Patient forums and expert groups – a hot potato?
Web 2.0 patient communication is subject to a series of special regulations in the pharmaceutical industry. Many companies are afraid to touch this hot potato and therefore completely forgo Web services for this target group. As a result, they miss out on many opportunities. TWT Digital Health has specialized in this area for many years.
The Internet is an important medium for product development in many industries. In forums, developers can communicate with users and learn what works well for use in everyday life and what does not. This knowledge can flow directly into the next generation of products. There is hardly a better optimization tool for short product cycles.
However, in the pharmaceutical industry, not only are product cycles extremely long, there are also many legal requirements that restrict communication with customers.
Special challenges in the health and pharmaceutical industries
Companies have to document and keep track of every drug safety message. This also applies to other information, for example, information that companies publish on their own patient Internet forums. In forums with high numbers of users, this becomes a mammoth task and a nightmare for any information officer. In spite of this, there are good reasons to run a patient forum, according to Anja Fink, Project Manager at TWT Digital Health: "For example, one of our customers has been operating a forum for neurological symptoms for over 10 years together with a specialist clinic. With over 5,000 registered users and more than 8,000 subject threads, the forum has become a very active community."
A patient forum?
The advantages of a forum are clear: Other affected users are often the best advisers in everyday problems, responding quickly and competently. However, the effort involved is also relatively high. TWT Digital Health monitors all forum posts in due course and forwards those requiring attention to the clinic partner or company – very important in cases of ADRs (adverse drug reactions).
"In addition, we provide a kind of management summary at regular intervals, in which product management can see which topics are currently being discussed the most. For the customer, this completely justifies the investment," said Anja Fink, adding, "Patient forums are social media in its purest form, even though they originated in a time before the term social media even existed."
Or an expert group?
There is also a simpler alternative. An expert group is like a light version of a forum. Here, the posts are not immediately published online. Rather, they are first reviewed by experts, usually clinicians experienced in the medical symptoms and having an affinity with the Internet, who then publish the posts together with their replies. Thus, meaningless posts that can sometimes find their way into forums are eliminated. Using the system developed by TWT Digital Health, the expert can also decide whether to reply to the post personally or to publish it. Klaus Mueller, Managing Director of TWT Digital Health, looks at the issue pragmatically: "Whether you employ a user forum, an expert group or neither, depends not only on the type of symptom, but also on the overall strategy of the company. Many pharmaceutical companies talk about how they want to offer solutions for health problems rather than only sell drugs in the future. But they do not know how. A patient forum is a good example of how this can be achieved, and we have implemented two flagship projects in recent years."
Security and data protection
There is much to consider: from the protection of patient data, to the management of spam posts, through to the legally compliant documentation of safety-related messages. However, there is hardly a better way to receive so much unfiltered feedback from users. Mueller knows this from experience: "Every pharmaceutical company is well advised to keep an open mind when it comes to discussing Web 2.0 patient communication. Although there are no quick out-of-the-box solutions, each company has its own approaches that can be successfully developed further."