We have all felt the frustration of googling a symptom and trying to navigate long, generic lists that usually don’t have anything relevant to your specific situation. There is always scientific literature, but this is often either behind a paywall or written in language so complicated you might as well engage the services of a translator.
The problems with research
Academia has long been criticized for generating paper after paper with little thought on how the information contained within those papers will actually reach the people who need the information. On average, it takes 17 years for research evidence to reach clinical practice. Imagine receiving a diagnosis today and not having access to the best research for 17 years. In many cases, this is simply too late for the research to have a meaningful impact.
Even if your doctor has had the time to read the literature, has found something relevant to your condition, deems it of sufficient quality to share the findings, and remembers to bring it up during the consult - even after all of this - the information contained may still be offered with some sort of caveat. For example, “This study investigated adults, but it MIGHT be relevant for your child”. “Might be” is a scary phrase in this context. This doesn’t even touch on the huge data gaps that exist in research for women, people of color, ethnic minorities, people with disability, LGBTQIA+ people, and the list goes on.
A new age for research with Human
At Human, we are creating a new research system where the people who are going to be most affected by the research (i.e., the people living with complex conditions) get to be in the driver’s seat. When you sign up to Human, you have the option to consent to participate in our observational study and submit a research question that you want answered.
By participating in our research, you’ll be playing a vital role in unlocking new information on what works for you and others with complex conditions. You’ll be the first to learn about our research findings, and we promise to share these in a way that everyone will be able to understand – no science degree needed! Findings will also be published in the app, so that the research you help to generate can help others in a similar situation. We’ll also publish in academic journals so that other researchers can benefit from our findings and build on our work. But don’t worry - we will never publish anything identifiable.
How we are planning to create private and independent research
The privacy of our users is our highest priority. So while your insights will be personalized for you, our research team will never have access to your personal identifying information, such as your name or email. Your insights will be grouped with everyone else’s to help us understand on a large scale what’s working, and what isn’t.
We want to make sure our research is independent and of the highest quality. We’re teaming up with world-class researchers from leading universities like Stanford, Harvard, Berkeley and Monash to help guide our research and ensure it is secure, ethical and impactful.
We aim to create research that benefits all of our users. No one knows your health journey better than you, so we hope you can help us unlock important insights for everyone and ensure we meet this important aim. We will be launching our first research project soon and we hope you come along for the ride. Look out for more information soon!