The mission of turning data into knowledge is a key aim of DNA Digest. And the key point of this knowledge is to help patients. This sentiment is echoed by healthcare cooperatives such as Our Health Data Cooperative. As outlined on their website they want to create a transparent organisation which is owned by their members. All members anonymously share their health records in order to create “a valid comprehensive evidence-based clinical research database”. These initiatives aim to use data which already exists to the best of its ability. So much healthcare data is constantly generated and yet it is unable to be used in a way which maximises benefits to those who are most important, the patients.
The promise of personalised medicine has long been hanging in the air. Research has shown that to harness the potential power of technological advances in genome sequencing, mobile health and environmental data, millions of personal health data sets have to be aggregated. Healthcare cooperatives are a way of tackling this challenge. They provide further evidence of the importance of making data available and engaging patients. The Genetics Clinic of the Future workshop generated a graphic exploring the changing role of the patient with the advance of genomic technology. As with the Health Data Cooperative model, the graphic highlights how patients really are the ‘main entrance’ – they take centre stage.
Aggregated data will bring health related and financial benefits and the idea of the Health Cooperative enables individuals to contribute to this objective.