Can Social Healthcare Replace Clinical Trials?

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Every day, data is lost between the clinician-patient interaction. Given the fact that physicians under report over 50% of the symptoms and side effects their patients experience, this is a significant amount of information. This is data that could otherwise be used to formulate new pharmaceutical drugs or design innovative medical devices. In this interview with Ben Heywood, we learn how PatientsLikeMe.com is creating a new medium for clinical trials by crowdsourcing healthcare data from their community of patients.

PatientsLikeMe was co-founded in 2004 by three MIT engineers: brothers Benjamin and James Heywood and longtime friend Jeff Cole. Five years earlier, their brother and friend Stephen Heywood was diagnosed with ALS (Lou Gehrig’s disease) at the age of 29. The Heywood family soon began searching the world over for ideas that would extend and improve Stephen’s life. Inspired by Stephen’s experiences, the co-founders and team conceptualized and built a health data-sharing platform that potentially can transform the way patients manage their own conditions, change the way industry conducts research, and improve patient care.

Interview Highlights with Ben Heywood

  • What is PatientsLikeMe.com?
  • Why do patients openly share their health status through PatientsLikeMe.com and what do they hope to gain in return?
  • How is the medical community responding to clinical data from PatientsLikeMe?
  • The unique business model of PatientsLikeMe.com.
  • The short and long term vision for PatientsLikeMe and the future impact of social healthcare.
  • What has Ben learned since the inception of PatientsLikeMe?
  • And much more!

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4) Read the following transcripts from my interview with Ben Heywood.  Also, feel free to download the transcripts by clicking here.

Who is Ben Heywood?

Benjamin Heywood has served as the President and Director of PatientsLikeMe since its inception in 2004. His professional experience spans a diverse set of operational areas including successful ventures in the medical device industry, the entertainment industry, and in speculative residential real estate development. After graduating from MIT, Heywood moved to Silicon Valley to work for Target Therapeutics, the leading designer and manufacturer of microcatheter-based products for the treatment of stroke. After significant involvement in both manufacturing and product design, he eventually moved into a business development role until Boston Scientific acquired the company. Heywood earned his Bachelor’s degree in Mechanical Engineering from MIT and received his MBA from the UCLA Anderson Graduate School of Management.

Read the Interview with Ben Heywood

Hello everyone.  It’s Scott Nelson, and welcome to Medsider, home of the free personal medical device MBA.  Every day data is lost between the clinician-patient interaction.  Given the fact that physicians underreport over 50% of the symptoms and side effects their patients experience, this is a significant amount of information.  This is data that could otherwise be used to formulate new pharmaceutical drugs or design innovative medical devices.  In this interview with Ben Heywood, we learn how patientslikeme.com is creating a new medium for clinical trials by crowdsourcing healthcare data from their community of patients.  Here are some of the things that we’re going to learn in this interview with Ben Heywood, the President and Director of PatientsLikeMe:  What exactly is patientslikeme.com?  Why do patients openly share their health status through PatientsLikeMe and what do they hope to gain in return?  How is the medical community responding to clinical data from PatientsLikeMe?  The unique business model of patientslikeme.com. as well as the short- and long-term vision for PatientsLikeMe and the future impact of social healthcare.  We’re of course going to dig in to a lot more in this interview with Ben, but before we get started I have to give some attention to the sponsor of this program, Covasc, and let me quickly mention, if you’re in the audience and interested in the possibility of sponsoring Medsider, go to medsider.com/sponsor and you can learn a little bit more about the unique advantages of becoming a Medsider sponsor.  Again, that’s medsider.com/sponsor.  Okay, so on to the sponsor of this particular program, Covasc.  The guys over at Covasc are doing some interesting things as it relates to launching and selling medical devices within the vascular arena.  You see, if you’re a medical device company, you probably realize that paying direct reps is often worth it but definitely comes at a very high cost – big salary, company car, expensive insurance, etc., etc.  Well, Covasc is creating something different.  They have a unique network of affiliates that don’t require salaries or cars.  These affiliates excel clinically and have existing physician relationships at the local level.  The end result?  Increased market penetration, less cost and higher margins.  Check out covasc.com if you’re interested.  That’s C-O- V as in  Victor- A- S- C dot com, covasc.com.  And if you’re interested in joining the Covasc network of affiliates on the sales side, go to the same website, covasc.com, for more information.  Now, here’s your program.

