The Value of Openness: The PatientsLikeMe Blog

2010 was a strong year for business development at PatientsLikeMe.  Our goal was - and continues to be - to align patients’ needs with industry interests in order to maximize interaction between the two.  Here are a few of our successes and challenges over the year.

Successes

1.  New Partnerships, New Communities

In the first quarter of 2010, PatientsLikeMe launched two communities with corporate partners.  UCB helped us develop our Epilepsy Community, while Novartis partnered with us to create our Transplants Community.  Both communities have grown to more than 3,000 patient members and are now the largest of their kind in the world.

As with all of our partnerships, we made sure the focus is on the patient experience.   For example, what are your perceptions about the medications you take?  How do you see these treatments impacting your quality of life?  Getting quantifiable data on such questions can help our partners understand how they can help patients like you improve your health outcomes.

2.  Enhanced Services for Partners

When we create products and services for our corporate partners, it’s with a single objective:  to amplify the patient voice.  As a result, healthcare companies who wish to improve health outcomes have the information to improve their products and services accordingly.  In 2010, PatientsLikeMe further heightened the voice of patients by enhancing two existing products.

PatientsLikeMeListen^TM and PatientsLikeMeLandscape^TM

These complementary services help measure both the frequency and sentiment of treatment discussions in our community forums.  In 2010, we added functionality that allows our partners to see a longitudinal comparative view of patient sentiment (using  PatientsLikeMeListen^TM) as well as identify discussion topics that are rising within a forum (using PatientsLikeMeLandscape^TM ).  Both products help to elevate patient concerns and bring their importance and relevance to life for industry partners.

Challenges

As a for-profit health company that enables data sharing by patients, we knew we’d face our share of challenges.  2010 was no different.  Many groups, including patients, nonprofits, government and industry, had valid concerns about working with PatientsLikeMe because of our Openness Philosophy.

1.  Guidance on Industry Interaction with Social Media

One of the main (and valid) concerns our industry partners express is that the Food and Drug Administration has yet to deliver clear guidelines on how to interact with social media.  Dipping their collective toes into the social media wave pool is perceived as risky because the FDA levies severe penalties for companies attempting to directly sell to patients.

PatientsLikeMe has taken a leadership role in addressing this concern by further developing our PatientsLikeMeLeaders^TM service. After investigating all privacy and regulatory conditions, PatientsLikeMe has created a fully compliant solution for direct industry-patient feedback in an online forum that we moderate.  Now you as patients will be heard directly by those making decisions on what treatments are developed and how they are introduced, while our partners can learn what patients like you want and need - without fear of non-compliance.

2.  Being Open About the Data Scraping Incident

In May 2010, we discovered that a major media monitoring company had created a patient account and automatically downloaded forum posts in order to add data to their sentiment analysis client service.  Not only is that a violation of our User Agreement (”You may not use any robot, spider, scraper, or other automated means to access the Site or content or services provided on the Site for any purposes.”), but it reduces the trust patients have with our site.

We dealt with this challenge openly by disclosing our discovery of this “data scraping incident” the day it occurred.  We sent a message informing all patient members, and about 200 patient members left the site as a result.  In October 2010, The Wall Street Journal included PatientsLikeMe in its special series on the benefits and risks of sharing health information online, with the practice of data scraping highlighted as a risk to patients.  We welcomed this article coverage and continue to engage with other leaders in this ongoing discussion.

Since our PatientsLikeMeListen^TM product measures sentiment of discussions in our forums, we reminded our members about this similar service.  We will continue to inform and educate our members about how we conduct business so there are no surprises.

Summary

In 2010, we continued to grow our patient communities and further confirmed that the success of our business lies in aligning patient and industry interests.  In fact, we have recently been cited by the Board of Innovation as one of 10 Business Models That Rocked in 2010.

Because of the sensitivity of sharing health data online, however, we remain upfront, open and transparent about our business practices so that patients like you can be informed participants in your health, medical research and the development of effective treatments.  Happy 2011!

Without looking too far forward I think we all can see a day where patients have the ability to see how different decisions they make directly impact their health outcomes. I don’t mean in an abstract sense, but rather in a practical way that can change day-to-day decisions about nutrition, exercise, medication choices, and doctor visits.

Aligning Patients and Industry is Possible

Calling the path to getting to that nirvana “the easy part” would be insane until you compare it to trying to create a thriving and responsible business out of this endeavor. PatientsLikeMe is attempting to do just that. The key is being responsible in the decisions we make as we move forward. We must not only adhere to our core values, but also select the “right” partners.

Our partnership objectives are to work with companies dedicated to optimizing health outcomes through the use of real-world, patient-reported data. This means that companies have to value patient experiences, believe that patients understand their health decisions, and regard patients as partners in obtaining the shared goal of improving outcomes.

