Chronic disease is a frustrating, emotionally exhausting, and sometimes life-threatening experience. That’s what makes it such a data-rich opportunity for analyzing how a rival might be tapping into this market.
Back in 2001, before Facebook, Twitter, LinkedIn and online heath forums, the World Wide Web was a wild frontier of informal discussion groups and list serves. Daniel Vasella, former CEO of Novartis, once wrote: “There is real power in the Internet as a source of information, but especially as a way to connect with each other, to share experiences, knowledge and help each other.” (Magic Cancer Bullet, Daniel Vasella and Robert Slater, Copyright 2003, page 126)
He was writing about how these discussion groups forced Novartis’ hand to fast track Gleevec, a miracle drug that could arrest a particular type of blood cancer.
Let’s flip this model around. Patient and their families used the Net in its formative years as a platform for discussion and a way to vent their feelings and frustrations about individual FDA rulings or drug company messages. These same intense discussions - particularly surrounding chronic disease areas – can become a true means of identifying and measuring how effective a rival’s key selling messages might be in this area.
The friction between the need for a cure and the incessant impact of the disease on patient communities throws off all sorts of conversational sparks within social media. Earlier this month, the FDA signed a research collaboration with PatientsLikeMe to determine how patient-reported data can give new insights into drug safety. The information gathered by the FDA will be very beneficial in understanding and monitoring activities related to risk assessment and risk management from the patient perspective; however, as with the other countless online healthcare/chronic disease forums, and online blogs, that often have no (or very little) QC mechanisms, the information may be misleading. Other examples of social media forums that harbor information include:
- Job postings for clinical trial managers, educators and the like are listed
- Tracking traffic on Twitter over time allows one to identify the drivers behind peaks and lows in the “disease conversation.” Activity can be measured to reveal how audiences interpret individual messages and whether a certain event has generated a lot of conversation
- Announcements of educational programs for a new drug or treatment regimen, region by region, are made available and can be “Liked”
- Names of Key Opinion Leaders who are advising the groups are often made public and can make them targets for media questions and even attacks
- The ability for healthcare professionals, chronic disease patient advocacy groups, medical organizations and life sciences companies, large and small, to connect with one another has led to an unprecedented swath of global networks.
- Innovations in treating, monitoring and diagnosing chronic disease, the activities of life sciences companies, and job postings are now out in the open, generating much commentary, debate and unprecedented movement.
The limitless array of chronic disease information, and equally prevalent misinformation, is growing, and is likely to grow even more. It’s a blessing and curse to have this myriad of offerings; it seems almost counterintuitive that we have so much information at our fingertips that we’re now paralysed by it. What’s needed most of all in this era of Big (and even Bigger) Data are filters and a means of interpretation. We need a way to group and identify easy-to-understand patterns to make any sense of this Brave New World. In monitoring the online activity around chronic disease, we have the means to see how healthcare organisations and life science companies (and their competitors) are positioning themselves, how they’re perceived and the patterns of their movements, allowing us to extrapolate every move they make out in the open.
Social Media - Add a Grain of Salt
I’ve always used social media forums in my market research, primarily to understand the patient perspective (which I find are often times neglected in the market messaging). However, patient forums and social media can also be misleading, and need to be analyzed carefully when used in market research analyses.
In the past several years, the Internet has become a virtual medical library for health consumers; and social media and patient forums are a great source of information for patient experience (good and bad), as well as what information/attributes patients (as consumers) are looking for in a drug. At times when physician and patient perspectives on certain therapies/clinical endpoints do not align (for example, a physician may focus on a symptom or clinical endpoint put forth by thought leaders or FDA guidelines, while to a patient another efficacy endpoint may be more beneficial in terms of quality of life), social media forums are a great source of information from the patient perspective.
By Leonard Fuld + Adi Reske