By Anna McClafferty
Senior Vice President, Insights – Health Union
April 1, 2019

Recognizing the growing role of patients and caregivers in healthcare decisions, pharmaceutical and biotechnology companies are looking for ways to easily and accurately infuse the voice of the patient and caregiver into strategic marketing decisions. The need to do so quickly, efficiently and accurately, particularly with hard-to-reach patients, creates a need for online patient communities. However, the approaches and philosophies behind these communities can vary greatly.

Since 2010, Health Union has been creating and cultivating condition-specific online health communities (OHC) based on a unique model for patient engagement, which in turn provides unique opportunities to access and learn from patients. Recently, the Health Union Insights team presented a session at the Pharma Market Research Conference in Newark, NJ. The session leveraged the team’s extensive marketing research expertise and in-depth online health community experience to help partners make smarter, more informed decisions for patient research. Included was an examination of the different viewpoints on the definition and role of patient communities, discussion of the benefits and limitations of each approach and case studies to illuminate the role of different community approaches.

Two of the most common uses of community we see in the context of market research are proprietary patient communities and patient advisory boards. Proprietary patient communities are generally used when iterative or extensive research or a longitudinal perspective is needed and can be particularly helpful for more difficult to recruit (lower incidence) populations. Patient advisory boards tend to take shape when executive teams are involved and in-person interactions are required. For this type of research, there’s usually benefit in a branded relationship with the patient, and again, they can be useful with difficult to recruit populations.

A third approach, the one created by Health Union, is that of an open, online health community, where all patients and care partners are included and can engage as they desire. Health Union understands that when people search online about their health, they seek information, connection or validation in a safe and understanding environment. To that end, we take great care to ensure the healthcare consumer does not encounter invasive personal questions in order to access information, and that their experience is self-directed.

So, when is this model appropriate for pharma marketing researchers?

When you’re seeking deep, unbiased insight for pharma marketing research

Health Union currently cultivates more than 30 condition-specific OHCs and will launch four more this year. These communities exist independent of client involvement and we engage with patient and care partner stakeholders around the clock. The communities are evergreen, constantly growing and filled with qualified people — all of which is validated by engagement metrics and third-party studies. The benefit for pharma marketing research partners is the ability to uncover insight about patient perceptions, beliefs and behaviors that will make a difference for your brands and the people who will benefit from your treatments. Our access to patients, the unfiltered conversations, and the actual online behavior, combined with our ability to interpret research results through the lens of the consumer is unique. We bring this level of knowledge to every market research engagement.

When you want to target specific patients as a subset of a broader population

Our ability to provide relevant content starts with a thorough and intimate understanding of the patient experience. We have many tools to monitor the health of our communities but one of our most important is the syndicated In America surveys. The surveys ask patients and caregivers about their diagnosis experience, condition status, treatment experience and quality of life, as well as information needs and resources. The results are shared back to the community in the form of different types of content and infographics, which help people feel understood, validated and not alone. While the In America surveys are a key foundation for each community’s content strategy, they also provide the Insights team, and our clients, with a comprehensive dataset that can help quantify the patient experience. Most importantly, extremely large sample sizes allow for robust analyses of specific patient subgroups of interest to our clients and the annualized survey allows for trending key changes over time. In addition, In America data can help inform the design of custom market research studies, providing a springboard of information that allows clients to focus more specifically on their desired research questions, avoiding the “kitchen sink” tendencies many fall subject to.

When you want to understand what does and doesn’t resonate, and why

Engagement opportunities continuously evolve based on the community — and no two communities are alike. Different types of engagement work for each community and every day we work to make sure that needs are being met. Examples of engagement include taking polls, sharing stories, signing up to receive newsletters, taking surveys to share experiences, commenting on posts or articles and posting questions that moderators or others within the community can address. There are also people who come purely to consume information, a behavior just as important to our learning and understanding. As a result, we examine and analyze the authentic, organic behaviors and conversations happening within our communities to understand what does (and doesn’t) matter to patients.

We are able to put your brand in the parking lot and listen and observe without the logistical challenges of setting up a community and finding patients.

With this, we continue to acknowledge that no one size fits all. There are times when proprietary communities or advisory councils are more appropriate. And Health Union’s online health communities don’t negate these other opportunities – they feed them. The online health community represents the overall patient population, from which specific patients can be targeted for enrollment in a proprietary community or advisory council, or for participation in custom market research.