One of the decisions our customers face early on, as soon as they've decided to launch an online community, is public or private?
We designed the CareHubs plaform to support both private and public use-cases from day one. Our initial expectation was that most client communities would use a hybrid model with some sections of the community being public and others being private, based on their configuration.
However - our customers have, to date, taken a much more privacy-centric approach than we anticipated and required fully private communities.
While we understand and completely respect their position, it does cause them and their patients to miss out on a number of opportunities, the most important of which is discoverability.
A great example of this potential is the story of “the SCAD ladies” of Mayo Clinic (see this news story for a brief overview.) The CEO of Inspire credits the SCAD Ladies’ success to the fact that Inspire is an open community. Because it could be crawled by search-engine spiders, it allowed other patients to find their conversations via Google queries and come together into a community.
The user-generated content in social media has the potential to be of enormous value especially, though not exclusively, to the rare disease community. This is due to the way search engines currently work: specifically, it’s extremely difficult for a page to rank well in the search engine results for a given phrase if that specific phrase doesn’t exist on the page. However - - the way medical experts write when describing a condition and the way patients write when describing it themselves are often radically different.
Patients writing together about their conditions in their own words in an open and indexable community provides exactly the content needed to allow people looking for answers around their medical conditions to more easily find each other.
We built our business around the needs of healthcare professionals and have invested substantial time and resources into being able to offer a platform that meets HIPAA and CMIA compliance requirements where needed for clinical applications. That being said, we're incredibly excited by the potential of more open online healthcare communities to serve the greater good and look forward to launching more of them in the coming months and years with our customer and partner networks.