PharmaPhorum recently ran an article written by Brian Loew (Inspire CEO) and Sharon Terry (President and CEO of Genetic Alliance) about the role that online patient support communities play in bringing together rare disease patients and biomedical researchers. It is fairly well known that for individuals with rare diseases, online communities provide an opportunity to meet others with the same condition, share their experiences, support and learn from one another.
Those shared experiences are also valued by the researchers. In that regard, there is an opportunity for patients and researchers to come together and meet each others needs, as Loew and Terry point out:
“Isn’t it then a perfect union to join the lived experience of these individuals with the researchers’ interests? In our minds, the right way to succeed is to first engage large numbers of people affected by conditions and diseases to determine the questions key to their health and wellbeing. Then, invited to participate in relevant research, patients are much more motivated and supportive. In this way, researchers get what they need: access to very specific, highly motivated patient populations, and patients get what they need, too: the feeling that they are real participants in and contributors to research, and not just along for the ride.”
What researchers learn from the experiences of these individuals in rare disease online communities could go a long way toward helping them better understand the condition and its manifestations. And there is much to be learned:
“Rather than too little information, the rare disease community is faced with an abundance of information. Important mechanisms are emerging for making sense of that data, and combined with medical records, lab values and images, it creates a much better basis for research on these conditions.”
In the end, Loew and Terry see rare disease communities as ideal partners for launching a new model for the development of novel therapies.
“Rare diseases are a perfect place to create a new and productive model. Creating the new research and business models that will allow data sharing, mining negative results, and alignment of incentives to accelerate discovery and development, is essential.”
Of course, an important part of that model involves the patients becoming partners in the research process: Providing them “a safe space, allow the individual to determine his / her comfort level with sharing and assure of privacy and confidentiality. Giving individuals the space and time to discuss their conditions with others begins to elucidate some of the important manifestations of the conditions.”