GETTING WHAT DATA FROM WHERE TO THERE—WHY IS IT SO CHALLENGING IN HEALTHCARE?
We asked healthcare IT and informaticists three simple questions. Here’s what we learned.
In April, Dr. Phillip Payne, Phd, FACMI, one of Signet Accel’s founders, presented a webinar to health IT and informatics experts: A Systems Level Approach to Bio Medical Informatics and Data Science: How Interoperability Powers Precision Medicine and Value Based Care. Hundreds of HIT professionals registered and we had an opportunity to ask these healthcare technologists and data scientists a few questions. We were not expecting these results, but we think the answers are illuminating. The following responses begin to explain the current state of data integration. Read on for a glimpse into the challenges and barriers faced by frontline professionals—working in both treatment and discovery—as they attempt to achieve the promise of purposefully using all of the information collected about, and from, patients.
At the core of Dr. Payne’s presentation was interoperability: a necessary milestone in the roadmap to making all data usable. Achieving interoperability is important if we are to enable the fluid use of data from disparate sources, power precision medicine and inform the clinician in the active treatment and care of patients. It is critical to accelerate discovery in the research setting, especially among those seeking cure and treatment of rare diseases. Already understanding the potential, we sought to more fully understand the challenge in achieving this data’s usefulness. We started with a simple question about the data sources themselves:
“What are the disparate data sources you wish you could integrate for your organization that you cannot today, understanding that if you could, it would improve research and patient care outcomes?”
Labs were next on the list, with 33% wanting more seamless exchanges between EMRs, labs and diagnostic systems, while 11% are looking beyond themselves to see the opportunity in integrating with partners. Surprising to us, only 7% mention genomic data—not what you would expect if you read or watch the popular press concerning this industry, or if you are working in a role focused on precision medicine. Why were so few of these professionals unable to see beyond the EMR?
Our next question may provide some insight:
“What do you find to be most problematic in preventing your organization from accomplishing this integration?”
While not an immaterial amount, we anticipated a greater number of respondents to cite the technology as most problematic. Recent presentations given at HIMSS, AMIA and other expert communities in this space would support our expectation—too many systems, disparate data structures, security issues, etc., preventing data from coming together in a usable way. However, this was not the primary concern for two thirds of respondents.
Next, we thought money or time would present substantial challenges to achieving data integration and yet each only seems true for approximately one quarter of respondents: 27% indicate there isn’t enough budget to tackle the issue and 25% indicate they have too many other priorities and not enough resources to get integration done. Though obviously still presenting challenges, money and time affect fewer than we expected. To be fair, we anticipated some overlap. No one problem can account for all challenges. Interestingly, the most dominant issue cited by these professionals was an internal one: 42% said organizational constraints are the biggest barrier to achieving integration, requiring too many people to agree and collaborate.
It is true that both the treatment of disease and the achievement of improved wellness and wellbeing requires an ever-growing number of collaborators and there is not always a clear or agreed-upon path for innovation. We believe a federated technology approach can help well-meaning collaborators find an answer—not only a federated approach to data collection, storage and sharing, but also a federated means to manage, govern and collaborate among organizations, physicians and investigators. If time, technology and money aren’t an issue, then surely we can come together to change and achieve a culture more conducive to discovery.
If discovery is our goal, including better patient treatment and finding cures, then getting the data to the tools of analysis in a usable way is an important step to think through as well. The cost of data collection and storage is all for naught if it is not usable in analysis. At Signet Accel, we are in the business of integrating data to enable discovery. So naturally, we were curious to know the types of tools these professionals were using to flow vast amounts of disparate data through and conduct purposeful research. We share the belief that these tools, accompanied by large amounts of usable data, offer the opportunity to recognize previously unattainable patterns and predict outcomes in a way that translate to both the bench and the bedside. Our next question looks at data analysis tools :
“What are the software programs that you and/or other researchers at your organization use to analyze data for research?”
But, we must admit, Microsoft Excel’s accessibility and easy use make the result unsurprising. Though Excel continues to get more and more robust and add-ons make it more useful than ever, it cannot begin to efficiently crunch the volume of data on the horizon in a manner that will deliver discovery in this emerging era of big data in healthcare. What is holding us back from the next big (and little) discovery? We are left with more questions.
Again, talk of genomic data is everywhere. But why is it not more important to these respondents? Why aren’t they using more sophisticated tools and why aren’t they looking to partner in sharing data? Admittedly, this tiny survey is not statistically significant. But the responses are far from insignificant. We were able to talk to qualified experts in our field with a pre-existing interest in precision medicine and data integration. And the results ring remarkably true.
Our institutions of care and research are not set up for free-flowing collaboration. They are highly competitive and, just like in other industries, data can be a key differentiator. Yet collaboration is possible—despite competition—when objectives are clear and ownership and governance are respected without risk of jeopardizing or forfeiting value. There is an opportunity to enjoy shared success, even in the most competitive of industries. We all recall collaboration between Microsoft and Apple to bring interoperability to the Microsoft Office suite of software. Collaboration and mutually positive outcomes can happen when goals are shared. And there’s no more mutually positive outcome than the discovery of better treatments and cures for disease.
While it’s easily said, we concede that it’s not easily achieved in healthcare. Current means of sharing data often require the centralization of data. And once centralized, much is compromised. Ownership and governance among contributors are difficult to retain. The cost to maintain and update data can be cumbersome and prohibitive. The risk that one party may benefit asymmetrically to another is also a possibility, and the need to agree to a single standard may require one or more organizations to restructure older data and rework current workflows for data collection going forward. Each of these compromises have huge associated costs in both time and money for a workforce that should be focused on the patient—not on learning new system taxonomies.
In addition, patients have a very real right to privacy and trust that their information will be kept safe and secure. For those who take the steps to consent, they expect their data will be used to further understanding and research and leveraged in the most powerful way possible—to not only impact their health and wellbeing, but also that of their loved ones and perfect strangers alike. At Signet Accel, we believe the work of data integration is about far more than code.
We introduced the Avec® platform to overcome technical problems, but even more importantly, we introduced it to ensure that technology is never a barrier to collaboration, no matter the complexity of relationships and agreements. If institutions, or groups of institutions, are ready to collaborate we want to ensure that they have all data possible, ready for the task ahead. The Avec® federated approach to data integration means our clients’ data stays as it is and where it is. It does not require changes to data collection workflows already in place and it allows for administered and secured access, as well as collaboration among established partners.
Are you looking for answers beyond the limitations of Microsoft Excel? Are you seeking to integrate more of your data for use in powerful predictive tools? Are you frustrated by attempts to implement your collaborative agreements? We are here to help. We believe in big possibilities—and the potential for shared outcomes are simply too great to ignore. Let us introduce you to Avec®.
We look forward to your questions.
Brenda Berry, EVP Sales and Marketing