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:

Netspeak

Netspeak is a language dictated by your keyboard - and the tools you are granted to express yourself with online. Netspeak can turn in to something all its own depending on what site you're using. For example, Twitter has its own language entirely. On Twitter, you are further restricted in this capacity by the 140 character limit per tweet. There are also a number of shorthand words and shortcuts for reference other users that you must learn to fully utilize the site.

You would never say these things in real life (not usually anyone that I've come across anyway), and the language further ignites a function of some kind on the application (like @user will create a hyperlink to allow followers to click on your friend's twitter account/profile. Things like this occur all the time, evolving constantly, on social networking sites. On PLM, for example, you have an entire type of communication unlike any other social network - openly sharing the deepest pains and struggle attached with a disease or illness like MS or Borderline Personality Disorder. Another element of PLM's netspeak can be summed up by this abbreviation for the word "diagnosed:"

Research Part 2

Part 2 of our exploration into the research and communication pairing on PLM is the "research" tab itself. When you click this tab, it brings you into a whole new, and more official, world. This is the world of clinical trials, public research, team member (staff) research publications, and comments sections that involve patient to patient communication and specifically, doctor to patient communication (I'll cover that in a future post). This is where patients can come together and write about opinions, hopes, thoughts, and different methods that they have tried, will try, or have an opinion about in general. Here is an example research publication with comments by patients and doctors.




You can see from the highlighted text that there is a very personal, yet serious tone to these comment threads - considering it involves incredible conditions and actual communication with an PhD (Paul Wicks in this case) from the PLM website team.

Research Part 1

This is going to be a two part post about research. Part 1 will cover the research and results that occur when all of the patients on PLM chart their symptoms and treatments - results that anyone can look at (cumulative). Part 2 will cover the "research" tab on the PLM website and where that leads, and how people use it to communicate differently than the rest of the forums and messaging.

Let's start with this photo. It's a photo of some statistics compiled by PLM using patient data entry for the benefit of other patients.


You can see that patient communication is indirectly happening when one patient fills out their "charts" and another patient can benefit from the data. This is all made possible by the quick and easy Internet sharing and middlemen that staff the website. It acts a lot like a recommender system, but it's not as forceful as it might be on another website where you're forced to "receive" this communication - it's more about your needs, legitimately.

The Community Factor

The title of the site says it: Patients Like Me. The purpose of the site is to find others like you, but how do you find them? First, you enter your conditions/diagnoses into your profile, then you click the "Patients" tab at the top. You can filter your searches (hopefully your condition has many patient users that come up as a match) to find people even more like you (age, gender, etc). After that, you can contact them directly.

More interestingly still, there is a "forum" tab next to the other tab, and in this tab there is a goldmine of patient communication. You can choose to go into one of the "rooms" associated with different categories of conditions such as mental health, or endocrine, or you can simply visit the general "Patients Like Me" room where everyone can talk about anything. Threads begin and can go on for two posts, or pages upon pages of posts, much like any other message board or forum. This suggests a great level of depth because the posts tend to be long, and involve a lot of response to people's posts within the posts. Though the posts are in indented and don't allow for specific replies, people find a way to reply to either the thread beginner or another used within the thread. Here is an example of an ongoing forum post:

The Profile. The Profile Picture.

The profile and the profile picture upload are an integral part of social networking - the defining characteristic almost. So how is it used here? What about anonymity? A lot of people on PLM don't upload a picture of their face, but maybe a pet or a landscape like you can see in this first picture above. But you can see in the profile that this profile's "about me" section is unlike any other social network's profile. It is deeply, and completely personal. That is the point on this site, after all, past finding people like yourself, but finding people that have the same deeply personal problems like yourself. This completely changes the landscape as far as socializing on the web and how we write about ourselves.

