David Williams: This is David Williams, co-founder of MedPharma Partners and author of the Health Business blog. I’m a fan of PatientsLikeMe, a social networking site for patients with life changing illnesses, and I’ve blogged about it in the past. So, it was a real pleasure to sit down recently with the company’s co-founder and CEO, Ben Heywood, to get a firsthand account of their progress.
We talked about the differences between PatientsLikeMe and other Health 2.0 communities; the extension of the platform from the original focus on ALS to a broader set of conditions, the company’s openness philosophy, and how PatientsLikeMe intends to monetize its offering without alienating its users. Ben, thanks for being with me today.
Ben Heywood: Thanks, good to have you.
David: Ben, how is PatientsLikeMe different from other Health 2.0 communities? I’m thinking of communities like MedHelp or Daily Strength, and broader sorts of social networking platforms like Facebook.
Ben: Our biggest differentiation is really our focus on outcomes, so patients are really tracking detailed information about themselves and their disease over time. And then they are sharing that in a really open way within our community in a way that everyone can learn from. So, I’d say that the two primary things are the patient reported outcomes and the sharing and openness. It makes the value for the patients in terms of what they can learn from each other, and what they can learn from the community, much higher.
David: You have a fairly limited number of diseases that you are working with. Can you tell me about how you chose those and what they have in common?
Ben: Just as a point of background, my brother got diagnosed with Lou Gehrig’s Disease or ALS about eight years ago, and that’s why we got into this initially.
And so our first community was in ALS, but we always knew that this applied to what we call life changing illnesses, basically illnesses that become the primary focus of a patient’s life. So, we initially expanded into other neurodegenerative diseases like Parkinson’s and Multiple Sclerosis and we are in the process of launching HIV. This also applies to diseases like depression or anxiety or bipolar, where it really becomes a dominant focus.
David:How would that be different from what another Health 2.0 player would be doing? Would they still have a broader set of diseases, but it’s the ones that are life changing that have their most loyal users?
Ben: What we do is go a lot deeper in terms of the information patients are sharing in a way that the actual database that we are collecting of information about these patients and reflecting back for them to learn from, it’s just much more valuable in the management of the patient’s disease over time.
David: How many people do you have in each of your categories?
Ben: We don’t look at what we do as an eyeball play, but interestingly enough, in the diseases we have gone into, we do start to get a really large portion of the disease state. So, in ALS, our oldest community, we actually now have five percent of the U.S. population. We are collecting 10 percent of the newly diagnosed patients every month.
So, we actually are capturing a significant portion of the disease, and in MS, we are now up to 2500 patients and growing rapidly. I suspect that we will be somewhere north of 10,000 at the end of next year. PD is also growing, and HIV is in the very early stages right now.
David: What do people generally do when they are on the site, and how long do they spend on it, and how does that change from when they are newly diagnosed to when they become more expert?
Ben: Our patients are really engaged. The time on the site is very long. They do a number of things. They view other patient profiles, so they can learn from them. They find a ‘patient like me,’ and there are some really interesting stories about that. They learn from the collected treatment reports and symptom reports that we have, which is the aggregated data of all of our patients within the community, and then they share and answer questions in the forum.
So, there is an emotional support as well as helping with standards of care and how patients do the little things that help them with their disease.
David: When you say it’s not an eyeballs game, how do you think about the value of the network? We normally think about networks growing in value as they get larger. Is there some minimum efficient size; is there some minimum efficiency in terms of having a certain number of patients that are like one’s self; and does that top off and flatten out at some point?
Ben: We look at that in a number of ways. I think there is a core number of intense users that generate a lot of our data and information, and those are very important to us, the sort of expert patients or really highly engaged patients.
As we look at a new disease state, then we look at what the largest clinical trial is in that state, and we hope to surpass that significantly as an early milestone. In small diseases likeÂ ALS we looked at trying to get 10% of the disease population, and then next in even smaller diseases, potentially 10, 20, 30, even 50% if it’s a really small disease.
Then, in larger diseases, having something like one to 5% of the disease state means you really have a powerful set of information that can be shared with the patients and they can learn from, but also industry partners in a way that can really change how they look at treating the disease.
David: Is the site focused on patients from the US or from abroad or both? Or does it matter?
Ben: We are an English language site, so our primary audience is the US; our second largest is about 20% in the UK. We do have patients from over 40 countries, so obviously English agile patients in other countries are using our site, but we do primarily focus on the .S.
David: Can you tell me about who else is on the site besides patients? Are rules for other users set out explicitly or do they just blend in?
Ben: We encourage other users from the disease community, whether that’s caregivers of patients, which is a separate category, as well as physicians and clinical providers of all sorts, and just general guest researchers that have an interest in the disease, and they are all identified. Particularly with our guests, we expect full transparency in terms of who they are and what they are doing and what their purpose is.
