How do you make sense of all the information and stories that come with chronic illness? That’s exactly the challenge that the Patient Experience Team has taken on at PatientsLikeMe. Our goal is to create data visualizations that help you gain insight into your health, recognize emerging patterns and learn from one another’s experiences.

Recently, I flew to Seattle to give a talk entitled “Adventures in Data Visualization” as part of the Web App Masters Tour (WAMT). (I’ll also be presenting it again at the final WAMT event in Minneapolis, which takes place June 27-28th.) During my talk, I share our process for translating people’s individual health stories into data – which, unlike text-based stories, are something that can be measured, compared and visualized.

Data visualizations are great at helping people process complicated information quickly and answer questions that can be much harder to answer other ways. For example, is my experience normal? How are my treatments affecting my symptoms? Is my quality of life improving? What happens if I stop taking my medication? With data visualization, you can see patterns that correspond with changes to your medications, lifestyle modifications and more.

Ultimately, PatientsLikeMe is creating a shared visual language that allows your story to be part of a larger story, one that is enriched by data. We are continually working to make it easier for you to learn from the data you share, and that patients like you are sharing as well. Why is this so important? It allows you to put your story in context and find others like you. Ultimately, it allows you to see what you can do to achieve the best health outcome possible.

Have you “seen” something on your profile charts – or that of other patients – that helped you answer your questions? Share your experiences with data visualization in the comments section.

As David Williams discussed in his blog on Monday, we all have to make choices. And for patients like you living with serious medical conditions, there are obvious treatment and career decisions that you have to make—finding the right doctor, deciding which treatment options to try and determining if it’s still possible for you to work in your current profession or if changing jobs or applying for disability is the next step. Like David’s mother, who has battled cancer three times, many of you report that your condition has significantly altered your career choices.

This got me thinking about the tradeoffs that patients like you have to make in order to take care of your health and conserve energy. Beyond your career path, a number of you have been sharing the ways your condition impacts day-to-day decisions, such as making plans with friends. For many of you, this is no longer an easy thing to do, and it can have emotional repercussions. Will your friends understand if you have to cancel? Will you feel guilty? Overall, how do you balance your desire to stay active and social with the need for flexibility due to unpredictable symptoms?

You’re not alone if you struggle with these lifestyle tradeoffs. Fortunately, there is much to learn from the collective experiences of patients like you. You don’t just talk about your challenges at PatientsLikeMe. You also share your inventive solutions to the daily dilemmas you face. Here are just a few of them:

A New Holiday Tradition
“My family is used to me hosting family gatherings, large meals, etc.  This is a difficult issue for me these days…and yet it seems family members don’t realize how hard it is.  I just come right out with it and say something like:  “Sure wish I could still host Thanksgiving like I used to.”  Actually, last year we had dinner at home, but it was catered by our local grocery store.  They cooked most everything and even delivered it piping hot. It was great!”

The At-Home Get Together
“If I’m home I feel much better than if I put myself out there where who knows what may happen. At home I have more energy, and things are easier for me. My best friend may stop over unexpectedly. We’ll talk for hours and I have no problems and love the visit. That same friend will call and say a few people are meeting at a restaurant. Nine times out of 10 I’ll cancel. I may tell myself I want to go, but there’s the ‘unknown’ part I may not want to chance.”

Telling People Right Away
“You can change attitudes by talking to people.  If they decide not to be your friend any longer, it’s their loss, and they really couldn’t have been great friends to begin with.  I had a really hard time talking about [my condition] to people at first  and lost some ‘friends’ when I started talking about it.  But now I tell anyone who will listen and have actually gained friends because I have stood up for myself and would not let my disability define me.”

Backyard Activities, Shorter Trips
“I realize I have limited energy and that activity can worsen my symptoms so I often pick and choose what it is that I’m going to do. I’ve traded in activities like hiking and playing softball and martial arts for backyard or casual bird-watching and I do a little photography but the weight of my camera has become an issue since I don’t drive. I used to shop all day by bus and public transit but now I make shorter trips and sit down a lot or plan a day when I just go to the grocery store and then rest.”

Find the Right Balance for You
“I went on disability about six months ago. I wasn’t performing well at work and it made me feel worthless and stressed out. I just needed to drop some stressors.  Now I go to school. I took two classes and got A’s in both.  This coming semester, I’m taking three classes.  I’m slowly increasing the things I’m responsible for, as I have also found that when I’m doing nothing I get depressed.  It’s just a balance you have to figure out for yourself.