Scott Nelson:    Hello, everyone.  It’s Scott Nelson, and welcome to another edition of Medsider, home of the free personal medical device MBA, and on today’s call we have Ben Heywood, the cofounder of PatientsLikeMe.  So welcome to the call, Ben.  Appreciate you coming on.

Ben Heywood:  Hey thanks, Scott.  Really happy to be here.

Scott Nelson:    Yeah, excellent.  So I want to definitely dig in, but I think most of the audience may have heard a little bit of something about PatientsLikeMe, but can you provide maybe a 30,000-foot aerial shot of your company, PatientsLikeMe, just so we can get a little bit of a background?

Ben Heywood:  Yeah, no, absolutely.  So, what we do in PatientsLikeMe is we’ve built an online community for patients to share, find and learn from other patients like them, and what’s unique about what we’re doing is that we allow patients with specific illnesses, typically chronic significant illnesses, to sort of share detailed information about what they’re doing, and it’s not just in a narrative form but it’s in a structured patient reported outcome format around the primary outcomes of their illness, treatments and symptoms but down to a very detailed level.  So, if you come into this site and you’re a man with MS who’s 35, taking Copaxone and having challenges with bladder issues, you actually can find patients like them with those criteria on the site, and then you can engage with them, learn from them, see how they’re doing, take a look at their data and their medical information and history, and really understand how you’re doing in the context of other people like you.

Scott Nelson:    Okay.  Okay.  And that’s a great overview, but before we dig in to kind of the nuts and bolts, can you give a little bit of a background as to how PatientsLikeMe actually started?  Because you have a personal story as well to kind of…

Ben Heywood:  Yeah, absolutely, Scott.  I mean, we originally started PatientsLikeMe out of sort of a need of our family.  I grew up with three brothers and unfortunately one of them was diagnosed with Lou Gehrig’s disease back in 1999, and our family did two things.  One is, my other brother Jamie started a nonprofit biotech that’s still going called the ALS Therapy Development Institute.  And then, about five years later, we actually started PatientsLikeMe with myself, Jamie and a good friend, Jeff Cole, who built the original site.

And the goal really was to take the knowledge that we knew was captured among all the patients with this specific illness and sort of use the wisdom of crowds, use the Internet and the scale of the Internet to collect all the information you would want about that disease, so what everyone is trying, how everyone is doing, symptom management, side effect management, all the things that you really deal with on a day-to-day life but don’t necessarily get the answers from the traditional medical community either due to the lack of time and engagement with providers or due to just the fact that there aren’t actually answers, there isn’t evidence or data around the number of the decisions that a patient has to make on a day-to-day basis.

Scott Nelson:    Okay.

Ben Heywood:  And so…yup.

Scott Nelson:    No, go ahead.

Ben Heywood:  No, no.  So absolutely.  So we were really personally driven when we started in ALS, we launched in 2005, and since then we actually get about 10% of the newly diagnosed ALS patients on our site today.

Scott Nelson:    Wow.

Ben Heywood:  And we have grown now to have over 115,000 patients on the site broadly with our most significant penetration in a handful of diseases like MS where we have 5% of the US population, Parkinson’s, depression, fibromyalgia, and others, and just recently in April we opened up the site to any person with any condition.

Scott Nelson:    Okay, so initially you were limiting it to certain conditions and now you’ve kind of fully opened it up.

Ben Heywood:  Absolutely.  We opened it up in April, and anyone with any condition can come and share their experiences around their symptoms and their treatments, and then we continue to add deep measuring capabilities on top of those illnesses.

Scott Nelson:    Okay.  And so I presume that most of those 100,000-plus patients that are on the site right now probably—is it somewhat limited to chronic diseases, and do you see that, obviously back in April since you’ve opened it up, do you see that opening up to not just chronic diseases?  Correct?

Ben Heywood:  Yeah, I mean, I think the site lends itself to sort of significant chronic illnesses, but that represents a huge swath of the healthcare spectrum, and in our estimation about a third of healthcare expenditures in the country, so that’s somewhere between 700 and 800 billion dollars a year are spent on chronic and significant illness, and over 90 million Americans are probably affected by illnesses that I think are best suited for our site.