To date we have really concentrated only on patients as an outreach, because we really fundamentally feel, if you solve the patient’s problem, all of the other constituents will come to the site, because the value of the information will be so high.
David: Any type of social group, whether it’s online or offline, tends to have some norms that develop and ways that behavior that’s outside of the norms is dealt with. Can you tell me about some of the issues that you have with the online forums and how you deal with them?
Ben: We’ve had a lot of success with a somewhat undermoderated site, and in fact it’s something that the patients really appreciate as they look at us relative to other forums where they are overmoderated and feel like their voice is squelched. We have a code of conduct. It’s a positive code of conduct about positive engagement in the site, and I think that really does set the tone in terms of what they are using it for.
There are a couple of interesting things that have happened just organically. One is about profiles. Patients who speak on the forum and sort of have an aggressive voice on the forum, who don’t fill out their profile tend to get pushed by the community to do that, because it becomes a validator of who they are, which is an incredibly powerful part of our model.
David: Are your users different from typical patients? If I were to look at an ALS patient who’s on PatientsLikeMe, would that patient be different from the characteristics of a typical ALS patient?
Ben: I would say yes and no. On one hand, our patients are probably younger than the average slightly, and obviously they are online, so have a little bit better means. But in terms of the distribution of the disease, we actually do a pretty good job matching up with the general population.
What’s interesting about patients in any given disease is that there’s different types of “expert” patients. There are those that know a lot about their disease; others that really know about managing day-to-day stuff; those that know a lot about research; those that just provide a lot of emotional support, and all of those are catered to and important within our community.
David: As you mentioned, these are serious life threatening, life changing diseases. In the case of ALS in particular, it tends to be progressive and people tend to die fairly soon after they are diagnosed. How does the community react to that, and how is it different than in the physical world, before people were able to connect?
Ben: ALS is the community where we have had to deal with death the most. Patients recognize it, they actually let us know when patients pass away, because they tend to know the network, and actually that’s an important piece of information we capture and then it becomes part of a patient’s profile. They do honor them in an organic way within the community, and I think what’s great about what we do is that we provide lasting meaning for that patient’s disease.
In the old offline community, that patient’s experience got lost to the world, and now that patient’s experience becomes a part of a greater whole, and in a knowledge base, that can actually really affect the course of someone else’s disease in the future, and I think that’s what’s very interesting about what we are doing.
David: Do you find that the patients or others have any particular downside to participating in this site? Is there anything they need to watch out for in terms of either addiction or obsession or anything like that, that might be an issue?
Ben: The biggest downside potentially for participating in our site is around privacy. We do have a very open model, where patients are sharing incredible amounts of information about themselves. I think what’s great is that patients understand that and we are very explicit and transparent about that, but they understand the value outweighs that risk.
I would say that’s the only one that we’ve really seen to date that could have any meaning; otherwise, I think patients get an amazing amount out of our site and we continue to get great emails and feedback about the value that patients get.
David: You mentioned openness, and one of the things that you espouse is what you call an “openness philosophy.” Can you tell me a little bit about what the openness philosophy is, and then how it’s applied to PatientsLikeMe?
Ben: We fundamentally believe that this sharing of health care information, particularly in the environment that we’ve created, can lead to greater change in any given disease state. One, on an individual basis for patients from learning from each other in terms of how to manage their disease, how to care with the day-to-day issues, how to deal with stuff that’s not always dealt with effectively through the clinical relationship, as well as enhancing the clinical relationship.
But we also think that this is one of the ways of breaking through the barriers of health care information in a way that we can create a data set that can be used by industry partners, non-profit researchers to further the knowledge base of any given disease state and hopefully improve treatments; both faster and better treatments over time.
David: I notice that you also have something called the “PatientsLikeMe Public Registry”, which sounds like an ALS initiative that you took over from somebody else. Can you tell me about that and how does that relate to the openness philosophy and privacy concerns?
Ben: That was something that we took over from a patient very early on. One of our patients, Bobby B, was very active in tracking patients online. He had a long list that he did in the forum, and we felt like it was an obvious extension of what we did.
In ALS, we allow patients to opt in to a public registry and that is actually the most explicit example of our openness, which is patients are opting in to have their full name, disease state, and some slight details about them open and outside the site, again, in a very explicit opt-in basis. We actually have about 70 percent of our ALS patients opting in to do that, and it’s just a very powerful example of what patients are willing to share if the value is right for them.
David: You started with ALS and you’ve expanded to a few other conditions. There’s been some discussion in the media and your own press release about potentially expanding the number of disease areas fairly dramatically. I’m wondering, how many diseases are there do you think that fit in to the same criteria that you talked about early on? What sort of changes do you think you’ll need to make to the site as you expand the number of disease areas?
Ben: I think this model applies to thousands of diseases, and I think the value proposition for different diseases is slightly different. So for a small orphan disease, the primary value for us is just finding a patient like me which in that case, is someone with my disease which is very hard to do offline.
