oneSCDvoice.com is an online community built by the sickle cell community for the sickle cell community. Pfizer, rareLife solutions, and numerous patients, advocates and caregivers (including community-based organizations and patient advocacy groups), formed a coalition to build a next-generation digital community that has: (A) a smart social wall, (B) trusted resources library of curated links from the "best of" the internet, and (C) clinical trial education.
The social wall is "SMART" because rareLife's "cybrarian software" reads the posts and conversations, understands the topics, retrieves valuable links from the trusted resources library (that have been pre-vetted by the community of experts), and inserts those links directly into the conversation. This invites members to continue to receive credible information at the precise time they are most ready to absorb deeper learning.
We have built a number of these platforms in rare diseases for and with advocacy groups and industry partnerships - its the current evolution of online community, and fits special needs common among rare diseases - emotional support, trusted knowledge (we do the research and evaluation of the IoT for the community), and information allowing greater education and consequently access and interest in clinical trials.
To create a "one-stop-shop" for patients, advocates, caregivers and HCPs to support one another, have ready-access to credible information and learn how to advocate for themselves. The goals of this initiative are to (A) gain insights into the community over time using analysis of (1) natural language search of user-generated content, (2) metric data for content preferred and absorbed vs. eschewed and not absorbed, (3) regularly updated polls and surveys on topics generated from the community preferences and (4) feedback from community leaders who are guiding "working groups" that regularly meet and inform platform content and features, (B) coalesce a fractured advocacy landscape of over 150 various CBOs and PAGs by giving them a "neutral" site to meet and educate, (C) understand the value of a "monitored" social wall with professionally trained community managers vs a un-monitored social wall, (D) organically grow the responsibility of self-advocacy among the membership through examples and opportunities to advocate, and (E) uncover unmet needs of the sickle cell community.
Problems addressed by Initiative
Creating a customized "home on the internet" for a particular rare disease that provides: Emotional Support, Credible Knowledge, Clinical Trial Education