Scott Nelson:    Okay.  And so you’re a for-profit company, and I noticed on your website, I like that tagline, kind of a for-profit company with a not-for-profit mission, and I think anyone that’s been to your site can probably relate to that.  So what is your vision for the average patient that comes to PatientsLikeMe and begins to open up and share their data?  Can you sum that up to some…?

Ben Heywood:  Yeah.  Yeah, no, absolutely.  So, I mean, first and foremost we’re trying to help patients answer the question, what we call our medical framework, “Given my status, what’s the best outcome I could hope to achieve and how do I get there?”  And so what that really means is first we have to help patients understand how they’re doing, and I think one of the things about our system with the data reflected back is they get to understand how they’re doing relative to everyone else.  And then, what’s the best outcome I could hope to achieve?  Just starting to give them insight into the perspective of all the other patients and how they’re doing so they can start to get a sense of what’s possible.  I think they don’t always know what the range of various outcomes can be for both symptom management or primary disease management.  And then lastly, how do I get there?  So you start to see what everyone is trying, and then how they’re doing on those treatments.  So that’s our first goal, is to really answer that for patients.

A secondary effect of the site, and this is part of the business model, I think is that we’re helping patients actually actively engage and become part of the research establishment.  And so we work with partners on the pharma side around the data on our side and doing clinical research on top of the data, and then we also do academic collaborations in a similar fashion, and I think what’s different and unique is that this is a platform where patients are coming together but they’re actually sort of volunteering their data and actually themselves to be part of a larger research effort, and I think that’s a unique endeavor for them.

Scott Nelson:    Okay.  And that provides actually a nice segue because if I was talking about, say, one of my colleagues or one of my buddies about PatientsLikeMe and they had never heard of it, I would almost describe it as like a Facebook specific to healthcare or patients with various illnesses, but it’s much more than that because there’s a lot of data.  I guess that’s an understatement [laughs] to say the least.  But speak to the clinical trial aspect because I guess it seemed like the first one when I first started hearing about it was the lithium for ALS.

Ben Heywood:  Yeah, no, absolutely.  So, a couple of things.  One is that, yeah, we certainly get the moniker of sort of Facebook for health…

Scott Nelson:    Right.

Ben Heywood:  …and I think that’s a useful thing in terms of evoking kind of the consumer facings version of our site.  I think, as you mentioned, yeah, it really is a unique research platform with really detailed structure to health information.  It’s actually not in our minds captured anywhere else in healthcare.  So, even if you look at like claims data or EHR, the numbers are potentially much larger than our numbers.  You know, they don’t really have the rich phenotypic data about patients that they’re sharing on our site, so think about the depression patients.  We really characterize a depression patient around lots of attributes whether it’s, you know, you have compulsion, mania, depression, physical somatization of the symptoms, I mean really detailed information that really isn’t contained elsewhere.

And certainly from I think a research standpoint, this is a great way to engage patients and understand how these diseases are manifesting themselves in the real world with real patients doing real interventions and what is their reaction and understanding both from a clinical standpoint and also from a perceived value [00:11:39] standpoint I think is really valuable for the device and pharma industry.

Scott Nelson:    Okay.  Yup, absolutely.  And so how is this being received amongst the healthcare providers in the healthcare setting?  Do they like it?  Do they not?  I presume people fall probably on both sides of the fence.

Ben Heywood:  Yeah, absolutely.  I mean, obviously there’s been a bit of an evolution.  I mean we started basically around the same time as Facebook, so this idea of sharing anything was kind of scary and we often got the question, “You’re going to tell patients how they’re doing?” like that was sort of the response from providers.  I think obviously we’ve come a long way in the last seven years.  I think there’s much more comfort with societal sharing even down to the medical level, which I think is maybe one of the last areas that have been challenging for people to let go of.  I think providers still fall [00:012:31] a little bit to two camps, but we do work hard.  We understand that the patient doesn’t make any of these decisions alone and that they’re working with their providers do the best thing possible, and I think that this is a real tool to enhance that conversation and enhance that relationship.

One of the simple ways we do that today is we have what’s called a doctor visit sheet, which allows a patient to print out their profile, and so when they come in to the doctor they actually have a really detailed record of how they’ve done over the last year or two years of the course of their whole illness.  You know, if you think about it with these chronic illnesses, you might spend two hours a year with a doctor but you’re managing your disease for 9800 hours more offline.

Scott Nelson:    Right.

Ben Heywood:  And so yeah, there is a real opportunity to enhance that relationship but you need to both do care offline as well as enhancing and making the best decisions in the room with your clinician.

