Healthcare Information Sharing Must Expand Beyond Its Hospital-Centric Focus

Almost ten years ago, the 21st Century Cures Act was enacted to facilitate the free flow of health data by promoting greater interoperability and standardizing electronic health information, reducing information blocking and barriers to sharing, and emphasizing patient access to their health information. It aimed to spur modernization in how data is shared between providers, patients, and payers. From this, the industry has been building systems to capture and exchange data on acute hospital care. Still, we have left most of healthcare’s daily realities behind, and that needs to change.  

Hospitals were a logical starting point, as they had the infrastructure, urgency, and political attention for a strong start. But now, we keep refining the same hospital-centered data-sharing playbook and hoping for better outcomes. However, at this time, the patients’ needs and costs are shifting, with the real action being in non-acute settings where chronic diseases are managed. These entities have remained digitally disconnected and technologically under-resourced.  

It’s like we built a highway system to every emergency room in the country but forgot to pave the roads that lead people home. 

Healthcare distribution has changed, but the framework hasn’t

Chronic diseases now account for 90 percent of U.S. healthcare expenditures, which total approximately $4.9 trillion annually. They are redefining modern healthcare, as we are an older and unhealthier nation than ever. The prevalence of adults in the US with at least one chronic condition increased from more than 72% in 2013 to 76% in 2023, and those with multiple chronic conditions (≥2) increased from more than 47% to 51%.

Most people with chronic diseases manage their multiple conditions across a multitude of settings, including primary care, specialist physicians, home health, skilled nursing facilities, pharmacies, behavioral health centers, durable medical equipment, inpatient rehabilitation, residential care communities, hospice, and community organizations such as food banks and transportation services. No surprise, Medicaid spending doubles for adults with one or two chronic conditions and nearly quadruples for those with three or more conditions.​The digital fragmentation and lack of transparency between these disparate parties know no bounds. 

Even the Centers for Medicare & Medicaid Services (CMS) is acknowledging the need for stable, recurrent reimbursement in this sphere, recently unveiling its new Advancing Chronic Care with Effective, Scalable Solutions (ACCESS) Model to expand access to new technology-supported care options that help people improve their health and prevent and manage chronic disease.

Between 40% and 50% of patient recovery, monitoring, and ongoing health interventions occur outside the hospital in post-acute or community-based care settings. The US post-acute care industry is valued at $482.97 billion in 2024 and is expected to grow to $786.71 billion by 2034. Post-acute care in the United States constitutes more than 40% of hospital discharges, yet it’s the most digitally disconnected in the care continuum. 

While post-acute facilities account for the bulk of care in America, from the smallest communities to the biggest cities, they are still largely invisible online. Post-acute often lacks the funding, technical capacity, staffing resources, and interfaces that hospitals take for granted. The result is a two-tiered system of data access: those inside the acute-care ecosystem and those that are not. Post-acute has been left with fax, phone, and sheer will to coordinate patient care. 

Government frameworks have not been adjusted to support this continuing shift, much less to address the lack of access to technologies post-acute care has compared to their hospital counterparts. The 21st Century Cures Act, the Centers for Medicare and Medicaid Services (CMS) interoperability rules, and information-blocking laws — with newly invigorated enforcement — are foundational but still fall short in this chronic-disease-ridden world. 

Rebalancing toward post-acute care

If every hospital achieved perfect interoperability, we would still be missing the majority of interactions that determine whether a patient improves or if costs are contained. Information sharing must extend beyond discharge. Notably, healthcare dollars are flowing toward chronic disease management, but blind spots in post-acute data exchange undermine our ability to manage care quality and costs. 

We must now stop trying to refine acute-care data exchange and start investing in the connective tissue. We should:

• Fund the unconnected amongst us by providing infrastructure grants to post-acute care providers, facilities, and community-based organizations so they can be a part of the digital ecosystem. 
• Expand enforcement focus to correct the unintentional isolation that has occurred around post-acute. The answer is building accountability into the legislative frameworks around inclusion of all post-acute entities, not just rules to avoid bad behavior.
• Reward connected outcomes by shifting incentives towards multi-setting coordination and longitudinal results, not just point-of-care compliance. 

Healthcare’s next leap in interoperability will not stem from additional rules for the already connected, like hospitals, payers, and large technology vendors. It will grow from prioritizing the post-acute ecosystem and giving them the digital access they deserve to better care for their patients. After all, within those entities is where people live, age, and manage their chronic conditions.

Photo: Supatman, Getty Images

Effie Carlson is the CEO of Watershed Health. She brings more than 16 years of experience in healthcare leadership, policy, strategy, and business development across the provider and payer sectors, and her experience spans managed care, healthcare technology, government relations, and value-based care. Carlson founded EJC Consulting Group and has served in executive leadership positions at Modivcare, PayrHealth, Team Select, and CareCentrix. Carlson is an active advisor and board member for healthcare organizations, including the Texas e-Health Alliance, SendaRide, and the Non-Emergency Medical Transportation Accreditation Commission (NEMTAC).

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