But when you get into larger diseases ,even something like HIV, you need to start finding a patient like me in a more explicit way, someone who’s had a very similar clinical experience. We have a patient who’s had the disease for a long time and never been sick in HIV. He’s never had an infection and he’s interested in finding other patients like him who’ve never had an infection but had the disease for so long.
It’s really applicable to many, many diseases, and what will happen is that as we evolve into other diseases, it’ll slightly change the model and the platform in a way that makes it so it is more applicable. We’re working right now on an integrated mood community which is bipolar, anxiety, and depression. That really lends itself as a model to some of the other diseases like rheumatoid arthritis or chronic fatigue which is not an obvious connection, but in terms of our model, it really extends effectively into those diseases.
David: Do you expect that there will be communication across disease areas? In other words, PatientsLikeMe is pretty clear when you’re dealing with an ALS patient to find another similar ALS patient. But would an ALS patient have enough in common with a patient with depression or MS or Parkinson’s that there actually might be value in communicating across forums like that?
Ben: Yes. We’ve polled our patients relatively recently and over half of them indicated they would like to learn from other patients. I think as we grow, I think there’ll be a lot of interesting axes in which we can actually allow patients to appear in the other communities.
An ALS patient dealing with a wheelchair can learn from an MS patient dealing with a wheelchair although they probably have slightly different issues. But there is an opportunity to learn.
In our depression community, I think it’ll be really interesting for some caregivers to use that as a means to track how they’re doing in their disease and how being a caregiver for someone with something like ALS is affecting their mood and life.
David: PatientsLikeMe is a for profit company and you’re financed by a variety of investors. Can you tell me a little bit more about why it is a for profit company? What do the investors have in mind and what are they expecting to get out of their investments?
Ben: Very early on, we looked at whether to make this a not-for-profit or for-profit company, and we fundamentally felt that it most effectively scaled as a for-profit company and that we could get this tool out to many, many more patients as a for-profit entity. We have a great set of investors and they’re interested in many things. Obviously, first off they want to make money, as all investors should. But secondly, I think they’re really interested in how what we’re doing can really change the health care industry as a whole and how they can improve patients’ lives using this tool.
David: What’s the basis for generating revenue? Are there any issues as you pursue monetizing the site?
Ben: Our primary sources of revenue that we’re going after are pharmaceutical and medical device companies, and what we want to do is engage them on two levels. One is utilizing the anonymous aggregated individual data to further improve their research, finding patients that their treatments provide the most value to in the real world.
Then secondly, over the long haul, we actually want to engage the industry and patients in an effective dialog that can fundamentally affect the research, treatments, and biomarkers and such.
What’s great about it is they are obviously motivated to engage in this dialog, and when we’re looking at industry partners, we look at it from a patient’s perspective, what value does that engagement with that partner bring to our patients and our patient community? It goes to our fundamental philosophy of patients first.
David: What reaction have you had from physicians who are caring for patients? Do they view this positively or negatively? How advanced are they in thinking about how to integrate something like PatientsLikeMe into their practices?
Ben: In ALS, which has been our oldest community, it’s been a great evolution watching that. About a year and a half ago when we launched, it was sort of like, “Hmm, it’s interesting that patients are doing that. “We, over time, are engaging them through clinical research, conferences and other things. I think we now are at the point where they say, “Wow, this is a great tool for my patients to manage their outcomes over time.”
We would actually really like to see physicians engaging in the community and using this as a way of tracking patients between visits, potentially longer term, engaging them in a dialog with patients. We want this to be an open platform where anyone interested in the disease state, who can add value to the patients and the patient community, really engaging in that dialog.
David: You mentioned early on that you started PatientsLikeMe based on your brother, Stephen’s diagnosis with ALS. Can you tell me what you learned from him?
Ben: It’s interesting, I have two brothers; the one who had Lou Gehrig’s disease or ALS, and my other brother who’s one of the cofounders here. I think what’s interesting just from a PatientsLikeMe perspective, was early on we felt like we knew everything there was to know about ALS, as a family. We were highly engaged.
My brother ran a non-profit biotech doing drug discovery in ALS; he spoke to ALS patients all the time. What was fascinating about the site is how much we learned once we got going and how much we learned that we didn’t know. And what is so powerful about PatientsLikeMe is it’s almost you don’t even know what you don’t know yet, and that’s what’s fascinating as we uncover this.
But in terms of just life, my brother was a wonderful, wonderful brother who taught me too much to even talk about here, but just one is about being a caring, loving individual. He’s been an inspiration for me and for my team here and for many other patients, particularly ALS patients.
David: I’ve been speaking today with Ben Heywood, co-founder and CEO of PatientsLikeMe. Ben, thanks for your time today.
Ben: Thank you.January 23, 2008