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Imagine a mother who begins to forget the small things—where she placed her keys or a familiar recipe she’s made for years. Her family might brush it off as normal aging, but these early signs could be the onset of Alzheimer’s Disease, a type of dementia.
For the millions of people like her and their families, the stakes couldn’t be higher. Currently, 1 in 9 people aged 65 or older has Alzheimer's Disease, and this number is expected to grow rapidly as the nation’s population ages. Without effective therapies, the prevalence is set to triple over the next few decades, with an estimated 12.7 million Americans living with Alzheimer's Disease dementia by 2050. In 2022, healthcare costs associated with Alzheimer's treatment reached $321 billion, and projections indicate costs will exceed $1 trillion by 2050.
Despite the urgent need, early detection for Alzheimer's Disease remains a complex challenge.
Data collection for Alzheimer's research and clinical trials faces significant obstacles, including difficulty in measuring relevant risk factors and outcomes. For instance, over half of adults aged 45 and older who experience subjective cognitive decline have not discussed their thinking or memory issues with a healthcare provider.
Underdiagnosis is particularly common in the early stages of dementia when symptoms are mild. Many physicians may lack the training or screening tools necessary for evaluation. Interoperability is also a challenge – with diagnostic tests frequently in PDF format, making it difficult to track the data in a patient’s electronic health record (EHR).
Additionally, health systems are often overwhelmed by the demand for Alzheimer's-related diagnoses and treatments, compounded by lack of structured and standardized processes for early detection, financial constraints and limited specialist availability. Premier data from July to December 2023 shows specialists with expertise in diagnosis and care of dementia, like neurologists and psychiatrists, are involved in less than 5 percent of dementia cases.
Further complicating matters, data sources with high-quality outcomes measures may not be large or diverse enough to support research on differences across subgroups and often fail to represent key populations such as caregivers, families, or racial and ethnic groups disproportionately affected by the disease. A new Center for Medicare and Medicaid Innovation (CMMI) Guide Model addresses some of these concerns with caregiver burden and assessment data reporting requirements, caregiver education classes and respite services, and a focus on health equity, including payment adjustments and a required health equity plan by model participants.
Alzheimer's clinical trials also tend to be slower to enroll participants, take longer to complete, and are more expensive than trials in most other therapeutic categories. In fact, 99 percent of eligible patients are never referred to or considered participating in an Alzheimer's Disease clinical trial.
Coding challenges, such as lack of information in the EHR and the inability to accurately identify underlying conditions causing dementia, contribute to the problem as well. Premier data reveals that nearly 80 percent of patients with Alzheimer's Disease or related conditions were coded with an “unspecified” diagnosis (July to December 2023).
Engaging healthcare providers and implementing early detection strategies could offer hope to countless patients and families.
Addressing Alzheimer's challenges requires a collaborative approach, where health systems and life sciences organizations come together to enhance care. Premier Applied Sciences’ (PAS) Brain Memory Collaborative (BMC) is one such initiative, uniting experts to tackle the clinical, operational and financial barriers to early Alzheimer's Disease identification, diagnosis and treatment. Here’s how:
1. Early Diagnosis and Care Management with Real-World Data
Leveraging real-world data (RWD) and real-world evidence (RWE) coupled with AI-powered technology, the PAS BMC enables rapid screening of diagnosed, undiagnosed and at-risk patients, identifying gaps and opportunities in Alzheimer's Disease care management.
The Premier® Healthcare Database (PHD) is considered a gold standard in RWD, encompassing over 20 years’ worth of chargemaster data, more than one billion individual patient encounters and 1,300 unique sites spanning the continuum of care. By uniting specialized data sources and clinical trial data through privacy-preserving record linkage technology, PAS and the BMC generate RWE that can be used to help assess long-term health outcomes, improve treatment safety and efficacy, and empower the healthcare industry to treat chronic conditions, including Alzheimer's Disease, more effectively.
This integration of RWD, machine learning (ML) and natural language processing (NLP) offers a data-driven understanding of disease progression and early intervention opportunities. For example, NLP can process more than two million records per hour, help identify trends and facilitate understanding unstructured information in clinicians’ free-text notes, pathology reports and genomic results.
In Alzheimer's Disease care, the team used NLP to mine 20 million documents, identifying over 600,000 patients with Alzheimer's Disease, dementia or mild cognitive impairment.
A risk model was developed based on commonalities found in the data, research conducted and discussions held with BMC experts and other professionals to help build a System Care Pathway to optimize care for Alzheimer's patients.
2. Optimizing Care Pathways
Optimizing care pathways is essential to improving Alzheimer's Disease treatment and care management. Life sciences organizations, through the BMC, are dedicated to enhancing care and outcomes for people living with Alzheimer's.
These organizations and a multidisciplinary panel of expert advisors participate in an Alzheimer's Disease Evidence Council, sharing insights on existing clinical pathways, barriers to effective care and innovative solutions.
Insights from this evidence council, driven by RWD and subject matter expertise, have informed the creation of the “Early Alzheimer's Disease Care Pathway – A Health System Readiness and Implementation Guide.” This guide provides a clear framework for end-to-end Alzheimer's Disease care management activities based on guidelines and real-world practice. It also addresses the utilization of new diagnostic, care management and treatment mechanisms, such as APOE testing, blood-based biomarkers (BBBM), digital tools and telemedicine.
3. Innovative Testing Technologies: Confirmatory Blood-Based Biomarkers (BBBM)
The role of emerging testing technologies, particularly confirmatory and triage blood-based biomarkers (BBBM), is rapidly evolving in Alzheimer's Disease care. While confirmatory BBBMs are still in early stages, they hold significant potential for transforming early diagnosis. However, challenges remain such as cost, health plan coverage and a lack of standardization on the exact tests used.
To overcome these barriers, Premier is leading an Implementation-Effectiveness Study, examining the barriers and facilitators to using these new BBBMs and describing the time to diagnosis when the BBBMs are used vs. current standard of care. A component of this study also includes a cost analysis to health systems using current standard of care diagnostic practices.
4. Enhancing Diagnosis and Coding Accuracy
Accurate diagnosis and coding are foundational to effective Alzheimer's Disease care. CodingGuide is a critical tool in this regard, offering clinical decision support (CDS) technology and real-time alerts integrated into the provider workflow.
For Alzheimer's care, where accurate diagnosis is critical, CodingGuide can help ensure that practitioners are coding for specific conditions rather than relying on "unspecified" diagnoses. By providing real-time revalidation of codes, CodingGuide supports better risk stratification, allowing healthcare providers to tailor care more effectively to each patient's needs.
CodingGuide can also play a crucial role in streamlining operations, reducing the administrative burden on healthcare providers, and minimizing disruptions in care delivery. This supports improved overall Alzheimer's patient care and outcomes.
Alzheimer's Disease presents a complex array of challenges, but the integration of RWD, AI-enabled technology, leading research and collaborative care pathways offers a promising path forward. By working together, health systems, life sciences companies and researchers can drive significant advancements in care, improving patient outcomes and transforming the future of Alzheimer’s treatment.
As we observe World Alzheimer’s Month this year, with the theme “Time to Act on Dementia, Time to Act on Alzheimer’s,” we echo this call to action. The PAS BMC remains committed to partnering with stakeholders to generate real-world insights and drive innovations that optimize Alzheimer's care.
The time to act is now. Together, we can make a meaningful impact in the fight against Alzheimer's Disease.
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