Bringing the patient’s voice into the boardroom

Market Research Online Communities (MROCs) or Consumer Consulting Boards, as we like to call them, have become increasingly popular in recent years as a qualitative market research method. At InSites Consulting, we conduct hundreds of consumer communities every year for global, national, as well as regional brands. But, what about patient communities? Traditionally, the healthcare sector is conservative and very traditional in terms of market research methods, especially compared to for example Media and FMCG companies… However, exciting developments are taking place in the field of healthcare market research! Read on to find out more about how we take healthcare companies to the future.

Exciting and dynamic field of research

As recently noted by Jon Freeman of Synovate Research at a workshop of the British Healthcare Business Intelligence Association (BHBIA), healthcare research is an exciting and dynamic field of research. With healthcare budgets under pressure, aging populations, increasingly empowered patients, and promising health apps to further empower the patient in self-management, there are a lot of interesting developments going on. Developments that drive change.
From a market research perspective, perhaps one of the most exciting recent developments within healthcare and life sciences is the emergence of (natural) patient research communities on the one hand and an increased openness of the pharmaceutical industry on the other hand to set-up their own research communities.
Through InSites’ engaging methods, we no longer only bring the consumers’ voice into the boardroom; we can also (re)present the voice of the patients as we get to know them and their world, expectations, and unmet needs. But, what are actually the differences between a consumer and a patient and their respective communities?

Consumer versus patient

The most fundamental difference between the consumer and the patient community is the experience and perception of the participants. Consumers are interested in the theme of the community and the topics under discussion. Patients are interested in the topics out of a deeper personal involvement and experience; they have often been living with a disease or disorder for years, strongly influencing their life.
This deep involvement of the patient, coupled with the prospect of gathering on a closed online community with ‘fellow patients’, is what makes patients enthusiastic to participate. The resulting mutual understanding, solidarity, and sometimes even camaraderie among participants strongly stimulate community activity and open communication about topics that are often sensitive in nature. As one health community member wrote after one such community: “To be honest, I miss it. We were strangers to each other but we started to recognize each other after some time. It felt as if we were all related, brothers/sisters in arms”.

The elephant in the room: adverse events

Another significant difference between a patient and a consumer community is the amount of rules and regulations they are subject to. Pharmaceutical companies are bound to legislation, including particularly strict regulations governing communication to patients. Moreover, adverse events are naturally a very sensitive topic and a potential deal-breaker for any health community. After all, the community might discuss your products, and even bring up and discuss adverse effects.
In practice, however, we see that these worries are not grounded in the reality of an actual community. In one recent community we carried out, for example, a grand total of 1,717 photos and texts were posted by some 50 patients during a 3-week community. Only 4 adverse events were mentioned, all of which were posted in private rooms only visible to the participant and the moderator. Such ‘results’ are of course achieved by carefully crafting a conversation guide, while also daily monitoring possible mentions of adverse effects.

Stakeholder & participant satisfaction

So, what does a health community deliver? More important perhaps than in other areas of market research, our health communities not only meet and exceed clients’ expectations, but also turn patients in happy and engaged community members & health consumers. Some indicate that for the first time in years they actually reflected on their disorder or disease. Others cherish the experience of talking about their medical issues with other people in a convenient and closed online environment.
Of course, at the end of the day it’s the result for our client that matters. It is exactly this result that comes from connecting patients in a community and ‘bringing’ their voice into the boardroom!

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