You’ve highlighted a critical—and often overlooked—challenge in prostate cancer care: **shared decision-making is only as strong as the information patients receive and understand**. If pathology reports are both error-prone and difficult to interpret, patients (and their advocates) are at a severe disadvantage.
Let’s break down the problem and explore actionable solutions:
## The Problem: Barriers to Shared Decision-Making
1. **Pathology Report Errors**
- As Dr. Jonathan Epstein points out, a 25% error rate in pathology review is alarming. Misclassification can lead to overtreatment or undertreatment.
- Reasons include variability in pathologist expertise, subjective interpretation, and inconsistent standards across labs.
2. **Incomprehensible Reports**
- Most pathology reports are written for clinicians, not patients. They use technical language and lack clear explanations of what the findings mean for the individual.
3. **Communication Gaps**
- Even well-intentioned clinicians may struggle to translate complex findings into actionable, understandable information for patients.
---
## Solutions: Empowering Patients and Advocates
### 1. **Promote Second Opinions and Central Review**
- Encourage patients to seek a second pathology review, ideally at a high-volume center or by a genitourinary pathology specialist (like Dr. Epstein).
- Advocacy groups can compile and share lists of reputable centers offering expert review.
### 2. **Standardize and Simplify Reporting**
- Push for adoption of synoptic (structured) reporting, which uses checklists and standard terms to reduce ambiguity and errors.
- Advocate for “patient-friendly” report summaries that explain key findings in plain language, including:
- What was found (e.g., Gleason score, margins)
- What it means for prognosis and treatment options
### 3. **Leverage Technology**
- Support development of digital tools and apps that translate pathology reports into lay terms and visualize risk.
- Promote platforms that allow patients to upload reports for expert review or AI-powered second reads (with human oversight).
### 4. **Education and Navigation**
- Train patient navigators or advocates to help interpret reports and guide shared decision-making.
- Develop and distribute educational materials (videos, infographics) that demystify pathology terms and grading.
### 5. **Advocate for Transparency and Accountability**
- Work with professional societies to set minimum standards for pathology quality and reporting.
- Encourage public reporting of error rates and lab accreditation status.
### 6. **Foster Open Dialogue**
- Encourage clinicians to invite questions and check for understanding (“teach-back” method).
- Support shared visits where patients, family members, and multidisciplinary teams review findings together.
---
## What You Can Do Now
- **Ask for your slides:** Patients can request their pathology slides be sent to a specialist for review.
- **Bring an advocate:** Have a trusted person with you during appointments to take notes and ask questions.
- **Use reputable resources:** Direct patients to organizations like the ANCAN and PCRI.
- **Push for change:** Join or support advocacy initiatives calling for improved pathology standards and patient-centered communication.
**Bottom line:**
Shared decision-making is only possible when patients have access to accurate, understandable information. Advocacy must continue to push for both higher standards in pathology and better communication tools, so that every patient is truly empowered to participate in their care.
So very important. Also helpful to write down all your questions before the visit. If you are not recording the visit, it's helpful to have a note taker and you can look back to see if you both left with similar understanding. I appreciated when my patients sent their questions through the patient portal prior to a visit.
Yes. As a journalist, I always do my research and jot down lists of questions in advance. So it is second nature to do the same when I prepare for an MD visit.
Especially, when you're first diagnosed, you can be distracted. Good to have someone else there taking notes.
You’ve highlighted a critical—and often overlooked—challenge in prostate cancer care: **shared decision-making is only as strong as the information patients receive and understand**. If pathology reports are both error-prone and difficult to interpret, patients (and their advocates) are at a severe disadvantage.
Let’s break down the problem and explore actionable solutions:
## The Problem: Barriers to Shared Decision-Making
1. **Pathology Report Errors**
- As Dr. Jonathan Epstein points out, a 25% error rate in pathology review is alarming. Misclassification can lead to overtreatment or undertreatment.
- Reasons include variability in pathologist expertise, subjective interpretation, and inconsistent standards across labs.
2. **Incomprehensible Reports**
- Most pathology reports are written for clinicians, not patients. They use technical language and lack clear explanations of what the findings mean for the individual.
3. **Communication Gaps**
- Even well-intentioned clinicians may struggle to translate complex findings into actionable, understandable information for patients.
---
## Solutions: Empowering Patients and Advocates
### 1. **Promote Second Opinions and Central Review**
- Encourage patients to seek a second pathology review, ideally at a high-volume center or by a genitourinary pathology specialist (like Dr. Epstein).
- Advocacy groups can compile and share lists of reputable centers offering expert review.
### 2. **Standardize and Simplify Reporting**
- Push for adoption of synoptic (structured) reporting, which uses checklists and standard terms to reduce ambiguity and errors.
- Advocate for “patient-friendly” report summaries that explain key findings in plain language, including:
- What was found (e.g., Gleason score, margins)
- What it means for prognosis and treatment options
### 3. **Leverage Technology**
- Support development of digital tools and apps that translate pathology reports into lay terms and visualize risk.
- Promote platforms that allow patients to upload reports for expert review or AI-powered second reads (with human oversight).
### 4. **Education and Navigation**
- Train patient navigators or advocates to help interpret reports and guide shared decision-making.
- Develop and distribute educational materials (videos, infographics) that demystify pathology terms and grading.
### 5. **Advocate for Transparency and Accountability**
- Work with professional societies to set minimum standards for pathology quality and reporting.
- Encourage public reporting of error rates and lab accreditation status.
### 6. **Foster Open Dialogue**
- Encourage clinicians to invite questions and check for understanding (“teach-back” method).
- Support shared visits where patients, family members, and multidisciplinary teams review findings together.
---
## What You Can Do Now
- **Ask for your slides:** Patients can request their pathology slides be sent to a specialist for review.
- **Bring an advocate:** Have a trusted person with you during appointments to take notes and ask questions.
- **Use reputable resources:** Direct patients to organizations like the ANCAN and PCRI.
- **Push for change:** Join or support advocacy initiatives calling for improved pathology standards and patient-centered communication.
**Bottom line:**
Shared decision-making is only possible when patients have access to accurate, understandable information. Advocacy must continue to push for both higher standards in pathology and better communication tools, so that every patient is truly empowered to participate in their care.
Excellent analysis, Dr. Perloe. I'd add one thing. I recommend that patients also bring a taperecorder or use a recording app on their phones.
I, in part, quit a practice because the doctor would not consent to be recorded,
Funny enough, that institution now uses AI-based recording.
Thanks.
So very important. Also helpful to write down all your questions before the visit. If you are not recording the visit, it's helpful to have a note taker and you can look back to see if you both left with similar understanding. I appreciated when my patients sent their questions through the patient portal prior to a visit.
Yes. As a journalist, I always do my research and jot down lists of questions in advance. So it is second nature to do the same when I prepare for an MD visit.
Especially, when you're first diagnosed, you can be distracted. Good to have someone else there taking notes.