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Dose of Digital

Your Choice: Your Privacy or Your Life?

Posted by Jonathan Richman in Innovation,Patients,Physicians,Social Media,Strategy on April 27, 2010

The folks over at CureTogether released some information last week that didn’t get nearly the attention it deserved. What they showed (again) was a little look into the future of healthcare research. Today it takes years and sometimes millions of dollars to study new and existing products so we can figure out where, when, and for whom to use them. A lot of the time and effort of these studies is wasted because many of these studies don’t prove anything. They either yield results that are inconclusive or show that a promising treatment is no better than what we already have.

Of course, some trials are blockbusters and change the way medicine is practiced. It’s the way that it’s supposed to work, but it doesn’t work as well as it could. The reason why many trials “fail” (i.e., don’t prove your new theory) is because they are chasing the wrong questions. They are trying to demonstrate what they hope is true (i.e., my new treatment is better than yours). The reason why these wrong questions are often chased (besides business reasons) is because very few people look for signals about interesting and non-obvious uses of treatments. For example, in a trial for a glaucoma drug, you notice that people’s eyelashes start to grow. Enter Latisse. If you went to the board of your company to ask for funding for this trial without having a prior indication that it might work, you’d be fired on the spot. However, armed with the signal from your glaucoma trial and this odd side effect, you get the funding and send product on its way to hundreds of millions in annual sales.

Of course, many of these signals are simply happy accidents, but they could be more formalized if we looked in the right places. These signals are what we need to shape a lot more of the trials that are out there. It’ll save a lot of needlessly wasted research dollars. Of course, I’ve made it all sound pretty simple. Not everyone can be as fortunate as Allergan was with Latisse. Most of the time, you have to dig a little deeper to find something worth pursuing. Because this might take a lot of work, it’s not done as often as it should be.

Enter CureTogether. In their own words: “CureTogether helps people anonymously track and compare health data, to better understand their bodies, make more informed treatment decisions and contribute data to research.” The last point there is the one I’m most interested in. Here’s how it works: you share a condition you have, it’s severity and how it affects you. You also share what treatments you’ve tried and how effective they’ve been. The site encourages you to share all the medical conditions that affect you. It’s a really simple process to add in all this information. They don’t ask for too much or too little. After you input all of your conditions and treatments (anonymously if you choose) and say how effective they are…then it gets interesting.

I’ve written about CureTogether before in a post called “Can Social Media Improve Your Health and Save Your Life?” For those who thought (think) that’s a bit of an overpromise, don’t be too sure. What CureTogether’s data can do is give us all the signals we need to figure out new uses of treatments that we might not have ever considered. In theory, CureTogether has the potential to detect the types of things seen in the Latisse example from earlier. Moreover, beyond helping show which treatments are most effective, it can also show which are not at all effective.

In their most recent data release, CureTogether did something different. They looked at treatments for depression and figured out not only which were most effective, but also which were most popular among its users. This yields an interesting set of data. You get to see which treatments are being overused and which are being underused. No major, expensive trial necessary. Once you have this level of data, you could expand to a full-scale clinical trial for a definitive conclusion, but you’d definitely be doing a much different trial that what you might have done without this data.

For this research, CureTogether took a look at all the data from all their members reporting depression as one of their conditions. The data represented almost two years of data from close to 1,000 patients. By comparing the most common and most effective treatments reported by these members, they came up with this interesting infographic:

[If you want more details on the chart or how the data was derived

check out the post from CureTogether. CureTogether also generously provided me the raw data that this chart was derived from. You can  download it here in Excel format: CureTogether Depression Data Excel (336).]

What this shows is that some of the most common treatments for depression aren’t necessarily the most effective and some of the least used (and non-pharma) are among the most effective. For starters, the most effective treatment was also the most popular…and it wasn’t a pharma product. It was exercise. The least effective treatment was a pharma product, Trazodone (an early and rarely used treatment for depression…at best). But, close on the heels of Trazodone in terms low reported effectiveness were Paxil and Prozac. We know these drugs don’t work for everyone and they were among the least effective treatments in this data set. Of course, the data isn’t perfect because “SSRIs” (a class of drugs to which Paxil and Prozac both belong) were among the most effective treatments in the study. [NoteYou'll have to review the Excel spreadsheet to see the numbers for every treatment, as they aren't in the infographic for some treatments.]

(BTW: Interesting timing…check out this recent story about a doctor moving away from drugs for depression in this recent New York Times article.)

Now, as I said before, the point of this isn’t to say definitively which treatments are the best, but to look for signals that tell us where to look for things that might tell us something new that we can study. In this case, the treatments that fall into the category of “Surprisingly Effective” (highly effective, but less popular) according to Curetogether were personal growth workshops, light therapy, massage therapy, and Cymbalta. Of course, the one that intrigued me the most was light therapy. I’ve never even heard of that…at least not for depression. I’ve heard of it for neonatal jaundice having had a friend who’s child was prescribed…well…light…to treat this condition. It seems odd, but it’s what works. Apparently, it’s also been used to treat acne and a few other conditions, but depression?

Under our current treatment investigation process, we’d have to look through the acne studies searching for some notion that there’s another effect of this treatment on another condition. Usually, it would be a wild goose chase. However, having data like CureTogether’s eliminates the goose chase and instead generates the signals for you.

