Blog Post

How NWIS overcame technical and cultural barriers to data sharing during Covid-19

By Mackenzie Rech

December 29, 2020

    Covid-19 has shined a light on health care's place as a technology laggard. From telehealth to interoperability, many organizations were forced to make years of progress in months. For NHS Wales Informatics Service (NWIS), this meant collecting, sharing, and centralizing data that was previously trapped in silos.

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    NWIS is responsible for the central collection of health information for Wales. The organization obtains, manages, and analyzes data for trusts, health boards, and government agencies. At the start of the pandemic, the organization realized it would be called on to monitor the outbreak at a national level and provide data for decision-making.

    Although NWIS didn't have the tools and processes in place to aggregate data for a national snapshot, it quickly came up with a roadmap to respond to the crisis. The technical solutions it deployed were relatively rudimentary, but it overcame significant cultural and technical barriers to data sharing across Wales. These shifts laid the groundwork for future advancements in interoperability. We spoke with Rebecca Cook, NWIS' Head of Information Design and Standards Development, and Darren Lloyd, NWIS' Head of Information Governance, to learn more about the organization's progress.

    3 actions NWIS took to enable swift, data-driven decision-making across Wales

    NWIS used the urgency of the pandemic to make rapid improvements to the way it shares data. It took three immediate steps to centralize data for decision-making.

    1. Identified and resolved data gaps

    NWIS started by evaluating its current state to understand what required data was missing. There were two common types of data challenges.

    For certain data points, the organization had the data, but it wasn't timely. For example, NWIS already had robust referral, ED, inpatient, and outpatient activity data in its systems, but this data was submitted once a month for activity from the previous month. NWIS worked with its partners to more frequently refresh data so it could be used to inform daily decisions.

    The second issue was that some data points did not exist anywhere in NWIS' systems, including certain public health metrics used by officials to make lockdown decisions. It also needed testing data, but it didn't have the pipelines in place to receive data from labs. NWIS set up processes to acquire new data streams, ranging from real-time SQL queries to inputting numbers in a spreadsheet. For some data streams, tedious manual processes were the only immediate solution because the data was never previously collected in a digital format for analysis.

    2. Built dashboards to help users understand data

    Once the organization had the data in place, it needed a way to help end users sift through vast datasets and pull out the information relevant to their work. It layered a new business intelligence product over its data store which NWIS called the "data hub." The data hub creates aggregate reports and dashboards with trending data so NWIS didn't have to respond to the same common questions. The hub is also a self-service tool with an extract functionality so individuals can create customized reports.

    3. Managed stakeholder access to safeguard patient privacy

    The creation of the data hub was critical to extending data access across Wales, but this new access created complex compliance and privacy challenges. NWIS needed to understand both the United Kingdom's and European Union's privacy regulations and the unique requirements of all stakeholders, including the health boards, public health, and the government. For example, the health boards and public health agencies needed certain datasets returned to them in an identifiable format for care provision purposes.

    Built into the data hub are nuanced security controls that vary access for different partners. But despite these rules, the control stops if the data is downloaded. NWIS is not liable for how data is used if it's extrapolated from the system using the defined access controls, but the organization makes sure those with access privileges are aware of their responsibilities for keeping patient information safe and secure.

    The lasting impact of Covid-19: Data sharing elevated to a strategic priority at all levels

    The data hub enabled groups across Wales to make rapid, data-driven decisions during the crisis, but it also led to a resounding cultural change around data sharing. There is now universal agreement on the strategic importance of having a centralized national data store, from the trusts to the government.

    Trusts have historically been constrained in terms of what data they could share with NWIS. They were apprehensive about how the data might be shared publicly or used to assess performance or allocate funds. NWIS overcame this barrier by being very transparent about how the data was being used during the pandemic: to deliver better care and improve patient outcomes.

    The trusts now understand that they are aligned under a shared purpose, and NWIS is focused on upholding their confidence. "We are focused on maintaining that relationship, so they know the data is still very much sourced from them and we aren't trying to take advantage of the situation. We are doing this for the collective good, not an isolated purpose," Cook said.

    At the central government level, there was a realization about how important an organization such as NWIS is to the advancement of health care. For many years, the organization has dealt with challenges to its legal basis for existence, but it will now have a more clearly defined purpose under Welsh law starting in April 2021.

    What's next for NWIS: Looking toward the next generation of interoperability solutions

    NWIS is hoping to use this new statutory responsibility to advance its strategy and implement more advanced interoperability solutions. The organization made significant strides during Covid-19, moving from using flat .csv files to real-time SQL data pipelines, but it recognizes that it has a long way to go to develop more sustainable data-sharing processes.

    "We don't have very modern interoperability. We aren't using APIs—we are using SQL servers that talk to each other. If that chain breaks, the whole thing breaks down. We need robustness in our infrastructure to increase it and stretch it. We need to go from a straw to a metal pipe," Cook added.

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