Enjoy everything you need to securely collect, validate, transform, and interact with data to measure and improve processes and outcomes. Leverage powerful administrator tools and access training resources and onboarding tools to ensure your entire team and membership are aligned. But know you will not be alone—clinical, analytic, and business experts will be in lockstep to provide strategic support. With ease, you can run the day-to-day with flexible, consistent, control over your success.

• Measurably improve clinical outcomes.
• Publish research in leading medical journals.
• Grow member participation.

It is not always a straightforward path for researchers.

Questions are complicated.

Priorities shift.

Real-world data is messy.

 

Simplify these complexities with modern analytics and science that create an efficient, reliable way to glean real-world evidence (RWE) from rich sources of disparate data that helps you accelerate discovery, advance patient care, and develop novel treatments.

Many different study designs are leveraged to support clinical research. Make sure the data you include is not limited. Registry data allows you to:

• Capture massive amounts of data from disparate sources and easily aggregate and enrich to provide a holistic lens
• Deploy advanced, scientifically grounded analytics to produce trusted research-grade evidence
• Interact at a deep clinical level with your data to create patient cohorts, analyze granular clinical details, and draw correlations within and across health conditions
• Track patient safety and inform clinical trial/study design
• Understand subpopulations including those affected by health disparities and heterogeneity of treatment effects
• Ensure alignment with Value/Outcomes Based Contracts that is dependent on accessing trusted RWD
• Employ registry technology to support post-market surveillance:
  • Access data from an existing registry
  • Partner with an existing registry
  • Create a new registry and consider combining one of the options above

A unique ‘treasure’ and resource in the worldwide scientific and medical environment.

Once you have your traditional research initiatives fueled, empower patients and extend your research breadth. Collect data from patients, their parents, siblings, partners, and caregivers to transform the full continuum of care. Allow patients to:

• View their own information
• Compare their information to de-identified, aggregate data from others with the same diagnosis
• Access specialized resources and education

Post-market surveillance

Demonstrate the real-world safety and effectiveness of medical devices and pharmaceuticals through your registry data—a vast data resource that provides real-time, ongoing data collection. It is a central source of truth to understand impact and iterate.

Clinical effectiveness: Use data from real-world clinical settings to examine the relative effectiveness of a device or drug in a large, diverse patient group and compare that product to the standard of care or alternatives.

Adverse events and side effects: Leverage real-world evidence to identify risks or adverse reactions that might have been missed in the initial clinical trial for a device or drug.

Utilization: Examine how a product is actually used in the real world, which can be different than what it is approved for or marketed as.

Not sure where to start? As partners, we help design which data types and sources are prepared for analysis—efficiently and securely acquired, combed, blended, and validated. For example:

• Clinical data—electronic health records (EHRs), case report forms (eCRFs)
• Patient-generated data—health and treatment history, biometric data, patient-reported outcome (PRO) surveys
• Cost and utilization data—claims data sets, biometric data, public databases such as CMS and AHRA
• Public health data—government data sources, national networks and centers

Data can be further enhanced with risk and reliability adjustments. For example:

• Control for the severity of a patient’s illness to level the playing field and ensure comparisons are fair and accurate.
• Account for sample size through the isolation of signals and reduce noise in your dataset to ensure observed rates or rare outcomes due to chance are accounted for.

Read more here.

Patient-cohorts

Further your research through analytic tools that facilitate activities like clinical trial enrollment and registry cohort comparison. Identifying individual patients who match a specific cohort of interest and meet clinical trial inclusion and exclusion criteria allows trial sponsors to expand their trial network beyond standard academic centers and into community care settings—all through rapid enrollment of trial participants. Creating comparison cohorts of registry patients through propensity-score matching allows trial sponsors to conduct fair and accurate comparisons between treatment cohorts within a trial external to the registry and non-treatment patients found within the registry.

Tools that quickly drive value:

• Filter by demographic
• Cut data by clinical variables
• Drill down to the patient level
• Choose by a specific subset of patients to facilitate abstractors

Read more here.

Patient-reported outcomes (PRO)

Collect, organize, and analyze patient-sourced data easily through a digitally delivered and optimized experience whether it be at the clinic, office setting, or on a patient’s personal device.

To succeed you must follow the edict of the “4 U’s”—not only for the benefit of the insights you need but to ensure the experience you put in front of patients will be positive. Surveys need to be useful, usable, used, and understood. The journey to design powerful surveys, analyze the data that they provide, and then share the data to change healthcare delivery is worth taking. We are here to help.

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The Centers for Medicare and Medicaid Services (CMS) made it clear at the 2021 CMS Quality Conference—technologically advanced, safe, and equitable healthcare system for all is the vision while concentrating on patient empowerment and innovative use of data to drive results. The focus is on propelling the healthcare system into becoming a “health-creating” system. This involves revolutionizing the timeliness of performance data, reduction of health inequities, and a focus on meaningful, forward-thinking measurement.

Registry data is uniquely positioned to support DEI initiatives across patient diseases and populations to improve outcomes and reduce variation in care.

Understand:

• Variations in disease treatment and outcomes
• Variations in care delivery, quality of care, and care effectiveness
• Safety signals and opportunities for enhanced surveillance
• Factors that influence disease prognosis and associated quality of life for patients

Then, take it a step further. Identify opportunities to enrich data further—patient-reported outcomes (PRO) or public health data as two examples—and find concrete ways to:

• Improve geographic and demographic diversity
• Access hard-to-reach patients
• Enhance public policy decision making
• Create opportunities for better health outcomes

If DEI should be part of your program initiatives, let’s sit down, design your data needs, and how our flexible technology software platform can drive your success.

Read more here.