Interview with MedHelp CEO, John de Souza (transcript)

This is a transcript of my podcast interview with MedHelp’s CEO, John de Souza.

David Williams: This is David Williams, co-founder of MedPharma Partners, and author of the Health Business Blog. I spoke today with John de Souza, CEO of MedHelp, a popular website where patients can post questions about their health and receive answers from leading doctors.

The service is advertising supported, and attracts about four million visitors a month. Although MedHelp fits into the Health 2.0 bucket, the company’s actually been around since 1994. John and I spoke about how patients use the site, why physicians and hospitals participate, and MedHelp’s plans for growth.

John, thanks for being with me today.

John de Souza: Thank you for having me.

David: John, tell me a little bit about the story behind MedHelp. The company’s not brand new, and I’m interested to hear how it’s evolved over time.

John: MedHelp has been around for a long time now. The company started back in 1994. It was actually started by two people, Cindy Thompson and Phil Garfinkel. Cindy, at the time, was searching for a lot of medical information. Her mother had been ill and they were unable to diagnose what exactly her condition was.

She went for several years before eventually she came across a physician who went to her and said, “You have systemic mastocytosis“, and was able to get her on medication. But in the process her body weight had dropped to about 70 lbs.

It was two years later that she met the doctor at the NIH and was able to get the right combination of drugs to help her improve her body weight. But unfortunately, at that point, she lost a lot of weight and wasn’t doing well, and then she passed away. But that drove a mission for Cindy to help people get to really good doctors.

Phil’s daughter, at the age of two, and right around the same time, was diagnosed with a malignant brain tumor. And two different brain surgeons came up and told him, “You’ve got to choose between different courses of action here. You need to tell us what to do.” And he wasn’t sure, and he was out trying to reach doctors for information to find out what’s the best course.

So the two of them got together. They met actually while they were searching for information and said, “Wouldn’t it be great to create a resource whereby people can go and find out the best doctors in the world and pose their questions to them?” I think a lot of us, being in large cities, forget that a lot of people don’t have access to really good doctors.

So they actually set this up back in 1994 with the mission to be the largest, most trusted health care community in the world. Largest, because they realized that for this to be useful for health care, you need to be able to deal with a lot of conditions.

No matter how rare your condition, it’s very important to you. And the only way you do that is by having a large number of people working with the best doctors.

David: And was the website similar to what it is today? Was it fundamentally the same sort of idea?

John: It started similar. There’s a lot more functionality now that incorporates a lot of new technologies. But the heart of it was similar back then. They said let’s go out and get the best doctors, make their questions available to users, and people can go and work with them.

So they’ve been working with a lot of these hospitals for over a decade now. And when you look at the hospitals, they’ve done a great job of going out and working with many of the top hospitals: Cleveland Clinic, Mass. General, University of Washington, Brigham & Women’s, and the list goes on.

David: And so it sounds like Cindy and Phil built the company up. Are they still active? And where did you come into the picture?

John: Yes, they’re very, very active. I think for a company to be really successful, you need a real passion. This was born out of a real need, and so they’re very active. They’re committed to this and keep on pushing it.

My interest in this has also been a personal journey. I was originally born in Ethiopia. I eventually came to the US to get an education and went to MIT.

I loved medicine, did medical robotics. And eventually for me, the highlight of my educational career was getting into Harvard Medical School. But at the time, I found out, being from Africa, that the US government required me to leave the US upon getting my medical degree.

They required me to go back to Africa. We had left during the revolution. I didn’t really have a place to go back to.

David: Right.

John: And so the only way for me to go through and do it was to go and get a green card, get my permanent residency and come back. That journey took me a long time. It took actually nearly 15 years to get it, and I never actually got my M.D.

I’ve always had this interest in medicine. So I actually got to know Cindy and Phil way back in 1995. I have a background in technology and startups, and was sort of advising them since 1995, and then got actively involved about a year and a half ago.

David: There are questions that are on the forums that patients submit, and then either individual doctors, or some doctors from these major medical centers that you described answer those questions. How does that work? And why is it that the doctors, or these medical institutions actually participate at MedHelp?

John: We spent a lot of time wondering do we pick questions and answer only selected questions. And in the end, we really believed that in health care, if you have a question, it means a lot to you.

Even though to somebody else, it’s not as significant as a different question, we decided that everybody who has a question needs to try to get it answered. So we go through and we answer most of the questions that come. It’s on a first come, first serve basis.