Scott Nelson:    To that point, some of the feedback that you’re receiving from patients that have utilized PatientsLikeMe, and I didn’t think about this before but this is giving them, almost like forcing them to track what they’re doing to a greater degree than maybe they would have previously.

Ben Heywood:  Yeah, no, absolutely.  I think there’s definitely an element of coming on the site and starting to understand and use it in getting insights from sharing this data, and I think, yeah, I mean, clearly when an individual tracks their wellness or illness in this case, they have a much better chance of being able to improve both by themselves with a peer setting like PatientsLikeMe and with their provider, and I think we make it easy and fun as best as possible to do that on the site.  And then, having the social component to it makes it so you have more and more reasons not just for yourself, you understand that your information is helping others as well.

Scott Nelson:    Okay.  There are obviously a lot of upsides.  Are there any potential negatives?  I mean, perhaps maybe the better way to rephrase that question is, what are the common objections that you’re hearing from the medical community in terms of using this data from a research standpoint?

Ben Heywood:  Yeah, look, there are a couple of ones.  Some I think are more red herring and others are more real.  I think you often get, you know, “What if you get bad information on the site?” which people get about the Internet, too, and you know we’re pretty explicit with our users who say, “Are there risks associated with using this site?” and we say, “You know, we don’t know. You could in theory.  If your employer or your insurance company came on the site and found out who you were, you could get denied care based on something on the site.”  That’s a theoretical possibility.  We haven’t seen that yet, and we really feel and I think our users often feel that the benefits significantly outweigh any risks.  So that’s one common objection but again, we haven’t really seen it manifest itself in real life.

The other one is around the research angle.  I mean, look, you still get a lot of objection both from researchers and clinicians who say, “Well, if it’s not clinically validated, then the data’s not meaningful.”  And I understand that objection and I think you certainly can look at that with our lens, but on one level that’s also sort of devaluing the opinion and the perspective of the patient.  There’s a great New England Journal of Medicine study that shows that doctors underreport by over 50% both symptoms and side effects reported by patients, and so yeah, clinician is a very good filter for this data and information and that’s one filter.  I think our site and the medical ontology that’s laid on top of our site is another filter, and I think they both have value.  Ours is always the same and consistent over time.  A physician has got great heuristic capabilities for interpreting the data and understanding it.

But I think ultimately healthcare is about the patient.  There’s nothing to treat without the patient.  There is not an understanding of what’s going on without the patient, and so getting a true understanding of what they value, how the disease is manifesting itself and the treatments and symptoms they’re experiencing is something that is really I think an opportunity to leverage up and change a lot of the way healthcare is done today.

Scott Nelson:    Yup.  There’s no doubt.  It’s almost like the PatientsLikeMe data is almost like a clinical trial in the real world [laughs], you know what I mean?

Ben Heywood:  Yup, absolutely.

Scott Nelson:    If you had to sum it up.  I know in doing some of the research for this interview, I read a—I can’t remember the actual title of it but I think it was a Forbes piece and I think it may have been what Silicon Valley doesn’t know about healthcare, something along those lines, but I think that, I can’t even remember the author who wrote it down, but he mentioned something about how most people in the tech world underestimate that healthcare is not as scientific as it may look, and if you’re in my shoes, being kind of behind the curtain if you will, a lot of the decisions that are made on a daily basis aren’t that scientific.  I mean, I think most providers would follow a general treatment algorithm but there are so many pieces of the puzzle, and I think it would seem like if you’re open to the idea that using data from PatientsLikeMe would be an obvious choice.

Ben Heywood:  Yeah, no, actually Scott, I couldn’t agree more.  I mean, I think—we actually just sponsored the MIT Hack-a-thon that was around healthcare, and I think the advice we gave upfront was really that you really have to question everything.  There are so few truths in healthcare, and when there is evidence, it often is a very narrow band of patients that that evidence truly applies to.  And I think that’s the challenge, is you go in and you’re thinking that this is an industry like others where the numbers mean something and there are well-defined norms and metrics around data, and the reality is that there’s so much less known than there is known in healthcare, and it’s hard to start from that standpoint but when you do you start to understand the value of data from a patient like on PatientsLikeMe or other sources of nontraditional data, but at the same time you should question our data the same way you would question your doctor’s advice or question a clinical trial that seems maybe too narrowly focused to have a broad meaning.  The reality is in medicine you should question everything.

