I first approached Tom and Audun about working together with the hopes of highlighting various patient communities, validating efforts of patient community collaboration, and using data to support the narrative that the patient voice is unique, and must be respected. What evolved from those initial talks was the idea of building a community around data. Specifically, starting a new conversation with the online patient community about the data they are generating every day, every hour, and exploring how they might be able to use that data themselves.
As you’ve hopefully seen, I’ve already started exploring the first part of that mission – looking at new year’s conversations, World Diabetes Day, and the impact and influence of #hcsm. There are plenty of topics to investigate, and I look forward to sharing what I discover with all of you.
But the second part of my mission, exploring how the patient community can use data collected by Symplur, hasn’t been publicly discussed – until now.
Traditionally access to Signals has been limited to large academic institutions who are interested in conducting formal research projects, very large healthcare systems, multinational healthcare industry related agencies, and government offices. Starting today, that list expands to include access to the online patient community.
Symplur has created an access model designed specifically for the patient community. Who are your community’s biggest influencers? Which tweet chat topics have generated the most conversation? What are other patient communities saying about similar topics? What else are your communities talking about beyond the typical and assumed topics of conversation? These are a mere introduction into the types of questions you will be able to answer.
In addition to the mountains of data you’ll have access to, Symplur has created a Knowledge Base and forum community to help answer any questions you have to help you along your journey. The best way to build a community around data is to enable that community to learn from us, and each other. It is my hope that the tools Symplur provides will start new conversations about the strength, prevalence, and impact of online conversations among the patient community.
To learn more about how your patient community can take advantage of Symplur Signals, please fill out this short form, and I’ll be in touch.
One Response to “Symplur Signals for the Patient Community – Starting a New Conversation”
Annette McKinnon
That sounds as though it will be a great tool of discovery. The patient voice is unique, and often just gets rolled in to the larger conversation. As patients become more serious and focused in their efforts and move the conversation up the levels working for change it will be helpful to have data to support us.
Though there are signs of improvement I see more and more literature about patients as subjects or pawns, and larger organizations are selling products to “use” the patient voice their way. They are working hard to keep us removed from a place of influence. (Thinking of pharma – Merck has a subsidiary to do this, and gov’t)