In terms of the institutions, I was actually delighted going in and speaking at institutions because a lot of them are looking for ways to reach out to the consumer. For them, this is a great way for them to say, “Look we’re looking for different ways to reach out. You have a large number of people.”

We have about 4.5 million that come to our site every month. So it’s a great way for them to do it, and not have to worry about interface, how do you build traffic, what do you do.

All that’s taken away from them. They inform us on what they do well, which is their medical specialty. And they get a tremendous amount of people that see the work they do.

In addition to responding to that one question, that one question answered gets viewed thousands of times by other people. For them, it’s a great amount of visibility, and it showcases what they do really well, which is helping people with medical questions.

David: I noticed that in addition to being able to raise the profile for some of these individual physicians and institutions, that in some cases, there’s a ‘Request an Appointment’ button on the form that allows a patient to actually click and request an in-person appointment.

Is that a popular service? Do people actually do that? And do they follow through, and cut and paste in the URL that refers to their specific discussion?

John: We’ve put that out there for a variety of reasons. They actually had a lot of people coming to us and asking us to coordinate meetings with the institutes we work with; so we’ve done that.

And after working with those institutes, they’ve actually gone out and set up these e-conference services to help deal with that traffic. We get both domestic people and international people who want to do it.

They also have, across almost all institutes, people who show up with print-outs from our site, and they say, “This is the doctor I want to see.” And when you think about it, what is unique about the experience you have on our site is that you have a chance to sit in on a doctor-patient interaction. You get a feeling for what kind of doctor this is, what sort of temperament he has, and does that work well with you.

Normally you don’t have that. Normally, when you go in to see a doctor, you don’t know what you’re in for. You don’t usually have much say. And so I think people really like it. They get very comfortable with the doctors.

And once they do and they build that rapport with the doctor, they want to go in and see that doctor. So it’s been very common for people to go in with a printout and say, look, this is exactly the doctor I want to see. I want to go on. And we get a lot of activity on that. A lot of people do click on that and we do send a lot of referrals back.

David: Well, it sounds very useful because I know that it’s often the case that when people go to these very esteemed institutions, traveling a long distance to get there, the service they receive is not always so good. They have to bring a lot of their own medical records, and you’ve got somebody taking a look at something for the first time. So to me it would make a lot of sense if somebody can actually continue the online discussion.

There are different types of forums on MedHelp. I notice you have some forums where it’s what we’ve been describing, where the patient’s asking a doctor a question. But then there are some other forums that are patient-to-patient forums, and then there are forums about pets.

But leaving the pets aside for a minute, what’s the difference between the doctor-patient forum and a patient-to-patient forum? Because I do notice on the doctor-patient forum, sometimes patients also comment, people who are not the original person asking the question, but somebody may offer some kind of a hint or a tip.

John: Yes, we do have different forums, and these serve the different needs you see out there. So the first one was for people to go and get access to these experts. And if you have a question that you have simply for a doctor, you go through the doctor-patient forum and ask the question there. Actually to step back, when you look at how people fish for information, often what they do, the first one is they want to go out there and they want to understand the disease, read general information.

But the second phase of that is they want something personalized. They now have a question specific to them and that’s when they will go to the doctor-patient forums, pose the question there, and get a response that’s tailored to what they need.

There are two other needs that we try to meet. One is the value of shared experiences. If you have a specific condition, you go through and see almost anything. You put it into search and you go through and find a large number of people who have very similar conditions. And you can read their questions, the responses, and you learn through that.

So the shared experience is very, very important and the patient-to-patient forums definitely help with that, but also they are used for support. As you’re going through it, sometimes all you need is for other people to help support you through the experience. And so you see a lot of that in the patient-to-patient forums as well.

Beyond just the forums, we also do have all the other community aspects. You do have people that create journals. You can go and see people, as they’re going through therapy for different illnesses, they’re keeping journals. So you can read their journals, you can see what they’re going through.

We do have a way for people to do messaging between each other. And we have a lot of those community aspects as well to help build a community. A lot of people just share their experiences and gain support.

David: And then on the doctor-patient ones, I was intrigued. I saw an example of a woman asking about congestive heart failure. And she said she’d had this, that, and the other test done. And she was asking the physician whether that could rule out CHF or if she had to look into it further. And the physician responded with some tests that the woman should ask her doctor about.

And then I thought it was interesting that a patient commented to say, hey, this sounds like it could possibly be sleep apnea, and you might want to check into that. And it seemed to me to be very valuable, because you had both the strict clinical answer and then you had a patient who may or may not have been right, but suggesting something that might short-cut somebody who might have been in a similar situation to someone like Cindy or Phil, actually trying to find the shortest path to what their actual diagnosis is.

