In today’s healthcare environment, the general consensus is that the exchange and flow of data is crucial and beneficial to developing better care of the patients. Healthcare information exchanges (HIEs), as an example, have shown to be effective in improving public health, reducing healthcare redundancies, and providing clinical providers with more support tools in their day-to-day work. As much as we have realized the importance of data sharing, many barriers still remain - namely legal, motivational, and technical.
Legal barriers to data sharing run the gamut from being too restrictive to being completely non-existent. While HIPAA is the overarching data governance strategy in the U.S., the interpretations of HIPAA and the level of comfort with de-identification under HIPAA still vary. For example, disparate agencies have disparate policies with differing levels of restriction. Some agencies have had experiences that were negative in the past, and that in turn influenced their views on data sharing and collaboration. Different interpretations of “ownership” of data versus “stewardship” of data also have proven to be a roadblock in data collaborations. To accelerate better healthcare outcomes with better data sharing, it is important that a clear, well-defined guideline is instituted from a source of truth, and data providers and data users continue to work to establish rapport.
Motivational barriers to data sharing include the lack of incentives, opportunity cost, potential fall-out from negative publicity, and lack of resources. The lack of resources and lack of incentives are closely linked. It is imperative to consider how data sharing can be incentivized in order to create more resources for institutions participating in data sharing. Once the incentives and resources are aligned, concerns regarding publicity can be alleviated by seeking community feedback and proactively soliciting the consent of patients. It would also be helpful to create educational messaging around data sharing, centered around how the sharing of medical data can actually lead to better outcomes for patients, reduce costs for institutions, and push forward the technology of healthcare.
Healthcare institutions are designed to keep data safe by creating secure silos. The underlying architecture beneath healthcare data is inherently adverse to data leaving individual silos, and technical teams within institutions are not built to run a data sharing framework. Useful data are often stored in different datalakes, such as PACS, EHR, RIS, etc, and not all formats are standardized. Curation, homogenization, and preparation of data to make it useful and generally applicable to any future-of-care development is intensive and time consuming.
To overcome the legal, motivational, and technical barriers, healthcare institutions should look to align incentives across the obstacles. How can resources created from data sharing such as additional revenue be used to further build out technical capabilities and ensure better de-identification of the data? How can soliciting community feedback help with ethical and legal considerations of data sharing? It is increasingly becoming clear that in order to increase the standard of healthcare for patients, data can no longer be siloed as a defensive measure, but should rather be used as a tool. There is no better time than now to explore the possibility of data as an asset and break down the silos as they currently exist.