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 :)