How Pharma Marketers Can Work With Online Patient Communities and Social Networks

In case you’re not familiar with PatientsLikeMe, it’s a social network that enables users to share their symptoms with the goal of tracking treatment outcomes. According to Compete, the site draws between 60,000 and 100,000 unique visitors each month, and has communities for ALS, multiple sclerosis (MS), Parkinson’s disease, and HIV, among others.

We recently chatted with Benjamin Heywood, the president and director of PatientsLikeMe, about the patient communities on the site, developing a healthcare-based social network, and how it works with pharmaceutical companies to develop trial awareness and find patients for enrollment. Here’s a snippet from the full interview available on eMarketer Total Access.

eMarketer: What is PatientsLikeMe and when did you launch its first community?

Benjamin Heywood:

We’re an information and data-sharing platform. Our communities are set up so patients can share detailed information in a structured way about their experiences, symptoms and outcomes over time. Our first community in late 2005, early 2006.

Whereas with most traditional forums you go online, create a bio and an avatar, and you’re in a sort of anonymous environment, we offer detailed health profiles that show who you are and where you’re at in your illness. When you’re having dialogue on our site, it becomes a kind of validator of who you are. You’re defined by the information that you’re sharing.

Our focus is around patients with what we call life-changing illnesses, which is typically defined as a chronic illness that becomes the primary focus of a patient’s life. It can be ALS or Lou Gehrig’s disease, fibromyalgia, MS or depression. Our fibromyalgia community is our newest community. It has 15,000 patients and is about 18 months old.

eMarketer: What makes PatientsLikeMe a business? How are you making money?

Heywood:

We work with pharmaceutical companies and other players in the healthcare industry on market research and clinical research to understand the patient experience. We are one of the primary sources of patient-reported outcomes since we have lots of data. Our primary revenue source is the packaging of insights for pharmaceutical marketers.

Our primary business model is focused on taking the information and data that patients are sharing on the site, packaging it up in various ways and doing clinical and market research primarily with pharmaceutical companies. We also look to engage patients and pharma marketers directly where and when appropriate so that both parties can learn from each other in a responsible, productive way.

eMarketer: How does your company share the patient information with pharmaceutical marketers?

Heywood:

We work very hard to offer openness and transparency. On our site, the openness philosophy appears right next to our privacy policy, which talks about the value of openly sharing health information. If you go to our homepage, there is a link to the information for industry partners in the upper-right-hand corner. We encourage patients to ask us anything about our stance on openness, our privacy policy, how we make money and who our partners are.

That said, sharing health information has risks associated with it. For example, I recently sent out an email to our user community that described an incident where a major media monitoring company was scraping our forum—posing as a patient and scraping our forums for data. We sent an email to each of our 75,000 users describing what happened, talking about how we sell the data accumulated on our site and where patients should be careful about sharing information on our site as well as elsewhere on the internet.

eMarketer: These are precisely the kinds of issues that discourage people from sharing information as personal as their health histories. What are you doing to allay concerns that may inhibit your ability to scale?

Heywood:

We have a scraping detection system. We caught the problem I mentioned within a day of its occurrence. Less than 5% of the forum was scraped. We discourage people from using their real names or email addresses as user names and from not using real names on our forums. In fact, when they’re typing their username to log onto a forum, there’s a highlight that comes up and says “We recommend you don’t use your real name as part of your username.”

The risks are real and I don’t want to diminish them, but they’re also a bit of a boogeyman that people throw out there. The question is, do the benefits of participation outweigh the risks?

eMarketer: To what extent are pharmaceutical marketers participating in patient forums and conversations, advertising and sponsorships on your site?

Heywood:

We don’t do advertising in any of the traditional ways. We have a product called Leaders, which allows pharma marketers to interact with a handful patients, 25 to 50 patients, over a six-month period.

We have two kinds of listening programs for marketers. We set up a private forum, and we invite patients to dialogue with marketers. Marketers can also survey a handful of patients or passively listen to patient dialogue.

We also do clinical trial awareness, which is the closest we get to advertising. This is where we work with pharmaceutical companies and target specific patients who meet trial criteria. We help the marketers find patients for enrollment in trials.

We don’t do sponsored communities in the typical use of that term but we do work with certain clients in starting new communities for both clinical and market research. For example, we work with Novartis on organ transplant information, and we work with biopharma company UCB on epilepsy. We are very public about the fact that we’re working with those companies.

eMarketer: Can you give an example of how a marketer uses data from your system?

Heywood:

We recently presented original research at a MS conference with Novartis. The research looked at developing a scale to measure the impact of injectable drugs and was based on patient conversations that Novartis listened in on passively. Novartis also conducted research and collected data on disease structure, outcomes, symptoms and dosing. Then it reached out to patients to supplement the data.

Patients are sharing structured data about the outcomes, treatments and symptoms. They are completing patient-reported outcome surveys, telling us the treatments they’re on, dosing, why they started and reasons for stopping treatment. We have the ability to do detailed clinical research.

We’ve done 13 published research papers in two years. We have four PhDs and two registered nurses on staff.

eMarketer: How does your business contribute to the greater good?

Heywood:

We’re working with pharma companies to get them closer to patients. Given that consumers are driving more of their own health care decisions, pharma marketers are trying to get a better sense of who’s using their product, why they’re using it and trying to shift their mind-set to be more in the business of outcomes than in the business of pills.

We’re disseminating clinical research in conjunction with academic partnerships and sponsored research. All of this begins to inform the clinical practice. The most powerful way we’re having an impact is that we’re actually directly working with patients. They’re bringing information they’ve learned back to their physicians. For example, 10% of our users report that they switched physicians as a result of the information they learned on the site.

eMarketer: What are pharmaceutical marketers looking for in terms of your forums?

Heywood:

Clients are trying to understand the patient experience. One way to do that is to bring the voice of the patient into their organization. This can be accomplished through a broad range of services from working with their clinical and market researchers, to trial recruiting and building tools for a patient community. The marketers we work with are spending a lot of money to actively engage in this open network. Without being specific, our large-scale partnerships are typically two-year deals that involve millions of dollars.

eMarketer: As patients become more empowered and more information becomes available to them on sites like yours, what steps are you taking to prevent the spread of disinformation?

Heywood:

We don’t actively moderate in the context of looking for incorrect information. We suggest that patients share their experience but don’t give advice or medical opinions. We have a more hands-off approach and prefer the community to manage itself.

The term “off-label use” [of a drug] really only means something to pharmaceutical people. For patients, taking a drug is hopefully solving a problem. There are some risks when you have patients engaging one another. Clearly, we think the benefits significantly outweigh the risks of some disinformation.

You’ll see patients comment, “I notice that you mentioned your weight is really dropping” and maybe someone else will say, “When I was on drug X that happened to me too; you should talk to your doctor.”

The full version of this interview is available here, to eMarketer Total Access clients only. Every day they have access to new interviews with digital marketing leaders and trendsetting entrepreneurs.

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