Scott Nelson:    Mm-hmm.  Yeah, no doubt.  No doubt.

Ben Heywood:  Yeah, it’s unfortunate. [Laughs]

Scott Nelson:    [Laughs] No, I wholeheartedly agree.  Yeah, you’re right.  Unfortunately, most people don’t.  They almost take whatever messaging they receive from their physician as the absolute truth when in reality, oftentimes it’s a good opinion, but it is that.  It’s advice and it’s not the absolute truth.  So, I guess before we jump into the business model for PatientsLikeMe, I wanted to ask you, early on, in trying to introduce this data within kind of a clinical trial world, I have to think that had to be extremely challenging and it probably still is to this day but, I mean, can you speak to that at all, Ben?  I mean, some of the things that you went through and had to overcome early on in trying to get some traction for seeing some of this data adopted within the healthcare setting?

Ben Heywood:  Yeah, no, absolutely.  Look, I think with any new technology, and particularly in a scientific or measurement paradigm, what’s challenging for innovations in that space is that you’re often held to a higher standard than the previous technologies.  So, I mean if you take the example of double-blind controlled/randomized controlled trials, they’ve been around for a hundred years, right?

Scott Nelson:    Uh-huh.

Ben Heywood:  And we’re not replacing that evidence anytime soon or maybe ever, right?  But the reality is, you mentioned briefly earlier the lithium study, which I should talk a little bit about, but that was the first study of its kind performed on our site, and I think we have to understand that.  I mean, when you think about objections or other potential for this technology, you have to look back a hundred years for when the first trial was run, randomized controlled trial, that that’s the point we’re at.  Now, that being said, information technology has sped up the timeline for adoption and understanding, so I think we will see our methodology and our paradigm and our research platform really I think push the limit in terms of speed and ability to provide evidence.

Scott Nelson:    Mm-hmm.

Ben Heywood:  But we have to understand that we’re learning this together.  We’re learning it with our patients, we’re learning it with our pharma partners, we’re learning it with the researchers we work with.  What is the potential?  Where is this is strong?  Where is it weak?  Where can it replace current paradigms and where will it not replace current paradigms?  And that’s an ongoing learning process.  It’s not going to end anytime soon.

Scott Nelson:    Got it.  Very good.  Cool.  Let’s jump to the business model.  Right now, you currently partner with—I’ll just leave it at that as an open-ended question.  Can you briefly just give us an idea of the business model for PatientsLikeMe?  Because you are a for-profit company.

Ben Heywood:  Yup, absolutely.  So we have a number of services that we offer, primarily to the pharmaceutical industry, but there are a few other things that are just opening up today and even some that are going to come online next year.  So, with pharma, what we primarily do is we do data services, so we provide raw data from our site to answer specific questions for them, and then research and research services on top of that.  And those tend to focus on health economics and outcomes research, clinical research, patient-reported outcome development or other areas that we can help enhance their internal decision-making process today in terms of understanding the diseases in the patients that we have on our site in the real world.  That’s one angle.

Scott Nelson:    Okay.

Ben Heywood:  We also do clinical trial recruiting today, primarily for pharma or 100% for pharma at this point.  So, we actually just launched a partnership a few months ago with a company called BBK locally that’s one of the best global clinical trial recruiting companies, and we now have a product with them where we help franchise-level companies.  So, take [00:23:07] company that’s really investing in the disease space and has multiple trials coming up.  They can work with us and BBK to sort of recruit patients to our community, and then over time, as those trials come up, we can present those patients with that opportunity and see if they’re interested in those trials.  I think that has a component of getting to really engage patients before you need them and developing that relationship with them before you need them, and then if there’s an opportunity to partner on a trial, then we have patients in our system who might be more amenable to join a trial at that point in time.

Scott Nelson:    Okay.  Okay.

Ben Heywood:  Lastly, yeah, and just lastly, there are a few other areas we’re going into.  We have some content products, so they’re content widgets that we license out to health sites, you know, like the smaller WebMDs of the world, and we’re just coming online with our first version of that with one partner in the next month or two here, and that’s where we just license out our data as content and then they do what they do on their end with advertisers and other things, but it’s basically trying to open our system to make our data a little bit more ubiquitous around the web.

Scott Nelson:    Gotcha.  Okay.

