The Open Psychiatry Project: a co-produced web interface and platform for mental health omic data and federated data analysis

Mental health conditions are common and have a huge impact on people’s quality of life and on the economy. For many patients, successful treatment remains difficult to find. We know from genetic studies that genes, cells and molecules are important in causing symptoms, but there are no personalised treatments available for patients based on measurements of these ‘biomarkers’. While many studies are now trying to address this by measuring these biomarkers in large groups of people, the data often remain inaccessible to patients, researchers and industry, unless they have gone through lengthy application processes to access this information. This makes it slower to develop successful new treatments (only 20 new FDA-approved mental health drugs in the last decade). We want to connect together, safely, data that is currently hidden away. The Open Psychiatry Project will make a website displaying interactive summaries of the results of many studies of genes and biomarkers in mental health, without the privacy risks involved in data about individuals. This will be the first time that multiple real-world biomarker datasets are brought together in an open, accessible way. We will also test ways to allow researchers and patients to ask their own questions about these datasets in a way that does not allow users to see the personal data on individuals - this technology is called ‘privacy-preserving data federation’. Federation means a way of looking at information which is stored in different places all together - making it quicker and easier to work with it, and helping ensure there are enough samples from under-represented groups for the results to be meaningful for everyone. By doing this, we hope that UK data on genes, molecules and mental health can improve our understanding of mental health in different groups, and lead to new treatments. By providing this infrastructure to users, we aim to speed up the science, commercial development and patient involvement that will help health professionals to take an individualised approach to treatments in the future, where blood tests could be used to help determine which treatments are likely to benefit you personally. We want industry to be able to access this data to help them develop new treatments for patients. The public are concerned about this, so we will ask them to help us make sure this is done in an ethical and transparent way. Industry will not have access to personal information on individuals, only data summaries. Patients from across the UK have co-developed these plans, and will partner with us throughout the project. A diverse group of adults and young people with lived experience and understanding of how to make information more accessible will co-develop the website and resource. They will work alongside academic researchers, software engineers and data specialists. All team members will work to explain our progress and promote the use of our resources by patients and the public, as well as by academic and industry users. We will also support patients to work with the data to answer questions that are important to them.