Consumer Health Success – PatientLikeMe 8/19/11

I wanted to remind readers to subscribe to HIStalk Mobile updates via the link at the top right. It’s the best way to stay current on posts and happenings.

From Denis Baker: “Re: Facebook/Pharma – are there other entities that have special privileges?” I couldn’t find any other entities with special Facebook privileges, though all companies can remove negative comments on Walls if they are constantly monitoring them. Reader Vicente Fernandez seemed to come to a similar conclusion: Denis – In the articles I’ve read about the Facebook/Pharma news the special privilege was described as ‘exclusive’ to certain Pharma companies and that some of them will still maintain the ability to block postings on their walls.”

Continuing the series on consumer health success, I’m excited to be writing about a company that I’ve heard a ton about but have never really looked into — PatientsLikeMe. Maybe I’m the only one that has heard it mentioned frequently, but it seems like almost every company pitch I’ve heard around chronic disease makes a comparison to PatientsLikeMe. That seems like a pretty good compliment for PatientsLikeMe, especially for companies that are trying to compete in the same area.

In terms of relevance to this series, PatientsLikeMe is all about chronic disease patient profiles, social connections, and educating patients about their conditions. I think of it as LinkedIn for chronic disease patients instead of professionals. The fact that they have over 100,000 members is pretty exciting as a potential real success in the chronic disease space.

All you need to sign up is basic information information about yourself. You can then create a health profile. One of the cooler features on the home page is that you can enter a condition, treatment, gender, and age range and it will spit out the public profiles that match that.  I looked for profiles that matched family members of mine and found tons of young female patients with epilepsy, but no older male patients with Type 1 diabetes. I also searched for middle-aged males with diabetes and hyperlipidemia, but the number of patients I found was still pretty low.


Something else I thought was a nice feature was the individual health profile maps, which are almost like mini-infographics that give a snapshot of a member’s health.  I’ve included one above from a public profile that I found.  It’s a nice visual way to show an individual’s health status, though it wasn’t intuitive enough for me to understand what all of it meant without digging deeper.


The site also provides a much larger visual health profile of a person’s conditions, treatments, and symptoms, all of which have information about the number of other members that have similar profiles or entries.  This is what a lot of people keep talking about in terms of making your health data pretty and understandable, though I wouldn’t call the profiles here actionable.

What I discovered quickly is that the majority of members, at least the public ones that I could see, all suffered from some very serious, and typically non-lifestyle related conditions. The large number of epileptic patients in contrast to low numbers of middle-aged diabetics hinted at that, but if you look deeper at the diabetics, you discover they are male patients that also have other conditions like breast cancer, ankylosing spondylitis, or major depressive disorder.

The Story

The types of conditions that are prevalent on PatientsLikeMe are not surprising if you look at the story behind it and its early days.  It was founded in 2004 by a three MIT engineers, two of whom had a brother who suffered and eventually passed away as a result of ALS (Lou Gehrig’s Disease). In the search for information about and support for their brother’s condition, they discovered a void and decided to try to address it.  If you’re familiar with ALS, and I’ve only seen it through patients and not family or friends, then you know how insanely sad it is to see young and healthy people quickly deteriorate in ways that are extremely hard to watch.  It’s always been hard for me to imagine how families cope with such extreme loss and hardship, but ALS sticks out to me as one of the most painful.

Not surprisingly, PatientsLikeMe has become the largest online community for ALS patients. From ALS, it expanded into other conditions, such as Parkinson’s, epilepsy, MS, organ transplantation, and others. In April of this year, PatientsLikeMe rebuilt the site and launched it for patients with any condition. Since then, it has expanded to over 500 conditions and 114,000 users, though not surprisingly, it is still heavily populated by users whose conditions allowed them to register before April.

How Do They Make Money?

Another thing I like about PatientsLikeMe is the message and the transparency. It relates back to the story behind the launch of the company. It calls itself a for-profit company, but not one with a "just for profit" mission.