Ben Heywood:  And then, sorry, just real quick, and lastly, we continue to talk to PBMs and payers and others in this space about thinking about this as a real engagement mechanism for them, and those are ongoing discussions around potential pilots to show that we can actually help them manage and engage with patients.

Scott Nelson:    Oh, okay, so that’s interesting.  So, like a large insurance company, for example, using some of this data to help in terms of preventative medicine to lower insurance cost, that kind of thing?

Ben Heywood:  Yeah, actually.

Scott Nelson:    Okay.

Ben Heywood:  I mean, again, a better understanding of what’s going on outside of the care provider environment.  I think really, really help them understand better how they can manage and engage in cost and providing better value I think is more the focus we have.  Also, actually, in the context of even thinking about reimbursement and other things, understanding the real-world value derived by patients is I think a pretty important data point…

Scott Nelson:    Right.

Ben Heywood:  …and we’re actively trying to figure out with payers where we can help and provide additional insight around that real-world value so they can make better reimbursement decisions.

Scott Nelson:    Gotcha.  Okay.  I guess that speaks to the power of your data in that big pharma companies, and I’m not sure if medical device companies at this point you’re partnering with at any point, but the payers and big pharma companies at least are seeing enough value in wanting access to this data.  That speaks to the value of it when you compare that to clinical trials. [Laughs]

Ben Heywood:  Yup.

Scott Nelson:    Interesting.  It’s not about that right now, but very cool.  But you don’t allow advertising on the site right now.

Ben Heywood:  No, we don’t allow any advertisement, and you know [00:26:17] clinical trials, I think, look, the reality is that clinical trials today determine the value that pharma can charge in the marketplace almost 100%.

Scott Nelson:    Mm-hmm.  Mm-hmm.

Ben Heywood:  But I think down the road everyone recognizes that that will be some small percentage of what determines the prices they can charge, the value derived in the marketplace, and there will be things like claims and [00:26:41] the NATHO Health Service through Nice, and other people using other data sources to control and determine the value that those products can derive in the marketplace, and I think what we do is help pharma understand today what that future might look like when it comes to fruition, which we all know is going to happen.

Scott Nelson:    Right.  Yeah.  Absolutely.  But no advertising, though.

Ben Heywood:  Zero advertising other than you could call Clinical Trial Awareness Advertising.  But other than that, no, and we don’t do any banner ads, we don’t do any search ads, we don’t do any advertising.

Scott Nelson:    And do you see that changing?  Because if I’m a medical device company or even a pharma company for that matter, it seems like—well, especially pharma companies, as much as they advertise on cable TV and whatnot, there seems like that would be, and I’m sure you’ve probably had a lot of interest in placing an advertisement for a certain drug or whatnot to a certain subset of the patients that are on the site, but do you see that changing at all in the future or are you going to kind of keep that off limits?

Ben Heywood:  No.  I think we’re pretty committed to no advertising.  I mean, I really think the challenge there is that if you’re talking to commercial people about advertising, you’re not actually thinking about this as a clinical research paradigm…

Scott Nelson:    Sure.

Ben Heywood:  …and I think we decided early on that that just wasn’t worth it and you really can’t mix them.

Scott Nelson:    Yeah.

Ben Heywood:  I mean, you know, what happens is you start to get to be like WebMD where it’s a little like you create these silly surveys that just target the drug that’s paying the highest dollar.  No, we don’t want to be in that business.  Our patients don’t want us to be in that business.

Scott Nelson:    Gotcha.  That’s cool.  That’s very cool.  And I guess a followup question to the whole business model aspect is, I guess, probably the whole foundation of it is getting patients not only to your site but actually to open up, and I’m sure that’s a huge threshold that a lot of patients aren’t willing to do.  How do you get them to open up?  Do you follow a certain process to sort of try to do some things to get patients to open up and share their information about their particular illness?

Ben Heywood:  I think you bring up a really good question.  You know, look, there’s 10% I think of the population that’s pretty comfortable sharing on our site, and on some level we primarily target those people.  You know, we ask a lot of our patients and the community asks a lot of the patients, and so it’s a high-barriered entry.  That being said, the value derived both for individual patients, and then I think in terms of the aggregate data and value of the community, is great because of that high hurdle.  So, we have a number of things we do to try and help encourage patients to share information for themselves and for the community with stuff like, you know, when we ask a question we try and reflect back their data in the context of everyone else, so call that “give something, get something,” and we try and understand and only ask the questions that are relevant to that patient so we try and keep it as tight as possible in terms of what we’re asking, why we’re asking it, etc.  But in general I think patients are using the site because they derive value, and if they’re not deriving value they stop using the site.

