In 2011, my team, Merck Medical Information and Innovation (M2i2) partnered to build an online research community around psoriasis with PatientsLikeMe, an online network of about 250,000 patients seeking to advance research in their disease and connect with others like them for personalized learning and support.

This was a major partnership for Merck, an effort to test how a new kind of online evidence network could inform drug development using real-world health outcomes in psoriasis, the most prevalent autoimmune disease in the US[1]. Despite large numbers of psoriasis patients, data on outcomes had been, to date, frustratingly limited. Our intent was twofold: first, to provide a tool to help improve patients’ lives; second, to gain knowledge about symptoms, self care, and the lives of patients over time to more clearly discern how people use medications with a goal towards informing the development of future treatment.

The second goal proved challenging. After a year of community building, we had close to 2,000 psoriasis users, which was below our shared expectations for a research registry. While PatientsLikeMe had been successfully building online disease communities for a number of years, when it came to the research we wanted to conduct, psoriasis patients behaved differently on the site. As a result, we did not reach the critical mass needed for long-term data on the targeted subset of the population.

While patients were getting value from the community, at just over one year into the project, we had a choice to either continue with the current agreement or reinvest in our original research goal. Reexamining our objectives, I realized we needed to shift focus to produce business value that justified our continued investment in this patient partnership model. 

I came to the team at PatientsLikeMe with a challenge: show me that PatientsLikeMe can affect how we think about launching a drug that matters to Merck and do it within the year. PatientsLikeMe returned with a subject that perfectly aligned with a current research area for Merck: sleep deprivation.

Diving into their network and history, PatientsLikeMe analyzed over five years worth of structured data on people’s experiences with insomnia.  They launched a study on related conditions, generating over 5,000 responses in less than two weeks. It produced useful insights, which PatientsLikeMe shared with patients, the press and with us: sleep issues are highly prevalent and largely undiagnosed among PatientsLikeMe’s chronically ill community. For example, 13% of respondents reported being diagnosed with insomnia, but nearly three-quarters of the undiagnosed respondents reported symptoms indicating they were at risk of having the disorder[2]. Clearly patients with chronic illness have levels of sleep deprivation that had not previously been broadly understood.

Leveraging PatientsLikeMe’s data with our in-house expertise and analytics, we viewed sleep deprivation through a new lens, diving into the unmet needs of a large community of sufferers. Together, PatientsLikeMe’s community data and Merck’s advanced analysis produced novel ways to grasp the sometimes hidden impact of diseases in a patient’s life and find new ways to meet our shared goal of improving health.

From this collaboration, we learned many important lessons that have become the foundation for our ongoing portfolio of work to innovate Merck’s interface with patients and the health care delivery system:

1) Partner wisely

Innovation is complicated both for large enterprises like Merck and for small companies trying to understand how these enterprises work. We wrote our contract to allow for trust and flexibility on both sides, which involves shared risk. This requires alignment and a shared commitment to generate value, which was essential in allowing us to adapt rather than fail. By working with PatientsLikeMe, we also knew that psoriasis patients still had a community—with all its resources and peers—when we changed business focus.

2) Don’t go stealth

“Stealth innovation” is popular among the intrapreneur set, and especially those who operate in organizations with a lot of red tape.

But we took a different path, embracing compliance early and tackling these issues head on. This allowed us to establish robust guidelines, which enabled us to change our business focus from psoriasis to sleep deprivation almost instantly.

My team and PatientsLikeMe worked in depth to educate Merck’s legal, safety and privacy staff, leading to open, transparent innovation that could thrive while meeting the regulatory needs of both organizations.

3) Be prepared to pull the cord early

If the project is not going to get where it needs to, it’s OK to pause and regroup. When the psoriasis project didn’t meet velocity projections, we checked progress against our original intentions, not against budget cycles and resisted the all-too-common corporate reaction to a struggling project: let it run until the contract finishes and quietly walk away. Of course, this approach was much more work, but it enabled us to hit on an opportunity to innovate in the near term.

4) Pivots aren’t just for startups

We turned the psoriasis project with PatientsLikeMe in a completely new direction in a short period of time. Our team and PatientsLikeMe maintained remarkable agility founded in deep collaboration, trust and focus on patient-centered research. With skilled operators from both sides on the ground, including having a Merck team member onsite at PatientsLikeMe weekly, we could iterate at the pace of PatientsLikeMe, a smaller, internet-focused business.

5) Go all in

When we saw the opportunity with sleep deprivation—a deep, unmet need across PatientsLikeMe’s community—we committed meaningful support and resources to infuse our work with those patient experiences.

My team and I have taken personal ownership of this new project to advance our efforts within Merck, assuming the personal risk that our data-driven insights could potentially influence the development of new treatment.  Also by vocally advocating for the partnership and its benefits at company-wide meetings, we demonstrated the commitment we had to the PatientsLikeMe relationship—and the patients they represent—both internally and externally.

In conclusion, our partnership with PatientsLikeMe is a prime example of how agile, effective collaboration can yield real benefits in population health. Pharma is at the beginning of a dialogue with the world on evidence, outcomes, and patient well-being. It’s up to the leadership in pharma to overcome the risks and operationalize this conversation to enhance data-driven approaches, improve population health and critical care, and support patient engagement.

Sachin Jain, M.D., M.B.A., is chief medical information and innovation officer (CMIO) at Merck