It’s been a while since I posted about my debacle with sickle-cell disease (SCD), a painful and debilitating blood disorder. In the past, I found it difficult to write about this disease from a personal perspective, without some sort of pessimism about the sobering realities sufferers like me face.
Today, however, I want to share positive news of an online platform that will soon be available for SCD patients and their loved ones. OneSCDvoice is set to launch this month, and I am personally excited about how this platform will benefit both SCD patients and the organizations which serve them.
There are two great features I want to discuss here: Trusted Resources and the SMART Social Wall. I’ll start with the SMART Social Wall, where SCD patients can talk about their experiences in an online setting.
I’m optimistic about the online aspect here, since it eliminates the physical and environmental constraints faced by SCD patients who would otherwise have to travel to meetings and events in order to assemble and network with other patients like themselves.
The Trusted Resources feature, which is basically a trove of credible resources and information related to SCD, is also really attractive. The health tech group that created OneSCDvoice, rareLife solutions, has a software that “analyzes” social posts and then culls Trusted Resources for relevant and useful content it can then organically insert into the Social Wall conversations. I think it is always wise when organizations are able to bring the resources to the patient and not vice versa.
Many with SCD find it difficult to get the information they need. Sometimes, we simply don’t know where to look. Other times, the process of getting the information is both laborious and intimidating.
While few have the time and willpower to scour academic journals and clinical studies, OneSCDvoice seems to combine that expertise and scholarship with a bottom-up, grassroots approach that puts the community front and center. We all know that this information is out there, but people need to feel like they are part of the equation.
I know this entire post feels like a sales pitch, but I haven’t been paid a penny to write about this. I am very grateful that someone brought this to my attention, so that I can spread the word to others who, like me, were not even aware of this.
A number of nonprofit groups are involved in this effort and, as I mentioned earlier, I think this platform has a lot of potential to benefit everyone in the equation, from patients to researchers and everyone in between.