Collaboration Creates Better Interoperability for Health Data Sharing

Interoperability has been on the minds of healthcare leaders for over the past decade, and while strides have been made in sharing health data, there are still many hurdles to overcome.

“Interoperability is essentially like water. It creates a pathway for data to flow and for that data to turn into information. Then it is used for its intended purpose, to be beneficial for the end-user and the sender,” said HIMSS senior director of informatics, Mari Greenberger.

The problem, however, is the technology and disparate systems between and amongst organizations, such as large integrated delivery networks versus community health centers.

“Depending on the clinical setting, some of these organizations operate in completely different orbits, and the proper tools are not yet in place. Many still struggle to have their data digitized,” Greenberger said.

According to Jan E. Larsson, a senior advisor at Cambio and a HIMSS Clinical and Business Intelligence Community member, interoperability of clinical information comes down to patient safety and efficacy.

“From a patient and relative perspective, it’s a given that systems can interoperate, and the flow of relevant information can be granted inside health systems, between health systems, between regions and also countries and nations,” Larsson said. “There will always be a question of trust involved and information security has to be balanced and amplified to match the ever-increasing demands of interoperable clinical patient information.”

Though the pandemic pushed many organizations over the hurdles to providing healthcare digitally, there is much work to be done to align systems and build partnerships to share health data.

Progress During the Pandemic

COVID-19 had a huge impact on healthcare organizations and changed many aspects of  how they function.

“COVID-19 has laid bare many inequities in terms of access and delivery of care,” Greenberger said. “The use of telehealth has leveled the playing field to a certain degree.”

She noted that the pandemic has improved health data interoperability in the following ways:

• Through telehealth, a variety of patient access issues have improved, and more people are able to participate in clinical trials because they don’t have to travel, thus opening up research possibilities to a wider group of participants.
• Older people have begun to embrace technology and have gotten online and learned how to use it during the pandemic.
• Community-based organizations (CBOs) have made improvements to their technology and how they’re supporting their users for these critical services.
• New healthcare entrants have begun to come forward to address the ongoing challenges around social determinants of health and interoperability because as the needs of social care services increase, so does the need to share information between partnering organizations across the healthcare ecosystem.

“The opportunity for the healthcare industry to build new digital infrastructure is huge and it's global,” Larsson said.

Building Bridges Between Stakeholders

Moving forward with interoperability for health data for both clinical and social care settings, Greenberger said she hopes to see more knowledge sharing between entities.

“Understanding that when one region of the world is really strong, and one that is not as strong, we are building bridges and sharing information,” Greenberger said. “We’re trying to pinpoint that evidence-based practice in how we create these bridges worldwide.”

Another step that needs to be taken is the creation and adoption of open data standards on health informatics and messaging. 

“I also would like to add the opportunity of standardizing the storage of clinical data (open/EHR) is a very promising initiative where the data is independent of the applications,” Larsson said. “IHE is doing great work, but also the development of open systems has to be supported by nations and health systems internationally (WHO, UN).

He added the industry must be able to meet the demands for open health data/systems.

“At the same time, we need collaboration on cybersecurity. The trust issue can never be neglected,” Larsson said.

Challenges to Progress

Larsson noted four main areas bringing challenges that keep the global health and care community from achieving full interoperability. These include:

1. Legal
2. Organizational
3. Semantic
4. Technology

“Today all these four areas are developing to create value for patients, health systems, payers and the industry. It’s a win-win race if it's governed right,” Larsson said. “The legal level is the one that needs the most support for the time being, as I see it. Technology is there but maturity and business models are not ready to really support the patient.”

Greenberger added that entities operating in data silos need to be more collaborative.

“Data can be viewed as currency, so getting a high volume of patients, including their data, within their systems is critical,” she said. “Simply put in today’s healthcare landscape, becoming truly interoperable is completely at odds with how entities are incentivized to make money, but it’s best for the patient, the community, and the healthcare industry.”

Another challenge to interoperability for health data is the diversification of stakeholders using different types of technology and organizational structures, as well as operating under varying sets of rules and regulations.

“We essentially have a jigsaw puzzle for how health data is exchanged, accessed and used across the global health ecosystem – and oftentimes there are misaligned policies and laws keeping us from moving forward,” Greenberger said.

However, she noted that several new market suppliers are gaining momentum to address this need, bringing lagging healthcare entities up to speed in their technological capabilities.

Finding Support

When it comes to building support for sharing health data, all stakeholders need to come to the table and be willing to participate.

“Coalition building is essential to how progress is made. There is a unique power to convening a diverse group of stakeholders to discuss major pain points still occurring in the market and turning that into a roadmap with actionable outcomes garnering attention and building progress,” Greenberger said.

She said the coalitions should meet in a neutral space with low barriers for entry into participation, and provide an environment where partners can share their key issues and understand the needs.

“They can convene around certain topics and bring a unified perspective to policymakers about what is needed. They have a more powerful voice if they approach it together,” Greenberger said. “It’s really about building bridges, and building relationships—we’re doing this for good, it’s not about the bottom line.”

But to build those interoperability bridges and find a consensus for standards, healthcare industry leaders must encourage collaboration between health partners.

“My experience is that leadership is the key to establishing and executing use cases that really show the value of interoperability. Followers will come with the right incentives,” Larsson said.

Success Stories

Though there have been challenges to implementing interoperability, there have also been some successes in sharing health data.

Larsson pointed out several wins for interoperability in the European region, including:

• The European Patient Smart Open Services, which developed and evaluated cross-border healthcare in the European Union, with 25 countries participating
• The Nordic Interoperability Project, which has a focus on creating an integrated, sustainable health system through interoperability in the Nordic region
• Finland’s legislation on secondary use of clinical information

“I would also like the mention the rise of AI projects to really support efficient clinical decision support and enhancing and modernizing old legacy systems like the EHR,” Larsson said.

Greenberger added that she is encouraged by the conversations that are happening around interoperability.

“The amount of cross-talk within the healthcare ecosystem, seeing entities talking to each other, disrupting and being innovative in care and social approach is incredible to watch and gives me tremendous hope for the future,” Greenberger said. “It’s not an overnight thing. It’s so entrenched with hundreds of years of misaligned policy, but the industry, in partnership with the public sector, are moving forward and they are addressing it.”