Patient Story: "Maria’s Journey:" A Composite Patient Example

Background: A Life Fragmented by Silos

Maria is a 39-year-old single mother living in a rural area. She has long struggled with type 2 diabetes, depression, and alcohol use disorder. After losing her job during the pandemic, her health deteriorated rapidly. She began skipping appointments with her primary care provider, had difficulty managing her insulin, and relapsed into drinking to cope with worsening depression.

Maria started seeing a local behavioral health provider who specializes in addiction treatment. The clinic operates under 42 CFR Part 2, a federal privacy regulation that prohibits the sharing of substance use treatment information without explicit patient consent, even with other providers in her care network. This created a major gap in her care.

The Challenge: Care in the Dark

Maria’s primary care provider was unaware of her recent relapse or participation in addiction treatment. Meanwhile, the behavioral health provider had no access to Maria’s full medical history, including her unstable blood sugar levels, recent ER visits for hypoglycemia, or her use of antidepressants prescribed by a different clinic. Each provider was treating only part of Maria’s story, leading to fragmented care.

The Turning Point: HIE with Electronic Consent

Things changed when the regional HIE implemented an electronic consent management system that supports granular consent for 42 CFR Part 2 data. During a visit to the behavioral health provider, Maria was offered a digital form where she could:

• Review which organizations participate in the HIE

• Select the types of data she wanted to share (e.g., substance use treatment, labs, prescriptions)

• Set a time duration for consent

• Specify which providers could access which types of records

With guidance, Maria agreed to share her Part 2 records with her primary care team, and vice versa. The consent was securely recorded and immediately applied through the HIE’s infrastructure.

The Result: Whole-Person, Coordinated Care

Suddenly, the picture became clearer for everyone involved:

• The primary care provider saw Maria’s enrollment in addiction counseling and coordinated to safely adjust her antidepressant dosage to avoid drug interactions.

• The addiction counselor learned about Maria’s diabetic complications and collaborated on a behavioral health plan that considered the stress of managing chronic illness.

• A care coordinator flagged Maria as high-risk and helped her enroll in a Medicaid care management program, offering transportation and nutrition support.

• Maria, for the first time, felt seen as a whole person—rather than “just” an addict, or “just” a diabetic patient.

With integrated care, Maria began to stabilize. Her A1C improved, she committed to sobriety with consistent support, and her mood lifted as she reengaged with her child’s school community.

Why It Matters

This story highlights several key benefits of HIE with electronic consent for 42 CFR Part 2 data:

• Patient Empowerment: Maria remained in control of what was shared and with whom.

• Improved Safety: Avoided medication conflicts due to siloed records.

• Care Coordination: Providers could build a shared plan across physical, behavioral, and substance use domains.

• Reduced Burden on Patients: Maria no longer had to manually relay medical information during each visit.

Regulatory & Technical Notes

• 42 CFR Part 2 permits electronic sharing of SUD treatment data if the patient consents, including via HIEs, as outlined by SAMHSA guidance.

• The 2024 final rule introduced single consent for TPO (treatment, payment, operations) and requires each disclosure to include the signed consent or a clear summary of its scope.

• Organizations implementing HIEs must ensure consent tracking systems support these requirements and can attach the consent documentation to each record disclosure.