Open data in healthcare

Open data is basically data that is accessible to the entire public and can be used, reused, shared and redistributed without restrictions from patents, copyrights and other mechanisms of control as long as it does not contravene national security or privacy concerns. Open data is likely to be crucial in transforming certain sectors and reducing costs but, paradoxically, the growth of open data is paralleled by the rise in intellectual property rights.

One of the sectors that open data can prove revolutionary is healthcare. Healthcare systems across the globe are becoming increasingly digitized. The growth in health data is unprecedented. Healthcare practitioners can benefit from open data enabling them to optimize care and facilitate preventive medicine.  If healthcare could evolve into a learning system both patients and medical institutions could benefit from the large volume of data, so will care delivery. The benefits of sharing health data are enormous. This has impelled several stakeholders from governments, universities, technology companies and non-governmental organizations to come together and seek ways to develop new regulations and guidelines that will promote open data in healthcare.

Providing full access to health data is a thorny issue due to the complexities in doing so. One of the trickiest issues is privacy concerns. Information about individuals is critical and protecting it is paramount. The implications of exposure are unthinkable. Patient information falling in the wrong hands can lead to embarrassment and discrimination. Also, companies that collect health data such as those that process insurance claims would prefer to sell such information to interested parties. Commercialization of data is another obstacle to open data in healthcare. Lack of financial incentive makes these organizations reluctant to collecting data at all.

Researchers conducting clinical trials or evaluations might also be reluctant to share information. Collaborations are vital in research but in this case, competition might lead to hidden motives and distrust. Teams might try to outperform one another in order to be the first to publish the results. Such cynicism discourages institutions from sharing data. Conflict of interest is regrettably common in both private and public health research.

Open data is likely to be critical in helping healthcare systems around the world in transforming themselves in order to effectively tackle key challenges in the future. The need for rapid data sharing in emergency situations is critical. Such data will go a long way in mitigating the effects of disease outbreaks. At the moment open data in the health sector is limited and until individual health data can be 100% anonymized, the likelihood is that the impact it can have will be limited to infrastructural change rather than true health implications. The benefits of using open data in healthcare are clear. However, open data on its own does not lead to healthcare innovation. There is need for collaborations and partnerships that will effectively utilize the large amounts of data that will be accessible.

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