Own Your Spine Health
One of Enuval’s core goals is to involve those affected by spine conditions in research that directly affects them. Many of our contributors, like Rumeysa, have often been the subjects of research but have never been involved in actually performing research. We aim to change this by transferring personal medical information ownership directly to our contributors, allowing them to use it to collaborate with others on research.
In our increasingly complex medical system, we would like to empower our contributors to take control of their health data. We feel that this will allow them to be better advocates for their care, but also stimulate new ideas and ways to contribute to improved health for those with similar spine conditions. Although there is country to country and state to state variation, most patients do not have ownership of their own health data.
Spine data is unique in that it often contains information (for instance X-rays) that are tracked over time. Scoliosis patients in particular, who make up a large portion of our contributors, often get X-Rays at regular time intervals and thus have years of sequential imaging housed at their imaging facilities. Hospitals and physicians are now also often tracking “Patient Recorded Outcome Measures” which are ways to quantify patients' quality of life including severity of pain and limits in what one can do in terms of exercise or work. While there is country to country and state to state variation, most patients can access their health data but not formally own this data. Enuval would like to change this by empowering our contributors to collect and take ownership of their own data, which they can use for self-review or potentially to collaborate with others for research of their own interest.
We are starting with a core cohort of contributors who are interested in taking ownership of their health information and creating a platform that allows them complete control of their data. They are able to combine their data from multiple sources- imaging studies (XR, CT, MRI), smart devices, and medical notes. We provide online tools and support to understand this data and then empower our contributors to think about how they might use it to tackle challenges in spine health that they find interesting with research strategies.