Scott Nelson:    Gotcha, and do you know primarily where most of these patients are finding out about PatientsLikeMe and how they’re first coming to the site?

Ben Heywood:  Yeah, I mean we have a pretty broad mix.  I mean, we do pretty well on the PR side so I think we get a fair number from PR.  We do some classic search engine marketing and search engine optimization, so we get some there.  We get some word-of-mouth and social stuff that we do on our side, and then because we do the clinical research and we do some outreach with some of our partners, we also have other avenues in that way.

Scott Nelson:    Gotcha.  Okay.  Okay.  And as we shoot towards kind of a conclusion, Ben, an easy question for me to ask would be, what does the future look like pertaining to services like PatientsLikeMe?  But I guess more particularly, do you have like, “this is where we want to be at in 30 years,” if you can even think that far out, versus “this is what we see happening in the next maybe 5 to 10?”

Ben Heywood:  Yeah, oh, [00:30:58] no, I think, look, you know, we have a vision where every clinical decision that’s made should be made about data like about PatientsLikeMe.

Scott Nelson:    Uh-huh.

Ben Heywood:  So, you know, as an individual patient, you should be making a decision based on all of the scientific knowledge that has been brought to bear to that decision, and then all of the other decisions that patients like you have made that can inform that decision.  So, if you think about it today, every day a doctor and a patient does an experiment to figure out what might work for that patient, and every day we don’t capture that data and it’s lost to the world and no one else learns from it, and that’s just a shame.  It’s almost a crime in some level.  And what we want to be is capturing all of that data, so when you have to make a decision you know what the best choices for a patient like you is based on all of the data that comes up for you.

And I see 30 years out, I mean, you know, if we accomplish what we want to accomplish, we feel like every decision should be flowing through the network so you’re decision can be best made in the context of everybody else.

Scott Nelson:    Okay.  That’s an awesome way to put it.  That’s a very simplified way to put it, and a great way to put it is, using that example you just used, every day a decision, you know, next steps between a patient and a physician are being made and that data is lost, and it can be just because I’m kind of a data junkie, but that’s a great way to really put that, you know, the long-term vision of PatientsLikeMe.  That’s cool.

Ben Heywood:  Mm-hmm.

Scott Nelson:    That’s good stuff.

Ben Heywood:  Thank you.

Scott Nelson:    And what about the short-term?  That’s an awesome long-term vision but the short-term, I mean, what’s on the immediate horizon for PatientsLikeMe as it pertains to kind of the healthcare setting?

Ben Heywood:  Yeah, no, I think, look, so we open up the architecture.  We spent the last year and a half really architecting it back and to allow us to be able to grow significantly, add conditions significantly, grow the medical ontology significantly.  Just to give you a sense of that, when we opened in April, we preceded it with about 300 conditions, and since then there have been over 700 additional conditions added by patients, so now we have over a thousand diseases represented on the site.  So that’s just one angle of that, but I think the real value in this is as a new form of what we’re calling an “open registry.”

Thinking about this, you know, I think if more and more people find the value and understand the value of registries, what I think is unique about what we’re doing in this space is that you have all of the diseases across all of the comorbidities.  So, our version of a registry is, you’re able to start to look at different groups in how they are similar and how they are different with different disease states, and because the ontology and the medical data structures are all the same, there’s a lot more power in your ability to understand and determine what’s important.

And this open registry concept allows for lots of things.  It allows for drug safety across the board.  It allows for REMS programs for pharma and device companies, so as they’re coming onto market and they want a volunteer registry, well it’s already there.  It exists in the ecosystem, and all they need to do is engage to get back the data and potentially go deeper around specific issues they care about.

And so, you know I think there’s a real opportunity here, and so in the next five years we see us getting 2 million patients easily, going multilingual so we can go a little bit more global, adding to the medical ontology so we’re measuring as richly all of the diseases on the site as we are today around the 30-plus diseases that we measure very, very well.  And so I think there’s just a huge opportunity as we grow here to become a richer and richer resource both for patients individually, patients as a whole, and then clinicians, pharma, nonprofits, and others you want to connect and attach to the network.

