Customer Corner – Raremark
Note: Empowering rare disease patients through access to trustworthy information Alex Garner, Product Owner at Raremark and guest blogger, recalls how the digital service for people living with rare diseases came to partner with Deep Web Technologies.
At Raremark we challenge ourselves to inform, educate and empower patients, carers and families affected by rare diseases. As you can imagine, having a rare disease or caring for a loved one with a rare disease, defined as a condition affecting fewer than 200,000 people in the US, can be a lonely place.
In common medical conditions such as diabetes, a simple Google search will return a rich set of content and opportunities to connect with other patients or carers, as well as online forums and other resources from which to learn and stay up to date with the latest research. In addition, because type 2 diabetes is an epidemic in most western societies, the topics of treatment and research are often at the top of the agenda for most health systems, healthcare professionals and companies operating in this sector.
For rare diseases, the situation is inverted. With around 7,000 known rare conditions worldwide, combined with low prevalence of patients diagnosed, it is impossible for health systems to treat and serve all rare disease patient populations effectively. It also means that when a patient or carer performs a traditional web search for the condition they’re interested in, they’re unlikely to find good-quality information or be able to connect with others in a similar situation. This isn’t to say quality content is unavailable on the web – it is just hard to find.
We approached Abe Lederman, founder and CEO of Deep Web Technologies, after hearing about the company’s services from a contact who was working with Harvard University. At this point, we’d already experimented with our own bespoke unified search algorithms over a single source (with mixed success). In addition, we were performing daily manual searches across high-quality knowledge bases, such as PubMed and ClinicalTrials.gov, and relaying any updates to our growing user base. As you can imagine, this was quite a time-consuming process that couldn’t be scaled. As our conversations became more serious, we were lucky enough to catch Abe in London as he was passing through to visit a leading university. It was great to hear how Abe started the business and how it has evolved over the years. This meeting convinced us that a partnership made sense.
Our one concern was user experience. We understood the benefits of federated search, but we didn’t want the user to have to jump between different user interfaces. And it was important they had a consistent experience with our brand. Thankfully, Abe and his team have a solution for this. The Restful API service that comes as part of the licence fee is accessible and stable, and it provides the same level of control as the Deep Web user interface.
Now, if a user performs a search on our site, not only can they browse a growing knowledge base published by Raremark, but they can also seamlessly search across external knowledge bases that are not optimized for SEO and otherwise difficult to find.
We were impressed with how easy and smooth the implementation process was. Abe and the team were quick to respond to any questions. We are looking forward to scaling Raremark with Deep Web Technologies as a partner.
Editor’s Note: You can join a Raremark community and/or search their resources at Raremark.com. Here’s a screenshot of the search results for morphine at their Myasthenia gravis community.