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Winner of Amgen Patients | Choices | Empowerment Competition Emerging Star of HealthCare Engagement Award
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Dose of Digital 2

Can Social Media Improve Your Health and Save Your Life?

by Jonathan Richman

Regular readers of this blog know that while I talk a lot about social media here, I’m not necessarily sure it’s the cure for pharma marketing. At least, it’s not the cure in the way many marketers think about it. For many, social media represents yet another channel to promote their products. Nearly every pharma and healthcare company sponsored social media effort thus far feels as though it is brand focused instead of patient focused. That is, the primary focus is not to facilitate interaction between consumers and the brand or between consumers, it’s designed to advertise. Yes, there are exceptions, but generally, this is what it is. I won’t go into the reasons for it here, as I’d like to focus on something different: what social media could really mean to our health.

Based on everything in that last paragraph, perhaps it’s not surprising that the biggest innovations in healthcare social media come from companies that aren’t selling anything. One that I discovered a few months ago and have been watching closely is CureTogether. The folks at CureTogether describe their service like this: “CureTogether helps people anonymously track and compare health data, to better understand their bodies, make more informed treatment decisions and contribute data to research.” Sounds good, right? But do they really deliver this? Turns out they do.

I’d encourage you to check out their site and see how it works. Basically, 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. There’s a reason for this (more to come in a bit). 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, here’s where it gets interesting.

Earlier this week at the Mayo Clinic Transforming Healthcare Conference,  CureTogether released some of the first data related to their stated objective to “contribute data to research.” They showed that patients who report infertility are 1.9x more likely to report having asthma than patients who don’t report infertility.

Some more detail from their report: “This comes from an analysis of 324 patients. Within the 34 people reporting infertility, 13 (38%) reported having asthma (the remaining 21 out of 34 specifically said they did NOT have asthma). Within the 290 people reporting “no infertility”, 58 (20%) reported having asthma (the remaining 232 specifically reported NOT having asthma). This 38% vs. 20% relative risk is statistically significant, with a 95% confidence interval of 1.2 – 3.1.”

For those who are used to seeing clinical trial data or even those that hear reports of the latest breakthrough study on the evening news, this might sound all a little ho-hum. “So what?” you say. “They did a study that showed a link between  two conditions. There are studies like this all the time.” But that’s where you’re wrong. This study was completely done via the power of social media. It didn’t take years to get the funding or months for IRB approval. It was just done. It’s completely based on what users report on the site and a little bit (okay, a lot) of statistics work. Granted, this isn’t a randomized trial and the data is self-reported, so it might not be considered the be-all-end-all answer, but it certainly generates some interesting hypotheses.

What CureTogether does is really smart. It doesn’t rely on people to come up with theories to prove right or wrong in a trial. We’re not smart enough to think of every possible link or connection between diseases and treatments. Instead, a completely unbiased machine with no preconceived notions about what might work and what might not, pours through the data and finds connections we could never imagine based on the data it’s given.

“Sure, but can we really trust this. How do we know it’s accurate?” Well, the statistics tell us a lot, but there is one other thing. For this analysis, the seemingly unrelated conditions of infertility and asthma have already been investigated and a link has been shown in many other studies using completely different techniques. Again, from CureTogether:

“The importance of this finding is that using only self-reported data, we have confirmed the infertility-asthma association that has previously been explored only in clinical studies:

1. Asthma was found to be associated with irregular menstruation.

2. Asthma is higher in women with endometriosis (which also has a high correlation to infertility) than in the general population.

3. The more siblings you have, the less likely you are to have asthma.

4. A big cohort study in the UK found no link between fertility and allergy-related diseases but also said that with asthma in particular there was a different relationship to fertility than with eczema and hay fever.

Again, another smart twist. Find two conditions where a link has already been established and use it as a test to see how accurate your group really is. It turns out that it’s really accurate. What makes this even more remarkable is that, as of this writing, there are only 4,415 people who have signed up and shared their information. Imagine how powerful this becomes when there are 10 thousand or 10o thousand. The more people involved, the more sensitive the data becomes. Eventually, CureTogether will be able to do much more than find links between diseases. It will be able to identify which drugs are most effective for certain patients, which side effects are most common for specific people, and which combinations of treatments are most effective. It’s basically a crude, but potentially highly accurate, personalized medicine tool.

Isn’t this where pharma wants to go? Well, it’s happening already. How are you playing a role? Are you encouraging everyone who visits your brand sites to go to CureTogether and input their information? Are you calling CureTogether and asking how you can incorporate their survey and tracking tools right onto your site? Why not?

CureTogether is just the beginning. And, while this post seems a bit like an advertisement, I assure it’s not. When I see something special, I’m one loudest advocates you can find. This concept is something special. There are likely other resources like this. Patients Like Me is similar in many ways and allows you to compare your progress to others and see which drugs work best for certain people. In time, this type of analysis will be the standard. With electronic medical records becoming more mainstream along with the slow, but steady adoption of personal health records using platforms likeGoogle Health or Microsoft Health Vault, comparisons across a giant scale become possible. Imagine using millions of records each with an incredible amount of detail to do what CureTogehter. The findings would be stunning.

This brings me to my final point. When I shared my thoughts on the future of digital marketing in pharma a while ago, one of the things I said people would eventually do was opt in to share their personal health records in order to be matched with others who are very similar to themselves. A few people commented or contacted me saying that no one would give up their privacy like this. They’re wrong. People will IF they know that they’ll get something valuable in return. CureTogether is anonymous, so there are less privacy issues. However, take a look at Patients Like Me, you’ll find people sharing very intimate details about their health and personal lives including their real names and pictures. They do this because of the value they get from the service. They know that the more they share, the more they get back in the form of valuable comparative data that they can use to guide their medical treatments. When you bring real value, people will do an awful lot to get it.

How many people would be willing to give up their private information to you in exchange for what you offer?

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