Okay, here comes the part where I get all the negative comments and blog posts saying I’m delusional, so I’ll add in a caveat or two. First, I’m not suggesting that people make decisions about their treatment without a physician. Nor am I saying that clinical trials provide no value and that the statistical rigor is not important (I’m a Molecular Biology guy by training, you know). I am saying that there might be a better way to do what we’re doing now. Caveat over.

I freaked out a lot of people in my posts The Best Pharma Products According to Patients and 10 Healthcare Dinosaurs Digital Technology Will Make Extinct. For the former, John Mack took aim in his post, Crowdsourcing v. Science and for the latter countless people tweeted or emailed me that they loved the post, but weren’t too sure about #10: “Healthcare Privacy.” I don’t think I sold many people on the idea that privacy when it comes to healthcare will be dead in the next 25 years (probably sooner). However, it’s already happening and here’s the question for you: how much of your personal information would you give up in order to find a better treatment for your disease?Probably not much if you were looking for a better fix for your allergies. Probably everything if you were looking for a treatment for a terminal illness.

Before I move on, I’d like to tell you about this crazy new website I found. It’s called Six Degrees.

Here’s what Six Degrees wants you to do. You join up and then start sharing things about yourself. You post pictures of yourself, friends, and family. You tell everyone about links you’ve found, where you had dinner last night, what music you’re listening to, and who you think is going to win Dancing with the Stars. They want you to then find your friends on the service and connect with them, so that your friends can always know what you’re up to.

Crazy, right?

Who in their right mind would do this?

Of course, when Six Degrees was introduced in 1996, the answer was “no one,” which is why it folded in 2000. You’ve probably picked up on my sarcasm by now and realize that what Six Degrees asked people to do and what we found so improbable, silly, and intrusive in 1996 is exactly what 400 million of us now do everyday on Facebook.

So, we’ve already given up some of our privacy. Granted, it’s to our “friends” (real or online ones), but many share everything with the world (whether they know it or not…check your privacy settings on Facebook). For most of us, it’s common practice, but it’s likely that you would have thought that Six Degrees was ridiculous 15 years ago had you known about it and likely would have predicted that no one would ever share this kind of private information with anyone. And, yet…here we are.

CureTogether is a glimpse into the future. I’m hoping they don’t go the way of Six Degrees because they are a little ahead of their time, but time will tell. When it comes to this depression study, CureTogether’s data comes from just 944 patients. Imagine instead if this was 944,ooo. What would we know then? The problem is that there aren’t 944,000 willing participants because people aren’t sure of the value opposite what they give away.

What if I told you that if you were willing to track your condition over time and share it openly with the public that I could find you a better option for your treatment? How much would you be willing to share with the world? If you’re like me, the more serious my disease and the more definitive options you could give me (i.e., tell me for sure that something will work), the more I’d be willing to share.

I know…it sounds crazy, right? Well, this is already happening everyday in a very public way. While on CureTogether you can choose to be totally anonymous, on Patients Like Me people are doing just what I suggested, sharing highly detailed and private information about their health with strangers, all in an effort to figure out the best treatments for their disease. Here, of course, we’re not talking about the sniffles, we’re talking about life-threating (Parkinson’s) and, unfortunately, terminal diseases like ALS (Lou Gehrig’s Disease). Take a look at Patients Like Me if you never have before and you’ll be shocked to see how public people are about sharing very intimate healthcare details. They do it because they know that they’re getting very valuable information about their treatments, but also helping others.

Or, take a site like TuDiabetes. In this incredibly vibrant diabetes community, you have a ton of people sharing every detail about their treatment and struggles with diabetes. In public. With their real name. In sometimes embarrassing levels of detail. Why? Because they know that they’re going to get better advice and guidance from others if they share more detail. And, again, they know that they’ll be helping others.

Make no mistake, sites (and the technology behind them) such as CureTogether, Patients Like Me, and even TuDiabetes will play a major role in how healthcare is delivered in the future. I look to these sites as the place where all of our rigorous and expensive research can begin. For pharma companies, it should be impossible to ignore these communities and their data. It represents a chance to find out more about their products and where they work well (and where they don’t) and possibly where to find the next breakthrough. For example, CureTogether may use its data to show that a certain drug’s effectiveness increases dramatically when paired with meditation. No pharma company would think to do that trial on its own and yet, shouldn’t they want to know this? These communities have the potential to generate the signals that pharma labs search for years to find. While it’s taken years for CureTogether to get enough people to make their latest analysis robust, the calculations take seconds.

I might suggest that both patients and pharma companies ignore these new technologies and trends at your own peril. There’s information out there that can help both groups. Pharma companies should be encouraging people to join communities like CureTogether (who is more than happy to share their data with anyone who will share their findings from using it) to increase the chances that they find out something about their products. For patients, you might (emphasis on might) find something new to try or figure out why the medication you’re taking isn’t working well (maybe you’re taking it wrong or with another drug that decreases its effectiveness). For now, you can share as much or as little as you want, but the more you share, the better the results in most cases.

It’s up to you, but it is the future of healthcare research. It’s not for everyone and it’s not the holy grail (yet), but let’s not ignore it because it doesn’t seem to fit with how things are done today. Our best innovations have nothing to do with how things are done today. So, today’s assignment is simple: go to CureTogether, join, and input some information about yourself. You’ll be surprised what you find and might help come up with the next innovation to treat a major disease.

Original article at http://www.doseofdigital.com/2010/04/your-choice-your-privacy-your-life/