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Online Health Communities: A New Frontier in Health Research

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.

Amrita Bhowmick
Chief Community Officer at Health Union, LLC
Amrita Bhowmick, MPH, MBA is Chief Community Officer at Health Union, LLC where she combines business acumen and public health expertise to create and cultivate Health Union’s content-rich patient communities, including, MultipleSclerosis.Net, and With her Master’s degree in Public Health and many years in pharmaceutical marketing and analytics, Amrita has accumulated extensive healthcare experience, which she has honed to develop a keen sense for patient needs. Her knowledge and intuition of the patient journey help translate Health Union’s large-scale patient dialogue into the real insights that make these communities successful.
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