Overcoming the data dilemma in healthcare: The path to digital evolution

Yossi Cohen, physician executive at InterSystems, writes for MTI about the challenges of integrating and effectively using data as NHS Trusts work to digitally transform their operations.

In today's rapidly evolving healthcare environment, integrating and leveraging data is a critical challenge. Integrated Care Systems and NHS Trusts are making great progress as they digitally transform their operations and integrate new digital technologies to enhance patient care. The UK digital health market is estimated to reach approximately £3.85 billion in revenue this year and is forecast to reach £5.166 billion by 2028, a compound annual growth rate of 7.61% over the next two years, reflecting InterSystems' broad involvement in the industry and the number of participating suppliers.

However, many healthcare districts and providers are still burdened with outdated systems, siloed departments, and a lack of interoperability that results in disjointed, non-standardized, and duplicated data. This hinders the process of bringing data together in a single Shared Care Record (SCR) and easily leveraging it to support accurate decision-making in real time. This fragmentation also makes it difficult to derive value from data, reducing the efficiency of healthcare services and impacting the quality of patient care.

Data quality challenges play a key role in integrating data from different sources into one comprehensive SCR. Often similar but not identical data sets exist in different sources and when collected into one record, it is not uncommon for inconsistencies and duplications to occur. While most healthcare IT projects aim to create detailed and complete specifications at the start, the exact nature and quality of the data that will be obtained from the various data sources is often unknown. This makes it difficult to create a complete specification at the start.

Furthermore, different data types may require different processing methods when integrated into a meaningful and clinically safe SCR. Some clinical data types, such as allergy information, are more clinically sensitive than others when it comes to removing inconsistencies and duplicates and are often concatenated as is unless fully structured. Some other data types present more complex issues where different content of the same data type requires different considerations. For example, in the case of past medical history, type 2 diabetes from multiple sources can be integrated into one diabetes diagnosis, but multiple instances of myocardial infarction may mean that the patient has had one or more myocardial infarctions in the past, which is a clinically significant observation and therefore cannot be easily integrated into one entry.

Due to the wide variety of clinical systems on the market, there is often little or only partial overlap between the clinical systems used in one healthcare region and those used in another. This means that while the nature of the challenges healthcare regions face with regards to data may be the same, the implementation of the solutions used to address these challenges may differ. Even when the same clinical system is used in different regions, the actual usage and user data collected often differ depending on the nature of the users, the regional governance, and the organizational culture.

Overcoming Data Challenges

Addressing these challenges requires a clinically managed approach. It may seem like a cliché to assert that health IT projects are not technology projects but transformation projects that should be clinically driven and managed, but it is very true. Technical interoperability between different systems is a key element, but this is only a prerequisite for addressing the clinical opportunities that such interoperability brings and for addressing the data challenges previously articulated.

Therefore, proper clinical leadership and governance are essential to the success of any health IT project. In health IT projects where interoperability plays a key role, such as shared care records, proper clinical leadership must include stakeholders from all facilities that will participate in the health data exchange. Stakeholders can include facilities that provide data, facilities that use data, or both. All stakeholders have a stake in the outcome of such projects, but often different parties have different and conflicting requirements for how the information is processed and presented, and consensus must be reached.

Additionally, adequate representation of clinical leadership is key to achieving a clinically safe user-facing solution. While interoperability brings opportunities to healthcare organizations, it also leads to clinical safety challenges. As mentioned above, data quality can be a safety consideration and must be carefully managed. Other factors, such as availability of data from systems that interoperate in real time, must also be considered. The more systems that participate in a data exchange, the greater the chance that a participating system will go down when queried and be unable to share the data it would normally share. Over time, frontline care providers develop an assumption that what they are seeing is a complete representation of a patient’s record and that missing data means the patient does not have a particular illness, diagnostic test, or prescription medication. However, this is not always the case and must be managed by both user training and appropriate user interfaces.

Another notable example of the role of clinical leadership and governance in safely achieving clinical benefits is managing the organizational change required to leverage interoperability. Interoperability is an enabler that can support new workflows, but without the corresponding organizational changes, these new workflows will not work or introduce new risks. For example, interoperability may be key to notifying a team of a clinically significant event, such as a patient with heart failure being hospitalized for the second time in four weeks after being recently admitted to a nearby hospital. This is a clinically significant notification, but it must be followed up on appropriately by the team involved. This team must recognize such notifications, have a clear interface for accepting notifications, have appropriate resources to address the notification, and ensure that the notification is followed up on appropriately. This level of organizational change is easy to implement in a single medical facility, but is harder to achieve when it involves different facilities collaborating in the care of a patient and relying on interoperability as a foundation.

The way forward

Naturally, the way forward will involve a shift in thinking from the needs of individual organizations to a broader view that considers patient care across organizations, including primary care, secondary care, and social care. This way forward will be incremental; in health economics, this change cannot be achieved overnight. Instead, there will be a natural process of expanding data sharing and interoperability over time to include more systems and organizations, while at the same time developing new workflows that take advantage of new capabilities.

As more data is shared, measuring the benefits over time will be important to drive continued investment in such efforts and prioritize future activities accordingly. Realizing benefits can be achieved at any level, from measuring whether shared data is being used by frontline care providers to measuring patient outcomes such as readmissions, medication compliance, morbidity and mortality.

Benefits realization must always be compared to a baseline, and the best baseline is performance before any changes were introduced. Healthcare IT projects often start off with a bang, with significant effort expended on implementing key components of the solution, while little attention is paid to benchmarking future outcomes. When periodically reviewing projects of such complex nature to assess success and delivery of required benefits, having a baseline to compare to can be of great benefit.

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