Today, many measures of disease (and disease outcomes) are based largely on input from clinicians. As such they do not fully capture patients’ own experiences of the disease and its impact on their lives.

The aim of H2O is to create ‘health outcomes observatories’ that will amplify the patient voice both in their own healthcare and in healthcare systems more broadly.

The health outcomes observatories will work by providing patients with digital tools, including an app, to report their health outcomes in a standardised way. Patients will always maintain control of their own data and will decide who can access it. At one level, the information will help clinicians and patients to make better decisions on their care.

Meanwhile, the data will be anonymised and tracked so that individual patients and their clinicians can compare their progress with other patients with similar health issues. This aggregated data could also form the basis of research into new, innovative, evidence-based treatments.

The project will focus on setting up health outcomes observatories in four countries (Germany, Spain, the Netherlands, and Austria) covering three disease areas: diabetes, inflammatory bowel disease, and cancer. In the longer term, the project hopes that more observatories, covering a wider range of disease areas, will open up across Europe.