By Alicia Cowley, MD, MBA, Internist & Medical Director of Phreesia Network Solutions
As a physician who has spent years practicing internal medicine and hospital medicine, I’ve seen how the transition from primary care to specialty care can make—or break—a patient’s health journey. One case that stays with me is a patient I treated in the hospital who was newly diagnosed with hyperthyroidism. We stabilized her, started guideline-directed therapy and discharged her with a plan to follow up with an endocrinologist within two weeks.
A couple of months later, she was back in the hospital—this time in the intensive care unit with a life-threatening complication of hyperthyroidism. She hadn’t seen the endocrinologist. The referral had been placed, but she wasn’t sure if it had gone through. She hadn’t received a call from the specialist’s office, and didn’t realize she needed to follow up herself. Meanwhile, she had stopped taking her thyroid medication, and her symptoms had rapidly worsened.
Although her second hospitalization was triggered by a rare complication, the underlying issue is far too common: patients can easily fall through the cracks during care transitions. Whether it’s a referral following an acute event like a heart attack or stroke, or from a routine primary care visit for symptoms that require further evaluation, these handoffs are critical moments. Unfortunately, they’re also among the most vulnerable to breakdown—plagued by administrative delays, unclear instructions and fragmented communication.
For patients with rare, undiagnosed or multisystem symptoms, the risks are even greater. That’s why it’s so important to understand how the referral process works, where it tends to break down and what you can do—as a patient or caregiver—to stay in control.
Why this transition is so critical—and so challenging
Primary care providers (PCPs) are the first line of defense in your health. They monitor your overall wellbeing, manage chronic conditions and identify when it’s time to escalate your care. But once your PCP determines that specialty care is needed, the path forward can become murky.
Some common pain points I’ve seen include:
- Delayed appointments due to long specialist waitlists
- Unclear next steps: “Do I need a referral to see a specialist?” is a question we hear often—and the answer varies by insurance, provider and geography
- Limited follow-through, with referrals getting lost in the shuffle of electronic systems or administrative bottlenecks
- Poor communication between the PCP and the specialist, resulting in redundant testing or disjointed care
- Lack of guidance for patients with rare, complex, or multisystem conditions that don’t fit neatly into a single specialty
These issues can lead to diagnostic delays, emotional stress and avoidable complications, especially for patients already facing significant health uncertainty.
How do doctor referrals work?
At its most basic, a doctor referral is a recommendation from your PCP for you to see a specialist—someone with advanced training in a specific area of medicine (e.g., cardiology, neurology, rheumatology).
But in practice, the referral process depends on several variables:
- Insurance requirements: Some plans require a formal referral to cover the visit; others allow you to self-refer.
- Health system limitations: Your PCP may be limited to referring within a specific network.
- Administrative follow up: Ideally, the referral is tracked and coordinated. In reality, the burden often falls on the patient to confirm the appointment, share records and ensure follow through.
The result? Many patients leave the PCP’s office with a name and phone number—or worse, a vague promise that “someone will call you”—and little idea what comes next.
Proactive steps you can take
The good news is that patients and caregivers don’t have to stay passive in this process. Here are several steps to help you take control of your care:
1. Ask specific questions before you leave the PCP’s office.
- What specialist are you referring me to, and why?
- How urgent is this referral?
- Will someone schedule this for me, or should I call?
- Do I need to bring anything to the appointment?
- What should I do if I haven’t heard back in a few days?
2. Follow up promptly and persistently.
Don’t assume the referral was processed or that someone else is tracking your case. Call the specialist’s office within a few days to confirm the referral was received and an appointment scheduled.
3. Organize and share your records.
Specialists often depend on test results, imaging and clinical notes to make an accurate diagnosis. Request copies of your records from your PCP, or ensure they’re being sent ahead of time. Bring them with you, if needed.
4. Explore specialist options.
If the first specialist is booked out for weeks or doesn’t feel like the right fit, know that you have options. Use reputable tools to search for specialists with experience with your specific symptoms or suspected conditions.
One such resource is MediFind, a platform designed to help patients—especially those with rare or undiagnosed conditions—identify the most relevant specialists based on clinical expertise, research and patient experience. While not a replacement for your care team, MediFind can be an incredibly helpful support tool in narrowing down the right provider.
5. Keep a log of communications.
Track dates, names of people you’ve spoken with and next steps. This can be invaluable if things fall through or you need to escalate an issue.
Special considerations for complex conditions
If you or your loved one is experiencing a combination of symptoms that span multiple systems—such as fatigue, joint pain, rashes or neurological changes—it may be hard to know which specialty to start with. In these cases, the traditional referral pathways often break down.
You may need:
- A multidisciplinary team or clinic (e.g., autoimmune centers, long COVID programs).
- A second opinion if the first specialist dismisses your concerns.
- Access to emerging research to help identify patterns and conditions that aren’t yet widely recognized.
Platforms like MediFind can be especially helpful in such cases by surfacing specialists with niche expertise, even if they’re outside your immediate network.
Final thoughts: You’re not alone
Being told you need to see a specialist can be overwhelming, especially when you’re already dealing with distressing symptoms. But with the right questions, persistence and tools, you can take control of the process.
Remember:
- You are your own best advocate (or your loved one’s).
- The referral process shouldn’t be a black box—you deserve clarity.
- There are resources to support you, even when the system feels fragmented.
Want to feel more confident in your next steps?
Learn how MediFind can help you find the right specialty care for your condition.
