The Health Outcomes Observatory (H2O) project kicked off on 1 October 2020 with the aim to equip patients with the tools to measure their outcomes in a standardised way, whilst giving them full control of their data. This is the first-ever attempt at scale to collect and incorporate patient outcomes into healthcare decision making at an individual and population level.
And it has significant value for patients. Often, the way diseases are measured is largely based on input from clinicians; because of this, the measurements don’t necessarily include experiences from the patient and the impact of a disease on their life. By creating a framework that incorporates and amplifies the patient voice, H2O hopes to improve the dialogue between patients and doctors, so that patients receive better care, healthcare professionals have better access to data to inform clinical decisions, and ultimately, improve the quality and sustainability of care based on outcomes that truly matter to patients.
To achieve this, the European Patients’ Forum, a consortium partner of H2O, will contribute with a strong patient perspective by establishing and coordinating three project patient advisory boards. The patient boards will be made up of patients and patient representatives that consult and advise on the work of the project. H2O has Patient Advisory Boards to engage with patients from the start of the project, to provide a patient perspective and to identify mechanisms for meaningful patient involvement and input throughout the project – a key to the success and shift in paradigm.
Stay tuned for further updates as the Patient Advisory Boards take shape! You can learn more about the relevance of H2O for patients here.