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September 22, 2017 Amrita Bhowmick0

For years, many luxury goods retailers, concerned about exclusivity and control, either sniffed at or completely ignored the internet as a marketplace.

Now, a recent McKinsey & Company Marketing & Sales report tells us “Nearly half of luxury goods buying decisions are already influenced by what consumers hear or see online.” The same report predicts that by 2018, “global digital sales for women’s luxury fashion are expected to grow from a current 3 percent of the total market to 17 percent, for a total market size of $12 billion.”

Conventional wisdom also underestimated the internet’s power as a source for health information, but a Pew Research Center study shows “80% of internet users have looked online for information about any of 15 health topics such as a specific disease or treatment.” The same study finds “34% of internet users, or 25% of adults, have read someone else’s commentary or experience about health or medical issues on an online news group, website, or blog.”

Likewise, conventional wisdom held that patients would never use social media for health information. However, Health Union research found that 26% of the patients used Facebook once a day or more for health information and more than half (52%) use it at least monthly.

Hubs for medical innovation

While the emergence of social media tools and online health communities as hubs for medical innovation might seem far-fetched, their importance in a digital environment can’t be overstated. We now live in a world where communication is multi-directional, information is more accessible, and experience-sharing is simple and fast.

But what can online health communities contribute to health research?

DTC Perspectives | DTC in FocusNot surprisingly, descriptions of a patient’s experience are most valuable when they come directly from the patient. Posing questions to an online community or monitoring conversations aids in the observation of trends in habits, desires, symptoms, and other information otherwise unavailable or difficult to obtain. Trends can be analyzed and online communities can provide feedback regarding product attributes that patients and caregivers find most important. Observational studies can inform researchers about real patient experiences and patient-driven research can serve as a starting point for future trials or as verification of previous results.

Online communities also offer valuable input for clinical trial design and feasibility. While the current belief is that patients are generally not involved, we’ve found that patients are very interested in contributing to the study design process. Patient advocates can add value to study development by identifying challenges and helping to create patient communications.

The rise of patient-driven research

We are witnessing a growing trend of patient-driven data from wearable technology from companies like FitBit, Garmin, and Apple as well as from direct-to-consumer health testing such as 23andMe or recently FDA-approved tests that can detect a predisposition for late-onset Alzheimer’s or Parkinson’s disease.

At the same time, we see an increase in patient-driven research. Although it is a less-controlled form of study, there is potential for it to complement controlled, scientific studies. And while there is a possibility for inaccurate data, there is significant potential for fast, large-scale, and low-cost data collection.

As an example, consider a recent online community’s participant-led study of the effects of lithium on patients with amyotrophic lateral sclerosis (ALS). The study had no control arm and required patients in the community to self-report their experience and ALS symptom progression while taking lithium.

The results from the community indicated there was no connection between lithium and symptom progression. Researchers then completed a scientific study, analyzed the patient data, and compared the experimental group to a control arm utilizing existing electronic patient records. Researchers concluded that the results of the patient-driven study held validity. These results also confirmed the findings of a previously conducted clinical trial investigating the same hypothesis  —  that lithium did not affect ALS progression.

Though these types of trials can have academic merit, they are not a suitable replacement for FDA-approved clinical trials. However, they show promise as a means of validating previous study results, or generating interest in a particular treatment method.

What motivates patients to participate?

Health Union’s latest survey data from nearly 20,000 individuals representing 12 different chronic conditions finds the majority of respondents (64%) are interested in participating in clinical research. We find the same trend among condition-specific communities such as migraine (74%), rheumatoid arthritis (64%), and inflammatory bowel disease (57%).

Community members are motivated by a desire to improve the quality of medical care for themselves and others, and to help researchers understand what it’s like to live with the condition. Other insights we’ve uncovered influencing motivation are also personal and compelling:

  • “As a young person who was diagnosed with something that can make you feel helpless, research and taking charge by devoting my career to making a positive impact has pulled me through.” — Stephanie B.,
  • “Being able to say they actually wanted my opinion…can make a person feel validated and important.” — Katie G.,
  • “I think the patients [researchers] are looking to recruit would be more apt to be part of a clinical trial that has patients and researchers working together.” – Cathy C.,

Tapping into the desire to participate in clinical research, online health communities can broaden the scope for recruitment of research participants beyond traditional methods and often accelerate the speed of enrollment.

