Next, we try to answer some questions about H2O that may go through your mind, as a patient, carer or patient representative.
What is H2O (Health Outcomes Observatory project)?
- H2O is a public/ private partnership that aims to set up patient centric national pan-European observatories to strengthen the voice of patients in the individual relationship with their healthcare providers, but also in health systems more broadly.
- This is the first ever attempt at collecting and including patient outcomes in healthcare decision making at scale.
What does the H2O project focus on?
- The project will establish health outcomes observatories in Germany, Spain, Austria and the Netherlands; and it will focus on three disease areas: Diabetes, Inflammatory Bowel Disease, and Cancer.
- H2O will strengthen the patient voice by providing patients with tools to measure their health outcomes (or measurements) in a standardised way, and at the same time giving them full control of their data, including deciding who can access it.
- If patients choose to share their data, it will be anonymised and stored securely.
What are the long-term goals of the project?
- In the long-term, H2O aims to help patients have better communications with their providers and create transparency of outcomes; This will help all stakeholders better understand how to improve patient care.
- H2O will also aim to establish a wider range of observatories in more countries and covering more disease areas.
What is the importance of H2O for the patient community?
- Often, the way diseases are measured is largely based on input from clinicians.
- Because of this, these measurements (or outcomes) do not necessarily include the experiences of the patients, and the impact of a disease on their life.
- The aim of this project is to create a framework that incorporates and amplifies the patient voice both in their own healthcare and in healthcare systems more broadly.
- By creating this framework, H2O hopes to:
- improve the dialogue between patient and healthcare provider, so that patients receive better care;
- improve healthcare professional’s access to data to inform their clinical decisions;
- and ultimately improve the quality and sustainability of care based on outcomes that truly matter to patients.
Who will use the patient’s data?
- The patient may choose to share their data with their doctor or other health care provider so that they can have better communications and discuss their progress and outcomes.
- Patients may also choose to allow their data to be included in an anonymised pool of data that will allow researchers to get better insights about their disease, possible treatments or quality of care..
- One of the roles of the observatories is to ensure that this data is accessed ethically. It will therefore be made available to stakeholders that have a legitimate interest to use it for scientific or policy research.
- This information can help researchers understand the disease better and find possible treatments, help policy makers identify how to improve care, help doctors understand what matters most to patients, allow companies to develop new therapies, and guide society on how to best use resources to improve healthcare.