John: It’s actually multi-leveled. The one which you are describing is a very common occurrence. We actually had this lady who wrote to us recently saying that she was having trouble with her pacemaker. And she kept on describing it to her local physician. The local physician said, I don’t think there’s anything wrong, you’re fine.

So through the online discussion she met another lady that was in a similar situation. The other lady said, at a certain point I switched to a dual-chamber pacemaker and it completely solved my issue. This lady then did get a change to a dual-chamber pacemaker and it completely resolved her issue as well.

So it is a common experience. It helps direct them. And often, depending on the type of physician you go through, this really provides them with a clue as to one more thing for them to check to see if it makes sense or not. But again from a physician’s perspective, according to a cardiac surgeon at the Cleveland Clinic, and he was saying, what I like about this site is I learn things from your site.

And I was surprised about that. And he said, you know, he was answering all these questions to people about heart palpitations, and he realized after a while that there must be a link between the heart palpitations and the menstrual cycle because a lot of people were asking about that. He did the research on it, and sure enough, there is a link.

David: One of the things about medicine that always strikes me is that it’s not particularly systematic in how diagnoses are done. So when you have somebody presenting with symptoms and you’ve got a doctor giving some answers and patients chipping in, it’s great that you’ve got millions of visitors and excellent physicians who can help out.

But there are some more systematic approaches that are being developed. And I wonder if you’ve thought about marrying those up. I’m thinking about computer-aided decision support, for example, that might help elicit the symptoms that somebody might actually need to check to see whether sleep apnea or in fact something else might be also worth looking into.

Have you thought about incorporating those kinds of tools? Or how do you think about it?

John: We have spent a lot of time thinking about that, and especially because we have probably the largest archive of questions and answers. You know, for 14 years we’ve been doing this. There are millions of posts that we have. And just going through all of these archives has led to incredible insights as to what people are asking, what works or doesn’t work.

And so we are looking to that to say, since we have this incredible resource here, how can we help mine it in different ways to provide those sort of connections between the different diseases and do exactly what you’re talking about.

David: And then so there would be a kind of a research aspect to that, and you’d also maybe present information to patients to say, well, based on what you’re describing, maybe these are some other things that you might want to also be considering. You wouldn’t be just giving the diagnosis but it would be to help to steer people into the right sort of directions and questions that they should be asking. Is that the idea?

John: Exactly. So we have the ability to go through all this and find out exactly what all the related conditions are based on all the archives of questions, and use that to say here are a bunch of things you should look at as well. And hopefully this will help. If nothing else it will provide you with a lot more knowledge going in to speak with your doctor.

David: I guess another piece beyond understanding from some of the symptoms and other aspects, what are the questions that people should be asking: if you had access to a person’s personal information, like a personal health record, it seems like that might also help.

I know that it’s an anonymous site, but is there any way to think about linking with a patient’s personal health record so that the questions that they are providing are more on target, or the answers can be recorded by them in a systematic way?

John: We’ve been spending a lot of time with our users to understand how we can serve them better on that front. We want to do this in conjunction with them. And we want to make sure that we have their trust. So I think over the years we’ve built the trust of our users. And so we want to make sure that as we do accept more information, that they are comfortable with how it’s being used.

So, we were spending time with them and said, we want to keep this anonymous. I think that it’s important to make sure we relate that the information we share here is not going to go back and be connected to you. But at the same time we want to make sure that you can ask questions and provide the relevant information to get the best response back.

We spend time with them to understand – how do we provide more information while at the same time maintaining trust and anonymity of the users.

David: You described before how you had patients who were going and getting, in-person, second opinions after they’d had conversations on MedHelp. Can you describe a little bit what the demographics might be of a typical user. I’m sure with four million people, you’ve got all types. But are there any particular types of users that are worth talking about?

John: Well, you know one thing that has been unique is – I know a lot of these sites that talk about having online communities. A lot of them tend to be heavily skewed towards women. They have 80 percent women or 85 percent women. I think we are surprisingly balanced from that perspective. For whatever reason the men seem comfortable coming online, as well, on our site and we tend to have a very good balance.

We tend to also reach, I think, older people as well. Whereas a typical demographic of an online health community would be primarily younger women. Since we tend to be balanced by age, balanced by sex and so we have a large audience.