The incredible potential of online communities in health research

Online health communities can change the efficiency, feasibility, and speed of health research while engaging a larger population than ever before. Trials have the possibility to be designed for maximum retention and recruited with more efficiency.

The possibilities within this realm are vast and, if treated with appropriate caution, can have a tremendous impact on patient care along with the quality of health research and innovation.

April 15, 2015 Amrita Bhowmick

We know that the formation of healthy lifestyle habits is critical to overall health. However, adherence to exercise programs, medication regimens, or dietary changes can be challenging. So how do we help patients develop habits to improve their overall health?

Habits are defined actions employed without conscious thought.1 Habit forming potential of any behavior is often driven by two factors: frequency and perceived utility. The more frequently a new behavior occurs, especially within a short period of time, the stronger the habit becomes. Likewise, the more rewarding the behavior is perceived to be (its utility), the greater the chance for habit formation. The “Hook Model” is one method that we use at Health Union to build value and encourage habit-forming behaviors within our communities. Four key components converge in the hook model – a trigger, an action, a reward, and an investment2 – to create ecosystems that cultivate engagement habits and motivate people to live better with their health conditions.


Health Union communities use both internal and external triggers to encourage patient engagement. External triggers may include advertisements or comments from doctors, family, and friends; while internal triggers are leveraged when an action becomes strongly tied to a thought, emotion or preexisting routine, like checking email every morning. While we utilize some paid external triggers, like Facebook advertising, we’ve found that relationship triggers (social media sharing/word of mouth) and owned triggers (opting into a weekly newsletter) are most effective for long-term engagement. Owned triggers are most likely to prompt repeat engagement until a habit is formed, and relationship triggers support continuous community growth.


The more people interact with your product, the more likely they are to keep doing it. Our community engagement strategy creates a “funnel” approach to increase the level of participation over time, knowing that simple actions can lead to big changes in future behavior.3 For instance, our members may start as site visitors, then progress to following us on social media and engage in passive activities like anonymous polls. Passive participation may lead to newsletter registration and eventually active engagement by posting comments or personal stories. It’s important to make it easy for even the most passive patients to engage while still providing outlets for the most active members.


Provide a real benefit to action – with variability – and do it quickly! Show people that taking action results in a clear benefit. Of course, keep in mind that the preferred benefits vary from one person to the next. Make sure to clearly communicate what the reward is – whether that is answers to basic questions, immediate poll results upon voting, published results from surveys, or community support. Don’t assume the reward is obvious and communicate the benefit gained by others as well as that of the individual. Variability can multiply the natural effects of a reward and keep people coming back for more. All Health Union communities provide daily content that is relevant and useful, but the type of content, topics, and authors are varied to create novelty.


Encourage people to make an investment, beyond just lurking or passively clicking. This may be an emotional investment, an investment of time, or a contribution of personal information. Investment implies action that will improve the service for the next visit. And, the greater the investment, the more likely they are to continue engaging over time, thereby increasing the value of the product. For example, the simplest investment is to follow one of our social media accounts. However, we also invite members to “own” part of the site by participating in surveys and publishing personal stories.

What else can we do?

In addition to the four elements of the Hook Model, don’t forget to …

  • Remove barriers and provide support. Be aware of both perceived and actual barriers. For example, in response to a perceived barrier that weight loss is dependent on foregoing all desserts, provide recipes for healthier dessert options.
  • Strengthen self-efficacy, the belief in one’s own ability to complete tasks and reach goals. Since many people are uncomfortable asking their doctors questions, provide discussion guides to encourage dialogue focusing on areas where the patient is the expert – like how a condition affects day-to-day life.
  • Find what people are doing already, and make it easier for them by linking habits to daily routines.4 Our content strategy focuses heavily on giving people the information we know they are seeking, where they are already seeking it (with social media and search).

The ultimate goal is to create a cycle of interaction where the investment itself becomes an internal trigger. Members seek responses to topics discussed within the community – that desire for shared experience is the trigger to continue engaging. And then, they’re hooked!