Scott Nelson:    Gotcha.  Okay.  Okay.  Very good, and really my concluding question is more an advice question.  You can probably do a whole other interview just on what you’ve learned in the last 10-plus years since starting PatientsLikeMe.  Has it been 10-plus years?

Ben Heywood:  No, it’s seven years.

Scott Nelson:    Seven years.  Seven years, okay.  Yeah, we could do a whole other interview on the challenges and what you’ve learned, but is there one or two pieces of advice that you could share with the audience of things that really stand out to you that you learned that have really stuck with you along the way?

Ben Heywood:  Yeah, I think.  I mean, there are two things.  One is, I think one challenge is healthcare is very hard.  I think people always say, “Well, if we can take money out of ATMs, why can’t we make data flow in healthcare?”  And I think the challenge there is that there really are no standards for data.  There is no understanding of what normal is.  They have no understanding of any baselines in healthcare.  And so that’s one of the things that we think we’re building, is a way of measuring real-world value of patient’s experiences in a way that can actually flow back into the system and make the market driven by value and not driven by cost or other things.

But I think to that end, I think the biggest lesson is, look, you know, it is about listening to patients.  I think ultimately, if we’re going to fix healthcare, we have to actually empower and engage patients in a way that they can take control of their healthcare, and I think the way to do that is to empower them with the tools about better understanding of their disease, better understanding of the treatments they’re taking, better understanding of why and what their doctor is engaging them around, and I think our site represents that in a very powerful way.  I think you’ll get hopefully others that are trying to do similar things that I think can empower and engage patients, but I think ultimately that’s what we need to do to improve our healthcare in this country, and I think that’s our first core value, and I think if we could get more and more people focusing on that, I think we’d be in a better space.

Scott Nelson:    Right, right.  No doubt.  I actually recently did an interview with ePatient Dave, Dave deBronkart…

Ben Heywood:  Yup.

Scott Nelson:    And then a couple of others, Hugo Campos, who is involved with an ICD user group, and then Bennet Dunlap who actually, his two children are type 1 diabetics.  Anyway, it was an amazing interview, and that’s one of my big takeaways, is how engaged and empowered they were as patients.  It’s like that’s amazing.  You know, I personally have so many and you maybe do as well, you know, relatives and friends that aren’t that way in regard to their illnesses.  They don’t really take the bull by the horns, to sound cliché, but anyway it was awesome to kind of talk with those guys and hear their story.  No, that’s good stuff.

Thanks a ton, Ben, and for those listening that want to learn more about PatientsLikeMe, they can obviously go to patientslikeme.com but there are so many, as I was doing research, there are so many cool aspects to your site and different outbound links that take you to like the TEDxTalks and the various presentations and whatnot.  Are there certain portions that you want to highlight for the audience?

Ben Heywood:  Well, no, I think go to the homepage and if you have a specific illness you can explore the treatments and symptoms that we have, the data on the site.  As you said, we have a number of videos that explain what we are and who we are and how we go about doing it.  But you know, I think ultimately if you’re suffering from an illness that you want help from others, join the site, log on and start sharing, and I think you’ll find the words and the knowledge you gain can really impact your life.

Scott Nelson:    Yup.  Cool.  So it’s www.patientslikeme.com, like patients, P-A-T-I-E-N-T-S like me dot com, patientslikeme.com.  So, I encourage everyone to go check that out for sure.  Ben we’ll have you hold on the line real quick, but thanks a ton again for coming on.  Really appreciate it.

Ben Heywood:  No, I appreciate it.  Thanks for the talk, Scott.

Scott Nelson:    And thanks everyone for listening.  Until next time.  Take care.   (Music Plays)




 

About Scott Nelson

Medtech enthusiast, ambitious doer, and intellectually curious. Scott has worked for some of the largest medical device companies in the world including Covidien, Boston Scientific, and …. Learn more

Comments

  1. Amazing site. Patients need an interactive mode of communication with their doctors. In the current world patients need to be supplied with health information as helps to bring traffic.

    Erick Kinuthia
    Team MDwebpro

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  1. [...] Can Social Healthcare Replace Clinical Trials? [...]

  2. [...] other as amazing information resources and sources of moral support. She makes a brief mention of PatientsLikeMe (arguably the internet’s most-hyped patient community) and of DailyStrength (possibly the [...]

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