggests an easy way of communicating about something that might otherwise take some research. This way, you can simply click on the link if you're unsure what the drug does or what the side effects are. It truly embodies new media communication.

Authentic Medicine

At what point does posting thoughts on how a disease affects you become posting about what you think constitutes medical advice? If journalism can become a do-it-yourself type of industry online, can medicine? Can the social aspect of medicine overshadow real medical advice? Probably not since there are staunch laws to prevent someone from signing off on any medical advice with having an MD in hand along with the proper training - but let's think about how PLM delves into the murky waters of at-home medical advice. Is there any harm in giving someone else with the same bad menstrual cramps that you have the advice to "use a hot water bottle?" No, but what about telling someone about the medication and dosage you're taking for your Bipolar II? That could be misconstrued, and yes, the user taking your advice would be at fault for taking the advice, but still - the possibility is there. So it all boils down to this question: Is Patients Like Me more social or more medical?

Team Member and Staff Interactions

So if PLM is such a great tool, there must be some very involved staff working for the website, making sure that the users have everything they need and feel welcome, right? Absolutely. The staff is more involved (on a personal level) than any other social network I've been a part of, and this is fitting, considering the delicate nature of the communication that takes place between users. One pretty basic example of this kind of interaction is in the forums, and while at first glance, they look like pretty automatic or generated welcome messages, they later begin to address specific patients' comments and questions.

In the photo above, Liz is a moderator simply introducing herself, making her presence known, and offering to answer any questions - but I thought to myself, "okay, thanks, but are you a real person?" Well, I found out as I scrolled down that yes, she is real, and there are more of them like her...

One user, Tory, posts about her worsening medical situation, and a moderator replies personally, letting us (and Tory) known that they're there for us.

Doctor - Patient Communication

Will a website like Patients Like Me ever be able to replace doctor to patient communication? I don't think so. Will it begin to integrate, however, I think it definitely could - and maybe it has already. As I've been exploring the site, I've noticed that it's suggested often times, and possible, to print out whatever you like to take to your doctor. You can take your doctor your progress charts (very handy), or even take a print-out of a new clinical trial that you've been matched with on PLM as a possible treatment to talk over with her, or maybe some of your PLM friends have tipped you off about a medication they are taking that seems to work for their disease.

In short, a website like this and all of the new media communication that takes place on it can transfer into communication in your "real" life, your medical future. This kind of thing can help your prognosis in a big way or maybe in a one in a million way - any way is a good way, regardless of who it ends up helping.

Self-Diagnosis

One of the most interesting things about the writing and communication on the Patients Like Me website is the amount of self-diagnosis vs. diagnosis that goes on when referring to the self. People fill in heir conditions and condition histories, sure - when they were diagnosed with this or that, etc. But what's more interesting is when they fill in the diseases they THINK they have or know they have without ever being diagnosed.

There's definitely room for some question here because you never know - it could be that they don't remember when they were diagnosed, or they don't actually think they have it but they want to have search results for patients that have it (maybe a family member has Rheumatoid Arthritis but they don't, or Type 2 Diabetes). This suggests that people have really taken officialese and their health into their own hands, just like the public has taken music and journalism into their own hands. Here's an example of someone who diagnosed themselves with Bipolar Type II as well as a slew of other issues that are undiagnosed by a doctor: