Cracking the Code on Pathology Reports: Helping Patients Navigate Medicalese and Get Better Results - YouTube


Breaking Down the Barriers: New Ways to Understand Your Pathology Report

How AI and innovative clinics are helping prostate cancer patients decode their test results

You're Not Alone in Your Confusion

If you've ever stared at your pathology report feeling confused and anxious, you're definitely not alone. Thanks to the 21st Century Cures Act, we now receive our test results through patient portals as soon as they're ready—often before our doctors have even seen them. While this gives us faster access to information, it can also leave us trying to decode medical reports that weren't written with patients in mind.

Ted, a prostate cancer patient, knows this feeling all too well. He got his biopsy results on a Friday afternoon through his patient portal. "I saw carcinoma and I went, 'Holy [expletive], I have cancer,'" he shared during a recent webinar. "My first thought was, 'Okay, what do I do now?'"

Despite calling his urologist's office twice that afternoon, Ted didn't hear back until late Monday. He spent the entire weekend worried sick, even though his Gleason 3+3 cancer was actually low-risk and perfect for active surveillance.

The Numbers Tell the Story

Research from the University of Michigan shows just how common Ted's experience is. In a study of over 2,000 people, only 39% could correctly identify that cancer was present when looking at a standard pathology report. That means more than half of us would be getting it wrong!

Even more concerning, less than half could identify important details like their Gleason score or risk level—information that's crucial for making treatment decisions.

Patient-Centered Reports: A Game Changer

Dr. Katherine Lepitas from the University of Michigan has been working on a solution: patient-centered pathology reports that translate medical jargon into plain English. Instead of seeing "prostatic adenocarcinoma, Gleason score 3+3=6," you might read:

"There is prostate cancer present. This is low-grade cancer—the lowest grade given for prostate cancer. It often indicates slow-growing cancer that may be appropriate for active surveillance."

The difference is dramatic. When people reviewed these patient-friendly reports:

  • 93% could identify that cancer was present (compared to 39% with standard reports)
  • 84% could identify their Gleason score correctly
  • 93% could understand their risk level

Just as importantly, people with low-risk cancer showed appropriately lower worry levels when reading the patient-centered reports, while those with high-risk cancer maintained appropriate concern.

AI is Lending a Hand

Recent studies from multiple hospitals show that artificial intelligence (AI) is also helping bridge this communication gap. Using tools like GPT-4 to create simplified pathology reports:

  • Improved patient understanding scores from 5.23 to 7.98 points
  • Reduced doctor-patient communication time by over 70% (from 35 minutes to 10 minutes)
  • Helped patients read reports faster and with better comprehension

One innovative tool, called Prostate Pro at the Wiser Prostate Center, can take your complex pathology report and create a plain-language summary. While it's not always 100% consistent, it can give you a good starting point for understanding your results.

Meeting Your Pathologist Face-to-Face

Perhaps the most innovative approach is happening at the University of Michigan and Ann Arbor VA, where they've created "pathology explanation clinics." These are actual meetings between patients and pathologists to review results together—even looking at your tissue samples under the microscope.

The results speak for themselves:

  • 100% of VA patients said they'd recommend the clinic to other veterans
  • Patient understanding of their Gleason score jumped from 23% to 100%
  • Understanding of risk level went from 26% to 90%

One veteran summed it up perfectly: "Most people don't have a medical background and this program broke things down very well and clearly. The [clinic] takes a lot of the fear out of it. Everyone hears cancer and freaks out and this helped."

What These Clinics Catch

Beyond helping patients understand their results, these clinics are catching important medical issues. In just 60 patients, they found:

  • 4 cases where urologists misunderstood the pathology report
  • 2 actual errors in pathology reports
  • Several cases where treatment plans needed to be adjusted

In one case, a urologist told a patient they didn't have cancer when the report actually showed cancer was present. The pathology explanation clinic caught this miscommunication and got the patient proper follow-up care.

What You Can Do Right Now

While patient-centered reports and pathology explanation clinics aren't widely available yet, here's what you can do:

1. Don't Panic

Remember that most newly diagnosed patients know very little about prostate cancer when they first get their results. It's normal to feel overwhelmed.

2. Try AI Tools (Carefully)

The Prostate Pro chatbot at Wiser Prostate Center can help explain your report, but remember it's not always consistent. Use it as a starting point, not the final word.

3. Call Your Pathologist

Dr. Lepitas found that 85% of pathologists are interested in talking with patients about their results. The pathologist's name is usually at the bottom of your report. Call the pathology department and ask to speak with them—most will be happy to explain your results.

4. Use Reliable Resources

  • MyPathologyReport.ca has detailed explanations of pathology terms
  • The American Cancer Society has excellent resources for understanding prostate pathology reports
  • ASPI and other support groups can connect you with others who've been through the same experience

5. Get a Second Opinion

If something doesn't feel right or you're getting conflicting information, don't hesitate to get a second opinion from another pathologist or urologist, especially at a major cancer center.

Insurance Coverage

Currently, pathology explanation clinics are covered by Medicare and Medicaid in Massachusetts and through the VA system. Coverage is expanding, but it's worth asking your insurance company about reimbursement for "new patient consultation" visits with pathologists.

The Bigger Picture

With an estimated 313,780 new prostate cancer cases expected in 2025, clear communication about pathology results has never been more important. As one ASPI member noted, "There's a lack of consistency... there's no standardization" in how pathology reports look, which makes patient education even more crucial.

The good news is that change is coming. More hospitals are implementing patient-centered approaches, AI tools are improving, and pathologists are recognizing their role in direct patient communication.

Bottom Line

You have the right to understand your pathology report. Whether it's through AI-enhanced summaries, direct conversations with pathologists, or improved patient-centered reports, help is available and expanding. Don't suffer in silence—reach out, ask questions, and remember that many of us have walked this path before you.

For more resources and support, contact your local IPCSG chapter or visit our website for the latest information on understanding prostate cancer pathology reports.

About This Article: Information compiled from recent Active Surveillance Patients International (ASPI) webinar featuring Dr. Katherine Lepitas, University of Michigan, and current research on pathology communication. Always consult with your healthcare team about your specific situation.

Hospitals Turn to AI and 'Pathology Explanation Clinics' to Help Cancer Patients Decode Medical Reports

New initiatives aim to bridge communication gap between doctors and patients as complex test results become immediately available

Cancer patients are increasingly receiving complex pathology reports directly through online portals before their doctors have a chance to explain them, leading to widespread confusion and anxiety. Now, a growing number of hospitals are turning to artificial intelligence and innovative "pathology explanation clinics" to help patients better understand their diagnoses.

Among 698 pathology reports analyzed, the interpretation through LLMs significantly improved readability and patient understanding. The average communication time between doctors and patients decreased by over 70%, from 35 to 10 min (P < 0.001), with the use of IPRs.

The challenge stems from the 21st Century Cures Act, which requires healthcare providers to release test results to patients as soon as they're ready. While the law was designed to give patients faster access to their medical information, it has created an unintended consequence: patients often receive pathology reports filled with technical jargon before their physicians can contextualize the findings.

Dr. Katherine Lepitas, a clinical assistant professor at the University of Michigan who specializes in pathology communication, has witnessed this problem firsthand. In her research comparing standard pathology reports with patient-centered versions, she found that only 39% of people reviewing the standard University of Michigan prostate cancer pathology report could accurately identify that there was cancer present, according to a recent study published in JAMA.

The Human Cost of Medical Miscommunication

The consequences of this communication gap can be profound. Ted, a prostate cancer patient who participated in Dr. Lepitas's research, described receiving his biopsy results on a Friday afternoon through his patient portal. "I saw carcinoma and I went, 'Holy [expletive], I have cancer,'" he recalled during a recent Active Surveillance Patients International (ASPI) webinar. "My first thought was, 'Okay, what do I do now?'"

Despite calling his urologist's office twice that afternoon, Ted didn't hear back until late Monday, leaving him to spend an entire weekend anxious about his diagnosis. His experience reflects a common pattern: while urologists may view a Gleason 3+3 prostate cancer as low-risk and suitable for active surveillance, patients often interpret any cancer diagnosis as an emergency requiring immediate treatment.

AI-Powered Solutions Show Promise

Recent studies from multiple hospitals between October and December 2023 show that using GPT-4 to create simplified pathology reports significantly improved patient understanding, with patients scoring higher on understanding levels when provided with AI-generated reports, from 5.23 points to 7.98 points (P < 0.001).

The AI-generated reports, called Interpretive Pathology Reports (IPRs), translate complex medical terminology into plain language. For example, instead of listing "prostatic adenocarcinoma, Gleason score 3+3=6," an AI-enhanced report might explain: "There is prostate cancer present. This is low-grade cancer—the lowest grade given for prostate cancer. It often indicates slow-growing cancer that may be appropriate for active surveillance."

In oncological radiology reports, physicians found that communication time significantly decreased from 1116.11 seconds to 745.30 seconds (P<.001), and patient comprehension scores improved from 5.51 to 7.83 (P<.001) when using AI-simplified reports.

The Human Touch: Pathology Explanation Clinics

While AI shows promise for improving written reports, some institutions are taking a more personal approach. The University of Michigan and the Ann Arbor VA Medical Center have pioneered "pathology explanation clinics" where patients meet directly with pathologists to review their results under a microscope.

"100% of patients would recommend a [pathology explanation clinic] to a fellow veteran with prostate cancer," Dr. Lepitas reported from her VA study. The clinics not only improve patient understanding but also identify quality issues: in 60 patients seen so far, the clinics caught four diagnostic miscommunications, two pathology report errors, and helped correct treatment plans.

During these sessions, pathologists show patients their actual tissue samples and explain what normal versus cancerous cells look like. "The most interesting thing to me was the 3+3 cancer cells," one patient noted. "They don't even look like they're going to turn into something bad."

Overcoming Institutional Resistance

Despite promising results, both AI-enhanced reports and pathology explanation clinics face implementation challenges. Four evidence-based principles can help pathologists format information to communicate more effectively: use of diagnostic headlines to emphasize key points, maintenance of layout continuity with other reports and over time, optimization of information density for readers, and reduction of extraneous information.

However, creating patient-centered reports requires additional work from pathologists that isn't currently reimbursed. "Pathologists have been sort of like the culture of pathology is once it leaves our office... we don't think about it going to the patient," Dr. Lepitas explained. "That needs to change to say actually... most times we are now the people who give the result to the patient."

Insurance and Accessibility Concerns

Currently, pathology explanation clinics are covered by Medicare and Medicaid in Massachusetts and through the VA system, where they're billed as regular new patient visits. However, broader insurance coverage remains uncertain as the field evolves.

The lack of standardization also poses challenges. As one ASPI webinar participant noted, three different pathology reports from different institutions for the same biopsy can look completely different, even though the actual findings may vary by only 1%.

Looking Ahead

In 2025, we are likely to see data from trials offering completely novel approaches to treatment, and doctors and patients will have more choices than ever before, according to prostate cancer specialists. This makes clear communication about pathology results even more critical for informed decision-making.

The American Cancer Society estimates that 313,780 new cases of prostate cancer will be diagnosed in 2025, meaning hundreds of thousands of patients will face the challenge of understanding complex pathology reports.

Pathology informatics leaders at the University of Michigan are moving in steps to a fully digital practice as they put in place an innovative workflow for primary diagnosis, suggesting that technological solutions will continue to evolve.

As healthcare becomes increasingly patient-centered, the push for clearer pathology communication represents a broader shift toward helping patients become more informed participants in their care. Whether through AI-enhanced reports, direct consultations with pathologists, or improved standardization, the goal remains the same: ensuring that accurate diagnoses lead to informed decisions and better outcomes.

For patients currently struggling to understand their pathology reports, Dr. Lepitas recommends calling the pathology department directly. "Most pathologists will show you... take the time to show you what's going on," she said, noting that 85% of pathologists surveyed expressed interest in having more interactions with patients to explain their results.

Sources and Citations

Primary Sources

  1. ASPI Webinar Transcript (2025)
    • Cracking the Code of Pathology Records and Gleason Scores
    • Speaker: Dr. Katherine Lepitas, University of Michigan
    • Hosted by: Active Surveillance Patients International (ASPI)
    • Organizer: Howard Winsky
    • Source: Provided paste.txt document

Academic and Research Sources

  1. Enhancing doctor-patient communication using large language models for pathology report interpretation
  2. Enhancing Physician-Patient Communication in Oncology Using GPT-4 Through Simplified Radiology Reports
  3. Formatting pathology reports: applying four design principles to improve communication and patient safety
  4. Knowledge and worry following review of standard vs patient-centered pathology reports

Medical and Professional Organizations

  1. Prostate Cancer: Practice Essentials, Background, Anatomy
  2. Understanding Your Pathology Report: Prostate Cancer
  3. Prostate Cancer - StatPearls

