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: the order of magnitude by which 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
Established a committed core team including Duke University, Montefiore Medical Center, Intel, Nationwide Children’s Medical Center, and Jefferson Health.
2023
Added advisor and IDD self-advocates to core team. Completed detailed code list for International Classification of Diseases, 10th edition (ICD-10), defining the IDD population in collaboration with people with lived experience of autism and intellectual disabilities and clinicians experienced in working with autistic children and/or adults and those with intellectual disabilities. Conducted preliminary analyses in electronic health record data.
Phase 2 (TBD)
Completed a claims analysis in private insurance claims data with Milliman. Designed an approach to create descriptions of how people with IDD may appear in data, identify sources of possible data bias, and address ethical issues in how e-IDD should be built and used.
Making IDD Visible Partners
Making IDD Visible is a diverse coalition that includes people with IDD, clinicians, researchers, and other healthcare leaders. The project group operates collaboratively, based on the principles of Authentic Community Engagement – learning from the lived experience of people from IDD and the perspectives of healthcare professionals to create commonsense solutions.
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 partners with people with lived experience of IDD and healthcare professionals to change the way care is taught, delivered, and paid for by creating new programs that center patients.