No Race Car

As easy as that sounds, the devil is in the details. The revenue model of choice for social media is advertising; and as we’ve indicated many times before, there is no advertising on PatientsLikeMe. Our choice is to maintain the sanctity of our user experience without turning our site into a “race car.” This leaves us the option of selling the data that patients provide to us so that stakeholders in health can learn from their experiences.

How Can We Learn?

Data is the key to learning. Translating that data into actionable information for companies that are trying to maximize their profits while still keeping the patients’ interests at heart has been our biggest business challenge yet. Of course, all companies insist that they’re in business to help patients, but in all honesty, there are clear leaders in that regard—organizations that act on the ideals of the company revering their core values as more than rhetoric for annual reports.

We learn as much from these companies during the partnership development process as they learn from us. Should we work with them? Will this company value the same things that we value? Can the patients really be first in their decision-making when faced with tough business decisions? We evaluate potential partners on these parameters as well as their ability to create positive change for patients quickly.

The Goal: Measure Everything For Poeple’s and Industry’s Benefit

One way we measure this ability is how much data is fed back to patients based on partner research conducted on our site. Although some of that information is proprietary, companies that share some interesting nuggets with the patients that supplied the data create a sense of goodwill and encourage greater participation in further studies. Patients feel like they have a direct impact on companies interested in their disease and clearly know that their voice has been heard. To us, that’s what the business of healthcare must be: a responsible dialog between patients and industry focused on serving unmet needs today and creating better treatments and cures for tomorrow.

We aspire to these goals and practice them daily. We continue to turn away business opportunities that don’t feel right. We do this for the patients who put their trust in us; that if we collect the best data on the patient experience, put the patient squarely in the center of their health decisions, and provide unprecedented insight into this experience for industry, PatientsLikeMe will be wildly successful. Our success is the patient’s success.

Much has been made about the potential for viable businesses in the health 2.0 movement. In short, these articles and blogs (among others) openly and appropriately question the long-term viability of the space:

• Seattle Post-Intelligencer
• Wikinomics Blog
• Chilmark Research Blog
• IHealthBeat
• San Francisco Chronicle

Are they right? That answer is unclear, but they are right to ask. In our spirit of openness at PatientsLikeMe, we’re going to share some of our experiences as we evolve our commercialization strategy.

In order to give context to the discussion, however, we want to share our corporate values. These values shape our lenses so when we have partnership opportunities, we see 20/20, and avoid color blindness, i.e. only seeing green.

Honor the trust patients place in us
Simply stated, this means “Patients First”. Patients trust us with their most valued health information and share it with people they believe have the same collective goals. We can’t overestimate the trust we’re given.

Openness
Per our Openness Philosophy, we believe that sharing health information is good. Why? Because sharing will drive massive change in healthcare.

Transparency
No surprises. Our members shouldn’t be surprised by any of our steps, especially in business development. We will disclose all of our partnerships on the site.

Wow!
When people see our site, we want them to think, “Wow!” Achieving our vision takes flawless execution and understanding of patient needs.

With these core values in mind, we attempt to match the needs of our patients with the goals of our partners. If the two are misaligned, then we pass on the deal. In fact, we have passed on dozens of opportunities because they weren’t aligned with our core values. We must embrace a high ethical standard because patients share data with us that would historically be held private—not just for their own benefit, but for that of others. Since they’re selfless, we must consider that selflessness when we enter into potential partnerships. If it doesn’t feel right, it’s not right.

Here’s an example of a deal we passed on. A provider directory service approached us about adding their solution onto our site. Patients need access to providers in their areas, right? The solution would be branded to PatientsLikeMe, and be fully integrated with the look and feel of our site—and with no upfront cost. So far so good.

As in all deals, the devil’s in the details. This company offered an ad-based revenue share model such that ads would be served as part of the solution on our site. The pitch was that this module would help to “monetize our community”.

People join PatientsLikeMe to share real-world information about their experience with their disease. They seek answers from each other; tricks that can help them have a better quality of life everyday. They share their data with the hope of providing a leading body of research that can advance the knowledge of the disease. If we were to work with this partner, the advertisers’ content would appear on our site without being subjected to the scrutiny of our core values. Essentially we would be getting paid to “look the other way” as any company willing to pay to promote their products gets back door access to our community. Patients entrust us to provide a safe environment for information sharing and to preserve the sanctity of our community. This deal didn’t feel aligned. So while we like the idea of a provider directory solution, we politely declined the opportunity.

Perhaps we’re not maximizing potential revenue for our business. Some of these deals may have net us a tidy stream of cash. It’s our belief, however, that endeavoring to solve the problems of disease through insight and information will yield demand for our products and services eclipsing that of misaligned options. Our core values wouldn’t be real if we weren’t principled in how we design our business. So we look for partners who are driven to advance knowledge in the disease and improve the day-to-day lives of patients. This may be a slower path to profitability, and one less traveled, but we believe it’s the right way to build PatientsLikeMe.