As these stories reveal, patients like you must develop a personalized approach to socializing, activities and family gatherings. At the core for everyone, though, is a series of choices about how you allocate your energy. Did you notice that the condition for each patient was not mentioned, by the way? That was deliberate. The point is that every patient, no matter what condition, faces social and emotional choices every day. What works for one patient may not work for another, but there are universal takeaways whenever patients like you connect with one another.

Thanks everyone for a great 2010.  As we kick off the New Year, PatientsLikeMe would like to take a quick look back at the road we’ve traveled together this year.  We think of all these improvements as laying the groundwork for even more exciting changes to come in 2011.

At the start of 2010, we set out to tackle two very important goals that could help you, our members, get the best possible experience out of PatientsLikeMe:  1) unify the way we collect medical information and 2) give more information back to you so you can see how you fit in and compare your experiences with others.  Kate Brigham recently talked about some of the improvements we’ve made on the second goal in her Share and Compare post, but I’d like to share a bit more about the first goal.

Our communities have a lot in common despite their different conditions and health concerns.  As Tommy Maker said in a recent newsletter interview, “I’ve learned that we all care enormously for each other and are very eager to help those who find themselves in the same boat as we are.  But most of all I’ve learned that I am not on my own.”

“We are all in this together” is the sentiment we hear from you time and time again.  In that spirit, we made a lot of changes to unify your experiences across all our communities.  Many of these improvements started in one community where some of you tried functionality and gave us good feedback so we could improve things and share them with all patients.  With the rollout of every product development below, you can now better share and compare your experiences.

Here are some examples of ways our communities have helped each other learn and grow in 2010:

• Flash charts: We piloted these in the ALS community last January and received a lot of great feedback.  Since that successful pilot, we converted the profile charts in all our communities to these more flexible and easier to understand charts.  This change also enabled future enhancements, like re-organizing your profile and better Doctor Visit Sheets.

• Condition History: While many of the questions you answer on PatientsLikeMe are very specific to your medical condition, there are a lot of questions that apply to any and all patients.  When did your symptoms start?  Do you have a diagnosis?  Are you taking any treatments?  Now members across communities answer many of the same questions in the condition history so everyone can share and see how their answers compare with the rest of the community.

• InstantMe: This idea of asking you a quick question about how you are doing started out as InstantMood, and was available only to members of the mood community.  They gave us great feedback and helped us to improve it (especially adding a “neutral” answer choice) before we rolled it out to patients in all our communities in November.  It’s now called InstantMe.

• Quality Of Life: The quality of life survey we just made available to all members at the end of December was piloted in the HIV and Organ Transplants communities.  By having a way to measure your social, mental and physical well-being, now you can gain a better understanding of how your condition affects you – the whole you.

Thank you to all the members of our community who continue to share and learn along with us.  Watch this year in review video to see how you all have contributed to making the patient experience on PatientsLikeMe one of a kind.

Over the past seven months of working at PatientsLikeMe, I’ve come to think that the idea of sharing medical and health information is completely normal. Since giving birth to my nearly 3 year old daughter, I have continued to be eternally grateful to other mothers who have willingly and openly shared their deeply personal experiences and advice so readily. There are some unexpected things you have to deal with, and nothing is so helpful as the wisdom of others who’ve been there. Then this December, I had a moment of pause. All of us at the company received a year-end gift of 23andMe‘s Personal Genome Service. Here was my chance to find out what my genes have in store for me and to find out what I might have passed onto my little girl. But do I really want to know? And once I find out, do I want share that information?

Well, it took a while to decide and I hadn’t expected that. I realized that deciding to put very personal details about my health, current or future, out into the world is no small thing. I commend each and every person who has chosen to share their information in our PatientsLikeMe communities. I wouldn’t have made it this far into motherhood without the nitty-gritty, honest information that other mothers have shared with me, and I’ve been truly and deeply inspired by the information that people have so willing shared on our site. I would certainly want access to that knowledge and experience if I needed it. But, if I want to have access to that kind of information, then I have to do my part too. So in the end, I decided to spit. Now I’m waiting to find out what my genes have in store for me and my family. Openness, here I come.