Changing How Healthcare is Paid For
Making IDD Visible
A multi-year project harnessing the transformation capabilities of artificial intelligence (AI) to support people with intellectual and/or developmental disabilities (IDD) through better identification in healthcare data, which will address financial and clinical disparities and build a more supportive and effective healthcare system.
Changing How Healthcare Data is Used to Pay for the Right Services
IEC knows that better data is a critical first step to improving lives for people with IDD; as a result, we have developed a project called e-IDD. By harnessing the transformative capabilities of AI, e-IDD will analyze clinical and billing data to unlock accurate knowledge about the IDD population, helping patients to access public benefits and critical support services, decreasing the financial impacts of medical debt and helping them to achieve greater financial health. e-IDD will also help to prevent bad clinical decisions that can keep people with IDD from thriving.
We will build e-IDD using data on thousands of patients and leveraging lived expertise of people with IDD, family members, clinicians, data scientists, and data ethicists. Accessible by clinicians, payers, government, researchers, and other organizations that adhere to rules for appropriate, safe, ethical, and respectful applications, the tool will empower people with IDD, support more respectful conversations between clinicians and patients, and help reduce financial strains for people with IDD and their families.
- 1 in 20 Americans have IDD
- 10x: how much people with IDD are undercounted in insurance claims and electronic medical records
- $36,275: the dollar value of Home and Community-Based Services (HCBS) per person
- $350 billion: annual cost of care spent on the wrong services that don’t improve people’s health
Why This Matters
You can’t serve someone who is invisible to you. Currently, many people with IDD are inadequately identified in standard healthcare data. Surveys and CDC data suggest that the true prevalence of IDD could be around 20 times higher than what insurance claims and electronic medical records currently show (30-50 people per 1,000 with IDD versus one to three people per 1,000).
These data gaps have far-reaching impacts: denying people with IDD the resources they need to thrive, further driving patients and families with affected members into medical debt, leading clinicians and insurers to make decisions that can lead to harm, and limiting the amount of awareness and urgency around the population. Reasons for these data gaps include: doctors not checking for or diagnosing IDD enough because few of them are trained to do so, people with IDD not mentioning their diagnosis because of real and perceived negative consequences, and medical records not traveling with a patient, especially as they become adults.
People with IDD deserve to be seen, heard, and supported. Making IDD Visible will accelerate efforts to address disparities in access, financial support, and quality of care that people with IDD face. It will enable better measurement of health outcomes that matter to people with IDD and create a true understanding of how healthcare is utilized.
By effectively targeting services and identifying trends in spending, e-IDD will pave the way for critical investments in high-quality, empathetic care that meets the needs of people with IDD.
Making IDD Visible Highlights
2022
Created a main team including Duke University, Montefiore Medical Center, Intel, Nationwide Children’s Medical Center, and Jefferson Health.
2023
Added an advisor and people with IDD to our main team.
Finished making a detailed list of ICD-10 codes. ICD-10 is a system used by doctors to classify diseases. The codes we listed define the IDD population. We made this list by working together with:
--People who have personal experience with autism and intellectual disabilities
--Doctors who have experience treating children and/or adults with autism and intellectual disabilities
We also did some early analyses using electronic health record data.
Phase 2 (TBD)
Finished analyzing private insurance claims data with Milliman, a healthcare data company and created a plan to:
--Describe how people with IDD might show up in the data
--Find possible sources of bias in the data
--Deal with ethical concerns about how e-IDD should be created and used
Making IDD Visible Partners
The Making IDD Visible team includes people with IDD, their care partners, doctors, and other healthcare leaders. This diverse group works together based on listening to the real-life experiences of people with IDD and healthcare professionals. They use these perspectives to create practical solutions to improve healthcare.
Click on each to expand
Project Lead
- Mai Pham, President and CEO, IEC
Partners
- Duke University
- Epic
- Jefferson Health
- Montefiore Medical Center
- Nationwide Children’s Hospital
- Self-Advocates
Team on Insurance Claims Analysis
- Harsha Mirchandani
- Pamela Pelizzari
- Ian Moura
- Jennifer Kucera
- Gary Maslow
- Michelle Franklin
Making Healthcare Better and Safer for People with IDD
IEC works with people who have personal experience living with IDD and healthcare professionals. Together, they create new programs focused on patients' needs to change how healthcare is taught, provided, and paid for.