People have long been comfortable sharing thoughts and feelings online on just about any topic. These days this extends to their health.
Online Communities provide an opportunity for us to get closer to patients and understand their needs and concerns – particularly when it comes to sensitive, stigmatised therapy areas. Some with HIV or erectile dysfunction, for example, may feel uncomfortable talking openly, face-to-face. An online community goes straight to the truth.
One of the main benefits for Pharma is that participation is completely anonymous. So people can air their most private thoughts without fear of being judged. We create a safe, nurturing environment where people can interact with their peers, and feel relaxed and reassured sharing their experiences – knowing they’re amongst individuals who face common challenges in their lives. Extended, open conversations give patients time and space to reflect on their personal experiences, which is difficult to achieve in traditional, time constrained interviews or focus groups.
Another key benefit for the Pharma world is that they provide a better understanding about the course of a chronic disease. Traditional groups or depths show a snapshot when talking to a patient – we simply don’t know if it’s one of their good or bad days. This can strongly influence what they tell us about the day-to-day impact of their condition, particularly as most chronic patients tend to normalise symptoms and experiences. When they share their experiences in a community over time, we get a genuine understanding of how they are affected day-to-day by their condition. We see their highs and lows as well as the wider context.
These experiences can be brought to life through written responses, photos and videos. Using rich media we can get to know them over an extended timeframe as “real people” rather than patients.
Online communities offer practical benefits as well. Many diseases result in patients being housebound (e.g. RA, MS) or unable to interact physically with others (e.g. Cystic Fibrosis) and left with a feeling of isolation. Participating in a community allows them to share their experiences in a way that’s convenient for them and to participate on their own terms: in bite-sizes pieces if that works better for them or with lengthier blog type postings.
With rare diseases it is often logistically impossible, or prohibitively costly, to run traditional face-to-face groups or central location research. An online community can overcome this problem of geographic dispersion, bringing together people from all over the country and giving us better, richer access to these less researched individuals.
It’s a common cry from patients that ‘nobody’s listening’. Online Communities allow pharma to listen. And for patients to be heard.