Open data and health, conclusions from IODC16

One of the sectors where open data have a greater real impact is health and medical diagnosis and care. The benefits of reuse in this field are widely known and, nowadays, many public and private institutions are working on indicators and repositories of health information, languages for representing clinical data or projects that show the value of open data.

Given the importance of this area for society, the latest edition of the International Open Data Conference dedicated one of the main panels to open data and health. During this meeting, on the morning of October 7, the event focussed on two main aspects; on the one hand, finding the reasons why there is not enough information and best practices of open data in the health sector. And, secondly, analysing what would be the advantages if open data were extended in this field.

For this panel moderated by Carlos Royo Sanchez, three international professionals from the public and private sphere were gathered. Rafael Bengoa, expert in medical management was responsible for opening this debate who attracted the attention of the audience to one of the current challenges of public health systems: the empowerment of the patient. Currently, the digital revolution has brought a lot of tools that improve health management. However, integrating these technologies in the organizations still poses a challenge despite the great progress made such as telemedicine, electronic health records or telemonitoring. These steps are not enough to achieve the goal of real empowerment of the patient, and it is necessary to provide them with data. For example, in the case of the Basque Country, 50% of the population have already access to their medical histories. Thus, empowered patients are more educated, better trained, and they reuse the information they have access to and respond better to medical treatment; improving, therefore, the health system. However, though countries like the UK have already advanced in this area, this knowledge has not been extrapolated to other European territories. In fact, Rafael Bengoa took advantage of this session to highlight that although technologies have been advancing, organizations are still very immature.

In the words of Rafael Bengoa, sometimes medical professionals are not committed, as in other sectors, with the openness of health data and the subsequent empowerment of the patient. For this reason, it is necessary to keep working to make the access faster and easier, which will mean a better decision-making, and make health professionals adopt new technologies in their work. A study in 14 Spanish hospitals shows that the more doctors are involved, the better the economic stability of the center is, the better mortality rates are and the greater patient satisfaction is. The involvement of medical professionals is essential to empower citizens because they are the vehicle for further progress on the openness of health information.

After his speech, it was the turn of Johanna Pimiento, head of digital strategy in Colombia, who wanted to share with attendees at IODC16 the experience of this Latin American country in the field of open data and health. According to the expert, the current challenges of the sector in Colombia include improving health services, restoring citizens confidence and credibility, and ensuring both the financial sustainability and the quality of these services. To this end, a technological strategic plan was created whose objectives are to position Colombia as a leader in applications with social impact, especially targeting disadvantaged populations in the country and help the government exploit the potential of new technologies. Within this framework, the ICT Plan for Health has been developed, which includes several projects, as the development of an ecosystem of health applications based on open data.

Nowadays, Colombia has 245 health datasets, from 1,000 municipalities. Due to the openness of this information, new applications have been created, such as Click Salud, which helps citizens in their health decision making. For example, thanks to this app, it is already possible to compare the price of medicines in a nation where the variation is really high. This application also allows users to evaluate real-time Colombian health services, in order to analyze data and trends and improve public policies.

Also in terms of sustainable development goals (ODS), Colombia is already releasing useful data for the fulfillment of the ODS related to social welfare, terrestrial and marine ecosystems or water quality. In this respect, the publication of this information let a group of journalists create a visualization of the areas with the best and worst water quality in the country which generated an action plan by local governments. Thus, Colombia continues to work in the openness of the data, not only to achieve the goals of sustainable development, but to empower citizens and improve the quality and access to health.

Finally, Ben Meghreblian, from Open Knowledge International, dedicated his speech to explain the Open Trials project, an open database on clinical trials. According to the comments of Dr. Meghreblian, today most of this information is published in different sources and it cannot be accessed from a single point. Under this framework, an initiative that collects documents, researches, academic publications or the documentation associated with the clinical trial was born. Trials Open system combines all of these data with additional information received from researchers and the public on a platform which has more than 300,000 international datasets on clinical trials.

Among the possible re-users of data Open Trials are doctors, scientists, patients, journalists, regulators and developers who have an API that provides access to all data for the development of innovative solutions and services as well as a search engine which let find the information according to different criteria: location, organization, intervention ... In addition, all data provided by this platform are in open format for their reuse.

This panel of the International Open Data Conference has explored the barriers and challenges tha the health sector has to face today, such as the privacy of patient data or the immaturity of health systems in relation to open data. In addition, the event also provided an opportunity to know, thanks to the representatives of these entities, some public policies in the field of openness of health information and projects that show the potential of these data for the whole society.