As healthcare systems worldwide become increasingly digitized, medical scientists and health researchers have more data than ever. Yet much valuable health information remains locked in proprietary or hidden databases. A growing number of open data initiatives aim to change this, but it won’t be easy.
Privacy concerns are one of the thorniest obstacles. Even as the open data movement gains strength, many questions remain about how to protect information about individuals. Without proper controls, such information could enable discrimination, cause embarrassment, or be used for other undesired or abusive purposes.
Commercial realities present another major obstacle. Private healthcare companies, such as those that process insurance claims or implement hospital information systems, often prefer to sell data rather than share it. If they can’t monetize health data, some companies have little incentive to collect it at all.
Health researchers conducting clinical trials or policy evaluations might also hesitate before sharing data. While doing so can invite collaboration and faster validation of results, it can also empower competitors to make their own discoveries or publish results first. With patents, research grants, professorships, and other rewards at stake, competitive pressures can often discourage data sharing.
The hesitancy to share data can also persist after research is completed. If a study didn’t lead to meaningful findings, some researchers may see no value in publishing their work, even though such “negative results” can be useful to others. Sometimes, health researchers deliberately bury or obscure results—and the data behind them—when they don’t support desired treatments or policies. In both private and public health research, conflicts of interest are regrettably common.
In some countries, there’s simply not much data to share anyway. As Techonomy reported in July, such data gaps are particularly acute in emerging markets that lack IT-powered healthcare systems, active research communities, and strong institutional frameworks for public health data collection. Other countries have plenty of data, but don’t have tools and protocols for using it effectively and ethically.
To overcome these challenges, a growing array of stakeholders—including healthcare and tech companies, research institutions, NGOs, universities, governments, patient groups, and individuals—are banding together to develop new regulations and guidelines, and generally promote open data in healthcare.
Some of these initiatives focus on improving transparency in clinical trials. Among those pushing for researchers to share more clinical trials data are groups like AllTrials and the Yale Open Data Access (YODA) Project, donor organizations like the Gates Foundation, and biomedical journals like The BMJ. Private healthcare companies, including some that resisted data sharing in the past, are increasingly seeing value in open collaboration as well.
Other initiatives focus on empowering patients to share their own health data. Consumer genomics companies, personal health records providers, disease management apps, online patient communities and other healthcare services give patients greater access to personal health data than ever before. Some also allow consumers to share it with researchers, enroll in clinical trials, or find other ways to leverage it for the benefit of others.
Another group of initiatives seek to improve the quality and availability of public health data, such as that pertaining to epidemiological trends, health financing, and human behavior.
Governments often play a key role in collecting this kind of data, but some are more open and effective than others. “Open government is about more than a mere commitment to share data,” says Peter Speyer, Chief Data and Technology Officer at the Institute for Health Metrics and Evaluation (IHME), a health research center at the University of Washington. “It’s also about supporting a whole ecosystem for using these data and tapping into creativity and resources that are not available within any single organization.”
Open data may be particularly important in managing infectious disease outbreaks and other public health emergencies. Following the recent Ebola crisis, the World Health Organization issued a statement on the need for rapid data sharing in emergency situations. It laid out guidelines that could help save lives when the next pandemic strikes.
But on its own, open data does not lead to healthcare innovation. “Simply making large amounts of data accessible is good for transparency and trust,” says Craig Lipset, Head of Clinical Innovation at Pfizer, “but it does not inherently improve R&D or health research. We still need important collaborations and partnerships that make full use of these vast data stores.”
Many such collaborations and partnerships are already underway. They may help drive a new era of healthcare innovation.
Will Greene is a healthcare technologist and researcher based in Vietnam. You can find him on LinkedIn.