Conference and Educational Sources

  1. Pathology Update 2025: Attending Live Meetings Enhances Engagement and Learning
  2. 2025 FSP Annual Conference
  3. Patient Conference on Prostate Cancer

University and Institutional Sources

  1. Department takes digital pathology to new level
  2. University of Michigan Department of Pathology
  3. Michigan Medicine

Recent Research and Clinical Updates

  1. Prostate Cancer Discovery Opens Door to More Tailored Treatments
  2. Management of Patients with Advanced Prostate Cancer. Report from the 2024 Advanced Prostate Cancer Consensus Conference (APCCC)
  3. 2025/2024 Advanced Prostate Cancer Newsletter

Professional Communication Research

  1. Communication skills in diagnostic pathology
  2. Prostate Cancer: Pathophysiology, Pathology and Therapy

Note on Sources

The primary source for this article is the transcribed ASPI webinar featuring Dr. Katherine Lepitas's presentation on pathology communication. This was supplemented with recent peer-reviewed research on AI-enhanced pathology reports, communication studies, and current developments in the field. All web searches were conducted on July 2, 2025, and URLs were verified as active at the time of publication.



Cracking the Code on Pathology Reports: Helping Patients Navigate Medicalese and Get Better Results - YouTube

Comments

Post a Comment

Popular posts from this blog

Dr. Christopher Kane of UCSD Health Appointed Chairman of the American Board of Urology

Image
  Dr. Christopher Kane of UCSD Health Appointed Chairman of the American Board of Urology SAN DIEGO, May 21, 2025 - Dr. Christopher Kane, a distinguished urologist and Professor of Urology at UC San Diego Health, has been appointed Chairman of the American Board of Urology (ABU), the organization announced today. Dr. Kane, who has served as CEO of UC San Diego Health Physician Group and Dean of Clinical Affairs at the UC San Diego School of Medicine, brings decades of experience in urologic oncology and leadership to this prestigious national position. Extensive Academic and Research Background Dr. Kane earned his medical degree from Uniformed Services University in Bethesda, Maryland, followed by a residency in urology at the Naval Medical Center San Diego and a fellowship in urologic oncology at the National Cancer Institute. He joined the UCSD faculty in 2007 after serving as a Navy physician for 12 years. As the C. Lowell and JoEllen Parsons Endowed Chair in Urology, Dr. ...
Read more

A 10-Second Steam Blast: The New Weapon Against Prostate Cancer?

Image
Vanquish® Water Vapor Ablation System, Francis Medical Steams Out Prostate Cancer The Vanquish® Water Vapor Ablation System, developed by Francis Medical, Inc. , represents an innovative approach to treating prostate cancer using water vapor (steam) to ablate cancerous tissue. This minimally invasive technique aims to target and destroy prostate cancer cells while minimizing damage to surrounding healthy tissue, potentially reducing common side effects associated with traditional treatments like surgery and radiation, Mechanism of Action:  The Vanquish system utilizes the thermal energy stored in sterile water vapor to ablate cancerous prostate tissue. During the procedure, a catheter is inserted through the urethra into the prostate, delivering water vapor directly to the targeted tissue. As the vapor condenses back into liquid, it releases stored thermal energy, effectively destroying the cancerous cells. This method is designed to respect the prostate's natural boundaries, ...
Read more

Researchers develop low-cost device that detects cancer in an hour | ScienceDaily

Image
Summary Sanjay S. Timilsina , currently Lead Scientist, StataDx, a spinoff from Wyss Institute, former Postdoctoral Fellow at Harvard Medical School and the Wyss Institute at Harvard University, PhD from UTEP Department of Chemistry & Biochemistry, and XiuJun Li full Professor in the Department of Chemistry and Biochemistry and of Forensic Science, & Environmental Science and Engineering, at the University of Texas at El Paso (UTEP) have developed a new portable device for cancer detection that offers several advantages over traditional methods: Key Features: - Low cost (a few dollars per device, <8 cents per assay) - Provides results in about 1 hour (vs. 12-16 hours for traditional methods) - Approximately 10 times more sensitive than traditional methods - Portable and doesn't require specialized instruments - Can detect both CEA colorectal and PSA prostate cancer biomarkers - Uses a "paper-in-polymer-pond" structure to analyze blood samples How it works: - U...
Read more