The main problem with profiles on other sites (like Facebook or MySpace) is that it usually exists to serve the viewers - the audience, and therefore is shaped by the user to reflect an edited and carefully shaped personality - interests and "about me" included. Sure, it might be pretty accurate, but when you strip away all the nonsense and start talking solely about medication, symptoms, doctor's visits, and needing support from others - it's all about the nitty-gritty truth. Even if this picture IS of a bug or a flower and not a human being.

Labeling Yourself

If I don't feel like writing up an entire profile, or responding to a question online (or in person for that matter), I sometimes wish I could just check a box, use an emoticon, or drag and drop a description - a label. Labels are an important part of our culture. Whether it be in your filing cabinet, on your turkey sandwich bag, or in the form of describing a subculture (i.e. punk, hipster, hippie), labels are used every day. Labels have now become integrated into our web experience in a positive and convenient way as well, not just for bullying or self-indentity. In a way, however, it does serve self-identification. On Facebook, I can just start to type a word in the "interests" category of my profile, and the word will pop up, spelled correctly and accompanied by a nice picture, which I can then drag and drop into my profile. This same kind of labeling takes place on PLM, but in a much more important scope - medical conditions.

Mood Mapping

"Mood Mapping" and graphing many other sorts of things (like symptoms, weight, medications and treatments, etc.) is another way of revealing the self and communicating on this website. It falls in line with what I find find to be the main route of self-identification: labels. Labels play an important role in the PLM website's communication and personal page characteristics. People can put themselves into easy categories through mood mapping, using predetermined (by the site) labels to show the world, and themselves, a simple chart of who they are and who they have been in the past. We'll cover communication through labeling more in a later post. First of all, what does mood mapping look like? What does the patient profile chart history look like?



As you can see, though it's small, the charts appear as color-coded, nicely labeled and viewable lines and waves dictated by dots of progress. With red generally meaning worse, and lighter colors usually meaning good. In the second photo snap you can see a different line for every symptom that goes along with the condition that this person has been diagnosed with. This allows people the opportunity to communicate with producing content of their own, but simply applying labels to their feelings. This can aid in a very streamlined look for each patient profile, easily understood by others, and easily organized by the user - without frustration. Keeping up with it and updating your every feeling could end up being the hard part.

Revealing the Self (on the Web)

What does it mean to reveal yourself in person? It means answering questions, divulging information, and basically, having a conversation - verbally - with another human being or group. Sometimes it can be through art, music, preparing food, but the main thing I mean is being able to show people who you are, or who you identify yourself as, to the world. This is done online all the time, but in a different way. On the Patients Like Me (or PLM) website, revealing yourself is done several ways - some similar to other social networking sites, and some similar to visiting a therapist or your closest friend in person. The profile, the profile picture, and the forum postings are the ways that I'm specifically referring to. Check out the following snapshots to get an idea of what the site looks like:

Are There Any Other Patients Like Me?

Yes. There are.

You can find them on www.patientslikeme.com - people all over that have the same conditions, diseases, or mental health issues that you or a loved one might have. Anyone can get an account, and it's free and anonymous. This might sound like free publicity for a social networking site, but it's not. This blog is about the communication on the site, not so much the people or the purpose of the site. Social networking websites have become an integral part of society now, and a lot of people want to know how it's changing our "real lives." How we socialize, how we spend our time, how we make our friends, how much time we spend away from our real lives on the internet chatting with "internet friends."

But what if social networks are just part of our real lives? Getting on the internet, signing up for Facebook, and talking to friends you met at school, at work, or on the internet, sure that could involve some argument about whether Facebook is virtual reality or a continuance of your real life. But getting on the internet and signing up to talk to other people who have your disease? Maybe diabetes? Maybe Bipolar I? That is very real, and directly affects and involves your every day life.

So what's so interesting about the way people communicate on this website? It's the language they use, and they ways they use it to reveal themselves. Writing a book is real, and so is writing on the web. It's just different. How is it different? It involves different vocabulary, new words, abbreviations, and ways of expressing emotion. So lets see what Patients Like Me allows for in the way of communication for people like you and me.... I joined a couple of weeks ago :)