One of the core values is transparency and I was surprised how transparent it is about making money. PatientsLikeMe sells member health data to companies to improve drugs, equipment, insurance, devices, and services for patients. The idea is that by sharing this information, treatment can be improved. The messages goes on to say, "Except for the restricted personal information you entered when registering for the site, you should expect that every piece of information you submit (even if it is not currently displayed) may be shared with our partners and any member of PatientsLikeMe, including other patients." No vagueness there.

Despite that and the current fears about selling or stealing patient data, the site has over 100,000 members willingly telling them how they are feeling and what they are taking. I think it just comes down to a matter of trust and PatientsLikeMe has done a phenomenal job of building trust in these disease communities. I also think the candid story behind the creation of the site goes a very long way to get trust and buy-in from consumers.

Where They Could Go?

PatientsLikeMe may try to expand from more (lumping here) congenital conditions to more chronic lifestyle conditions (diabetes, hyperlipidemia, CHF, hypertension, obesity, etc.), though again I’m not sure if it needs to. It is filling a niche and it is a pretty big niche with pharma partners signed on and paying. The conditions that are the biggest on the site require a lot of support both for patients and for their families, and PatientsLikeMe is doing a great job of providing them with a transparent platform and venue to connect, share, and find support.

If PatientsLikeMe was to look at expansion more aggressively, maybe it would look to an integrator like MedApps or perhaps even RunKeeper to pull in glucose, weight, blood pressure, and other relevant home-based parameters. PatientsLikeMe is a great venue to connect people and engage them in a dialogue about health, treatments, and symptoms. I say aggressively because PatientsLikeMe is open to all conditions, so nobody is stopping Type 2 diabetics from joining, and in fact, it has over 1,000 members who are Type 2 diabetics.


On this front, PatientsLikeMe is testing a mobile site, InstantMe, which I assume it will eventually convert from a mobile app to a native app. The app allows you to log basic symptoms and look at them over time.

I in no way want to come off as disappointed in what I found in PatientsLikeMe. I think it teaches a lot of lessons and has had a lot of success directly targeting consumers with health information and connections. That is probably more than all of the other sites out there that claim to be doing similar things. If nothing else, you should be impressed that it is a successful company collecting health data directly from consumers and openly selling that health data to pharma and insurance. That’s a lot of trust.

Travis Good is an MD/MBA and is involved with health IT startups.

  • Love that you are doing some objective reviews of many of the sites and products we’ve heard of. For PatientsLikeMe, I’d just point out that it is indeed built around a special type of disease type:
    1. The pts are very involved in their care – as the disease is either killing them (eg ALS) or making their life really hard (eg Epilepsy); 2. The disease is not well represented elsewhere – they are usually niche or orphan type diseases, as compared to things like DM, Htn and Heart disease.

    The result is that instead of trying to make just a generic community around a certain disease (which can make sense for a huge disease like DM), they are able to create specific functionality that can help the types of diseases on which they focus. For example, their classic case was showing whether a certain drug (Lithium) helped in ALS. There was speculation and some tiny trials. They took the power of their virtual network, and the discrete data they were collecting (meds taking, how they felt) and found that it didn’t really help… and patients trusted this more than the pharm-based studies because this was clearly patient based, real world, real time stuff. More info:

    Very, very cool stuff you’d never find on a WebMD community, and shows the power of a PHR/social network/data analytics engine IN THE RIGHT SETTING… and the key is they were smart to find the right setting. I don’t know if they will be able to easily expand outside that setting – will Diabetics ever give the intense level of data required? My hunch is it would only be a few – there is a big difference in motivation when you are simply dealing with a long-standing disease vs. knowing you might die from it in the next year.

  • denis baker

    Travis – mobility apps remind me of apps on Windows V3.0 – there is no communication between them, that I am aware. (e.g. passing log on data on to the next app you access like CCOW in another world) They obviously interact with whatever platform OS they are running on, but not each other. Is there any discussion or development around this? Thanks

↑ Back to top

Founding Sponsors

Platinum Sponsors