Patient data key to improving health outcomes

The health system has advanced in the collection of health data, thanks in part to electronic medical records, through analytical tools that allow the value of this data to be inferred, what is known in real life as data or evidence.

This has been the main theme of the fifteenth edition. pop breakfasts, a conference organized by Hea Patient Organizations Platform (POP), hosted by held at the Torre Ilunion Auditorium under the name of Abbvie. “Patient-centered evidence generation”.

The meeting moderated by José Manuel González Huesa, director of the Servimedia news agency, was attended by Rosario Perona, deputy general manager of research evaluation and promotion of the Carlos III Institute of Health; María José Faraldo, President of RedETS; head of the Innovation Unit at Hospital Clínico San Carlos in Madrid; Maria Luces; and Carina Escobar, president of the Platform for Patient Organizations (POP).

In the event, the participation and application of patients and patient associations in real-life evidence production were discussed. carina escobar pop head stressed “We are in a moment of transformation, but we must bet on transparency. Patients and organizations are another actor within the system and we need to be in the definition of indicators and variables that adapt to unmet needs. Ultimately, these data should be used to increase treatment accessibility and make better use of available resources.”

Data or evidence in real life

In recent years, we have witnessed a huge improvement in patient and citizen data. at this point, Head of Innovation Unit at Hospital Clínico San Carlos in Madrid, Maria Lucas, noted that it currently exists”certain discrepancies between data from clinical trials and real life. That is, it appears that more patients than those included in the studies could benefit from the drugs. This difference gives us the opportunity to know the evidence based on this data “Real World Evidence”“.

Regarding the collection of health data, Carlos III Institute of Health Research, Evaluation and Promotion Assistant General Manager (ICIII), Rosario Perona, I approve”We have been advancing in data sharing initiatives since ICIII. The idea is that all this data is shared on the same basis so that it can be used interdisciplinary.“. From the point of view of patients on this issue; Karina EscobarCaution “fortunately, Progress has been made in terms of patient involvement and perspectives in clinical trials or research“.

Data quality

Hospitals, agencies or associations have huge amounts of data on diseases, treatments and even patient quality of life. Transferring data collected in daily health practices to the real world is often complex. For head of redETS, Maria Jose Faraldo “Thanks to real-life data, we can know what the usual standard of treatment is. But when processing this data, we must consider the quality of this data and know whether it contains variables that interest us”.

On her behalf, Lucas stressful the importance of it “All agents involved in the development and implementation of these resources feel comfortable with these resources.. There are different models for collecting data, and it is true that an effort has been made to improve so that we can access data when we need it to respond to a patient’s problem.”

Also, the POP president added: “We are dedicated to generating data from the platform and its assets. Each of our organizations has studies that help us develop public health policies, based on patient experiences with the disease, the system, equity, and the impact of the disease on their lives.“.

future challenges

During the development of the meeting, the future challenges of this field were also discussed. Faraldo commented: “One of the challenges is to involve data science experts who help us understand and create the data we have.“. Peron, “hBecause it is essential for the patient to perceive what is being done in the studies, technology should be rationally incorporated to assist patients.”

Finally, Carina Escobar concluded: “We look to the future with optimism, working on the health of people and citizens, and on all data used for public health. The aim is to complete the years full of quality life.”