  1. E. Morsella, J.A. Bargh, P.M. Gollwitzer, eds., Oxford Handbook of Human Action (New York: Oxford University Press, 2008).
  2. Eyal, Nir. Hooked: How to Build Habit-Forming Products.
  3. J.L. Freedman and S.C. Fraser, “Compliance Without Pressure: The Foot-in-the-door Technique.” Journal of Personality and Social Psychology 4, no. 2 (1966) 196-202.
  4. Bas Verplanken and Wendy Wood, “Interventions to Break and Create Consumer Habits, Journal of Public Policy & Marketing 25, no. 1 (March 2006): 90-103, doi: 10.1509/jppm.25.1.90.


March 17, 2015 Amrita Bhowmick

People actively involved in their health and healthcare generally have better outcomes in managing their condition. So how do those of us working in healthcare and healthcare marketing motivate people to get more involved? While we don’t have all the answers, Health Union has learned some valuable lessons and practical tips for enhancing patient engagement since launching our first platform,, more than four years ago. Here, we share some key insights from our recipe for cultivating active, engaged patient communities, and hopefully, help marketers avoid common pitfalls.

1. Listen to patient communities
Our mantra – the community is always right! Observe patterns of engagement to learn what interests patients and what doesn’t. Success will come from aligning your agenda to respond to their needs, which will continue to evolve over time. For instance, early in the lifecycle of our community, Health Union created a series of yoga videos that could help patients with rheumatoid arthritis increase strength and flexibility. Unfortunately, we offered a great solution to a problem that our current members weren’t interested in fixing. However, as our RA community continued to grow – and interests became more diverse – these yoga videos eventually became relevant to a certain segment of the community. Engagement often depends on offering the right content at the right time, and it’s important to continually assess the needs of patients as your audience grows.

 2. Segment based on behaviors, not demographics
In our communities, we observe similar behavior patterns at various phases throughout the patient journey. For example, in people with type 2 diabetes, we recognized that patients who were newly diagnosed, adding a new medication, or lapsed treaters were all relating to tips-and-tricks-type of problem solution articles. So, we created a profile for these “frustrated quick-fixers” and developed a strategy to develop this type of content on many different topics. Once you recognize a behavior segment, seek to understand what’s driving those behaviors and find multiple ways to meet the true underlying needs.

3. Meet people where they are
Make it simple for people to engage, regardless of how much time, knowledge, or interest they have. The easier it is for people to engage, the more likely they are to do it, and keep doing it! While this seems obvious, it is important to keep in mind that what is easy for one person, may not be easy for another. Provide multiple, unique, and easy opportunities for people to participate where they are and according to their comfort level. We often initiate engagement on Facebook (without requiring a site visit) since patients are already there and willing to participate with a like, share, or comment. On our websites, anonymous polls enable “lurkers” to participate. We also build content to meet the needs of different types of community members. While some content is simple, basic information that can quickly answer commonly asked questions, other content is more detailed with higher-level scientific data.

4. Validate concerns or challenges first, and then offer solutions
Most people know what they should do to improve their health, but they don’t take action, for many reasons. Choosing healthy behavior is difficult. We’ve learned that we can increase engagement and empower our community members when we acknowledge and validate the challenges of making health improvements before offering solutions.

Many people with migraines become frustrated when encouraged to exercise by their healthcare providers. For some, exercise can trigger a migraine attack; for others, migraine is chronic and getting out of bed is exhausting in itself. Exercise tips and advice are often met with negative reactions among the migraine community. However, when we acknowledge that exercise can be a challenge for people with migraine and offer varying ways to increase physical activity while managing potential migraine triggers, we create a positive connection and encourage healthier behavior.

5. Align interests and opportunities
Once you learn what interests and motivates your audiences, provide more opportunities for them to get involved. Use past performance to guide strategy. Experiment with variations on proven areas of interest to create new ways to engage. For instance, we received an overwhelming response to our annual Migraine In America survey, making it clear that people with migraines are seeking opportunities to be heard, share their opinions, and compare experiences. As a result, we started building more feedback mechanisms into our communities – from quick polls and questions for our Facebook community to creating specific opportunities for patients to opt-in for survey invitations from corporate and academic partners.

While there are many ways to create and maintain patient engagement, these principles are some of the most critical for success.

Editor’s Note: This is the first installment in a two-part series from Health Union. Check out our April issue of DTC in Focus to read about making engagement a habit and how these principles apply to adherence and patient support.