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
Quality of patient engagement
Each member had their own individual assignment based on their experience, talent and interest, in addition to assignments given to all members (for example, features, functions and “look and feel” of the platform). Advocates were focused on engagement tactics while healthcare professionals and researchers were focused on guiding the oneSCDvoice.com resource research team).
Feedback was garnered through multiple avenues – surveys, individual & group meetings. During these meetings the oneSCDvoice.com team would address questions and request guidance from the Working Group member(s). Members of the Working Groups received copies of the analyzed and raw data for their own review, consumption and comment.
Having a pre-built framework for the Working Groups and submitting elements of it to the Working Group for review and comment, proved a powerful step forward in efficiency to move from planning to iteration and then actual deployment.
What is your stated “shared purpose”?
oneSCDvoice.com is specifically designed to empower its members to "self-advocate" through learning by example and by having a peer support group and trustworthy resources at their fingertips guided by expert advocate mentors from the Working Groups.
How did you confirm with all stakeholders that your purpose is understood, that
contributions have influenced the original plans and that disagreements have been
Confirmation of the value and influence of the Working Groups, both individually and as a whole, is sought and procured through individual conversations, group meetings, survey results and iterative acknowledgement on the development of the platform which is shown to and accessible by the Working Groups during development and after deployment. Every quarter, the oneSCDvoice.com team meets with the Working Groups and prepares reports demonstrating how the feedback provided at earlier meetings has or has not been addressed in the platform.
Have you reviewed the shared purpose and its understanding among stakeholders?
Yes. The oneSCDvoice.com model is built on the foundational dependency of integrating multi-disciplinary leaders (patients, advocates, caregivers, healthcare professionals and researchers) on to the Working Groups to ensure balance and coverage of the topics and expertise of topics relevant to the actual community members who are learning to self-advocate. The purpose of developing “self-advocacy” capabilities for the community members is paramount, shared and acknowledged by the Working Group members. Such agreement is parsed out during an interview process and memorialized in a written contract with each individual member.
At which time points?
Potential candidates are introduced to the concept platform and invited to apply for the Working Groups. We meet regularly with the Working Groups. At each meeting, the Working Groups are given updates followed by discussions or demonstrations to advance to the next milestone. In addition, at each meeting, the focus for each discussion is: “Is this what the community needs and/or wants?”
Results and outcomes
Founder & CEO at rareLife Solutions
South Norwalk, United States
South Norwalk, United States