SCOPE 2018: Online Health Communities Fill Gap Between What Patients Want, Researchers Need

When Health Union CEO Olivier Chateau worked previously as a marketer in the pharmaceutical industry, he was often involved in meetings to scour quantitative data. This data produced information about individuals’ experiences living with chronic conditions, such as the prevalence of particular symptoms, and the attributes of a pharmaceutical product that people with these conditions might find attractive.

HU Booth at SCOPE 2018 for patient insight

Health Union’s booth at the SCOPE 2018 conference.

As Chateau spoke during a presentation, titled “Online Health Communities: A New Frontier in Clinical Research,” on Feb. 15 at the Summit for Clinical Ops Executives (SCOPE) conference in Orlando, he admitted there was something crucial missing from those meetings. While they were designed to analyze what certain patients want, there was no actual involvement or insight from the patients being discussed.

This patient-centric knowledge gap, as he and co-presenter Health Union COO Lauren Lawhon explained throughout their presentation, signifies the incredible opportunity online health communities have to advance clinical research. Whether seeking to gather real-world evidence, conduct observational research, or recruit patients for a clinical trial, these communities, such as the 17 (and growing) cultivated by Health Union, can become true hubs for medical innovation – tapping into the wealth of information and insight gleaned from the interactions that occur among members.

Online communities fill a void for people with chronic health conditions, offering information, emotional support and connection to others with common experiences. By fostering relationships with members of these online health communities – through relevant content and engaging social conversations that touch on and validate the personal experiences of living with certain chronic conditions – Health Union has the rare opportunity to more accurately understand the concerns of people with these conditions.

As such, companies like Health Union are also in a unique position to enhance the lives of these individuals. One key way is by helping to increase the amount of valuable input patients can have in the clinical development and study design process.

Patients want to be actively involved in clinical research. Health Union’s data shows that nearly 70 percent of people engaged with its communities are interested in clinical trials and are more likely than the general population to participate in such trials. And yet, only 12 percent of interested patients have participated in clinical trials. While this is much more than the generally accepted participation rate – roughly 3 to 6 percent – it is clear there is a significant disparity between interest in and active participation from individuals in research studies.

As outlined last year by Health Union’s Chief Community Officer Amrita Bhowmick, patient insight is key to providing treatments and solutions that truly meet people where they are. Instead of simply answering the questions of what people are doing or experiencing, this insight fills in multiple gaps of why people behave a certain way and how those experiences affect them.

As a result, there is an opportunity to strengthen a previously static-filled connection between what people living with chronic health conditions want and what researchers need.

By partnering with companies like Health Union that create deep relationships with patients, clinical researchers can connect with these active, engaged healthcare consumers in ways that tap into every aspect of life with various chronic conditions. These partnerships will enable the healthcare industry to take pivotal steps in colonizing the new frontier of clinical research.