{"id":33033,"date":"2020-01-15T03:00:18","date_gmt":"2020-01-15T02:00:18","guid":{"rendered":"https:\/\/www.cde.ual.es\/?p=33033"},"modified":"2020-01-20T11:02:05","modified_gmt":"2020-01-20T10:02:05","slug":"h2020-jti-imi-2019-health-outcome-observatories-empower-patients-with-tools-to-measure-their-outcomes-in-a-standardised-manner-creating-transparency-of-health-outcomes","status":"publish","type":"post","link":"https:\/\/www.cde.ual.es\/en\/h2020-jti-imi-2019-health-outcome-observatories-empower-patients-with-tools-to-measure-their-outcomes-in-a-standardised-manner-creating-transparency-of-health-outcomes\/","title":{"rendered":"H2020-JTI-IMI-2019. Health Outcome Observatories: Empower patients with tools to measure their outcomes in a standardised manner creating transparency of health outcomes"},"content":{"rendered":"

Structured health data is invaluable for all stakeholders, from the individual patient, healthcare professionals (HCPs), the life science industry, and policy makers to the patient advocacy groups. There have been a few successful examples of approaches to integrate patient-reported health data into clinical care.<\/strong><\/em><\/p>\n

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Specific Challenge<\/h3>\n

1. Patient outcomes and their experience of healthcare, and thus their overall care, could be improved through systematic capture of the patient voice and perspective.<\/p>\n

2. A reward system that truly focuses on value requires measurement and transparency of patient outcomes.<\/p>\n

3. There is a lack of models for capturing and managing patient-reported health data in an ethical and sustainable way.<\/p>\n

Scope<\/span><\/h3>\n

The main goals are:<\/p>\n

1. Identify appropriate standards for capturing the patient perspective when measuring health outcomes and patients\u2019 experience of healthcare, and obtain support for these standards among relevant stakeholders.<\/p>\n

2. Implement appropriate technology solutions (including adopting existing technology where appropriate) that would allow individual patients to record and measure their outcomes according to these standards and use the information for a more structured dialogue with their HCPs.<\/p>\n

3. Establish the appropriate platform to collect, process and manage data in the best interest of patients, patient organisations, health authorities, healthcare professionals, the research community and health care payers.<\/p>\n

4. Create a sustainable, socially acceptable and ethical model for the continuous collection of data and an appropriate model for providing access to the identifiable or anonymised or aggregated data to researchers with a legitimate interest in analysing them.<\/p>\n

These goals can be achieved through the creation of health outcomes observatories in three selected disease areas: diabetes type 1 and 2, inflammatory bowel disease and cancer (side effects of chemotherapy and immune-oncology). The observatories will collect health data in at least three different European countries for each disease area.<\/p>\n

Expected Impact<\/span><\/h3>\n

1. Enable individual patients to:<\/p>\n