I remember when I was traveling in India over Christmas. When we got there, I was in this rickshaw and asked the rickshaw driver as he was talking to me and he asked me, “what do you do?” and I say that I work for MedHelp and he said, “MedHelp, I go to your site to ask questions.” I go, “What do you mean?” He goes, “Well, I have a cellular phone and on my cellular phone I can access your site.” And he showed it to me and he said, “I’ve gone there and I’ve read the questions and answers and it’s really useful.”

And so, I think when you look at our site, a large portion, we have information that is accessible to everybody: the young, the old, people with broadband, people with dial-up. Maintaining that accessibility has been key to the site.

David: Tell me a little bit about the business model, because you have described a lot of activities that are going on and it sounds like it’s a very valuable service, but I haven’t heard yet about what the revenue generation model is.

John: We do have advertising on the site. Before we actually did a lot of that, we reached out to the users and we played with different models. Advertising has worked very well for us. For the users, they were happy to have the advertising there. So, if it makes sense to them, they do click on it. The advertising tends to be very relevant. If they’re in a specific forum, the advertising is definitely targeted to that condition.

From the users, they see relevant ads. From the advertisers, they’re happy because they get in front of the people that it makes sense. So, it was a very nice marriage between the different parties.

David: It does seem to make sense because people are really segmenting themselves based on the specific forum that they’re visiting. I did notice that a lot of the ads, and this is probably not a surprise, are for prescription drugs and even for some of the blockbuster drugs. There would be blockbusters – I noticed that an Exubera ad followed me around from forum to forum, probably because a lot of people have diabetes and advertisers are paying top dollar to get that kind of ad placement.

I’m wondering what you think about the sustainability of that model and if that’s the kind of model that you think you’ll, if we have this conversation again in a couple of years, will it be more or less similar to what you’ve done now or are there other sorts of avenues for revenue opportunities?

John: We definitely are interested in working with different hospitals, with other companies on doing surveys. I think that if people are interested in getting surveys of users and willing to pay the users to do it, I think we can find ways to do that to benefit the users as well. We would embrace that.

We want to keep it, part and parcel, from a users perspective to make sure that we’re not putting up unnecessary barriers or making an unpleasant experience. So, we want to do that and we have all these hospitals that we partner with and whatever we can do to help them as well, we’d love to do.

David: Now, the company’s been around quite awhile, as you described early on, and lately in the last year or so there’s been a lot of talk about Health 2.0. I know there was just a conference on that topic. If I look at your site, it has a lot of elements that you describe as Health 2.0. What’s your impression about Health 2.0? Do you consider yourself in that space? Do you think that the hype is justified? Are there any aspects of it that are important for MedHelp as you think about your next steps?

John: I think the user need has been around for a very long time. For the last fourteen years people have been clamoring for better access to doctors, for better communities to discuss stuff with other patients. The path has been there. I think the doctors also have been willing to do the outreach. I think that aspect of it has been around for a long time and that’s not new. We do have a lot of interesting technologies that are coming out that are helping, facilitating, this sort of interaction.

Back when we had the previous bubble, there was a lot of buzz around this as well and I think a lot of people –rather than really thinking at the needs of the patients– get caught up in the hype and the Health 2.0… A lot of them disappeared. I think almost all of them after a while went away.

So, for us the question is, we’d love to see this interest in it. I hope it’s a sustained interest. This is a field where I want a lot of people to succeed because they’re all serving a very important need.

David: Does the company have external investors? Are you looking at that, either partnerships or more traditional kinds of financial players?

John: We have been internally financed. We’ve pushed a lot to keep the company profitable. Rather than the money it’s the partners you work with. We have always been looking to work with the right partners and I think with the right partners you can grow a very big, very successful company. So the thing, our approach to any of the financing will be let’s understand who’re the partners you’re working with. If that makes sense then everything will fall into place.

You need to find an investor that understands the space, what the needs are. Because the danger is that if they don’t understand the space, they come in and then money can make you do very unnatural things very quickly. I think with the right partners you can do a tremendous amount. There is a lot that has to be done in this space and we have four and one-half million users. We are very proud of that.

But I think there is an opportunity here to easily get to 10, 15 million users a month. I think that there is a tremendous amount that can be done. We’d love to get there. So, if we could find the right partner, we’d love to work with them to sort of accelerate that and get there and to help as many people as we can.

David: I’ve been speaking today with John de Souza, CEO of MedHelp. John, thanks very much for your time.

John: Thank you very much for having me.

October 17, 2007

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