236: What Happens When a Patient Sees Their Cancer for the First Time | Podcast with Michele Mitchell

What if the most frightening part of a pathology report is not the word cancer, but the silence that follows?

In this episode of the Digital Pathology Podcast, Dr. Aleksandra Zuraw talks with Michele Mitchell—breast cancer survivor, caregiver, national patient advocate, and longtime volunteer across Michigan Medicine, ASCP, the Digital Pathology Association, and MyPathologyReport.ca—about what happened when she saw her own cancer slide years after treatment. That moment changed how she understood her disease, her risk, and her role as a patient advocate.

This is not just a patient story. It is a digital pathology implementation story.

The episode looks at how digital pathology removes practical barriers to sharing slides, why pathology clinics matter, and what becomes possible when pathologists move from being hidden in the background to becoming direct contributors to patient understanding. Michelle and Dr. Aleks talk through the communication gap around pathology reports, the emotional cost of delayed explanation, and the real-world workflow of pathology clinic visits built to help patients review their slides with the pathologist who made the diagnosis.

They also discuss what the 21st Century Cures Act changed for patients, why immediate access to reports without interpretation can still create fear, and how pathology clinics can bridge the gap between raw data and real understanding. The conversation gets practical too: how patients can request a pathology clinic visit, what virtual pathology consults can look like, how billing and workflow concerns are already being addressed, and why the infrastructure question is smaller than many people assume.

If you work in digital pathology, pathology informatics, patient communication, or implementation, this episode is a reminder that visibility is not extra. It is part of the value proposition. And for pathologists who worry this is too far outside the traditional role, the episode offers a grounded counterpoint: the workflows, templates, billing structures, and virtual options already exist.

Highlights

• 00:00 – Why pathology needs to become more patient-centered
  Michele frames the core problem clearly: what often scares patients is not only cancer, but the silence around the diagnosis. 
• 00:34 – How digital pathology changes the patient experience
  Digital slides make it possible for patients to see their diagnosis, compare normal and abnormal tissue, and ask better questions. 
• 11:13 – What happened when Michele saw her cancer for the first time
  More than a decade after treatment, seeing her own slide changed how she understood her grade, her risk, and her daily health decisions. 
• 16:19 – Why visual pathology can change adherence and lifestyle
  Michele explains how the image-based explanation became a practical turning point, not just an emotional one. 
• 20:43 – The case for direct pathologist-patient communication
  The episode reviews why this can improve clarity, treatment understanding, clinic efficiency, and even professional satisfaction for pathologists. 
• 38:40 – What a pathology clinic actually looks like
  From preparation and consent to slide review, plain language, empathy, and follow-up, the workflow is much more concrete than many people assume. 
• 45:35 – ASCP’s certification workshop for pathology clinics
  Michele describes the national effort to make pathology clinics reproducible, scalable, and easier to implement. 
• 49:32 – What the 21st Century Cures Act changed
  Patients now get near real-time access to reports, but that access still needs interpretation, context, and support. 
• 01:03:23 – Pushback, logistics, and why the barriers are not where people think
  Time, reimbursement, scheduling, and virtual setup are addressed directly with examples already in practice. 
• 01:16:57 – The future: patient-friendly reports, AI, and pathology as part of the care team
  The episode closes on a practical vision: not hype, but tools and workflows that already exist and can be connected now. 

Resources mentioned

• Digital Pathology Place – website and educational platform referenced by Dr. Aleks as the home for her work and resources. 
• Digital Pathology 101 – Dr. Aleks’s book, referenced in the broader discussion of patient and pathologist education. 
• Michigan Medicine breast pathology clinic – launched in 2023 as a patient-facing breast pathology clinic model. 
• ASCP pathology clinic certification workshop – national workshop co-developed to help institutions build pathology clinics. 
• 21st Century Cures Act – legal framework behind near real-time patient access to pathology reports and related health data. 
• MyPathologyReport.ca – patient-friendly pathology education resource reviewed with patient advocate involvement. 
• American Cancer Society Reach to Recovery – support resource mentioned for breast cancer patients. 
• Scanslated – patient-friendly report interface discussed as part of a future-facing model for pathology communication. 
• Virtual pathology consults/telehealth setup – discussed as a scalable way to lower implementation friction.

Transcript

00:00:00

I want pathology to move from the doctor's doctor to truly becoming the patient's doctor. And we're making real progress because what often scares patients when they read their pathology report isn't so much the word cancer, it's the silence. This program equips pathologists to break that silence. And honestly, it's one of the things I am most proud of. And the ASCP should be proud as well because no other major pathology organization on CAP or USCAP currently offers a certification

00:00:34

workshop for pathology clinics. I truly believe that this work can move the entire field forward in patient care. It turns traditionally hidden specialty into direct human visual conversations where patients can finally see their diagnosis. And for many patients, that moment when the invisible becomes visible and the unknown finally makes sense is a moment where fear begins to turn into understanding and understanding begins to turn into trust. Welcome my trail blazers. My guest today, Michelle Mitchell, is a cancer

00:01:17

survivor and patient advocate who lived this from the patient side and now works closely with pathologists. Welcome, Michelle. How are you today? >> I'm good. Thank you so much for having me. This is it's such a pleasure meeting you and speaking to your listeners. Thank you for the opportunity. >> I'm so happy to have you. A couple of backstory facts because you saw your images. You talked to a pathologist at Michigan and looked at your digital slides years after your diagnosis and

00:01:48

that changed how you understood your cancer and your options. And most people still never see their images. A pathologist looks at the tissue, writes a report, then the treating team makes decisions based on the report, and the images stay in the background. And digital pathology doesn't solve everything, but it removes a lot of practical barriers to accessing and sharing slides. And that opens the door to more direct conversation with patients. And this is basically what this episode is going to be circling

00:02:21

around because there's going to be you have like such a huge story. I I suspect it's going to be a long one. Uh but because this is the digital pathology podcast, I want to understand from your perspective, what was the digital pathology piece that helped you that can help patients? And as you trailblazer listen to this, think about your own context, patient, family member, clinician, and what it would look like for you or other people you care for to actually see those images and understand

00:02:52

the story they're telling. So Michelle, we start with you for those who have never met you. H you're a patient advocate, but tell the story about who you are and why what you went through is important for others as well. >> Well, thank you so much again for the opportunity, Alec. This is truly an honor and I'm so grateful to be here. As she said, I'm Michelle Mitchell. I'm a breast cancer survivor, a caregiver, and a national patient advocate. Everything I do is on a volunteer basis and I've

00:03:25

never accepted a dime for this work because for me it's a calling, not a profession. I'm also a wife, a stepmother, and proud grandmother of 10 grandchildren. So when I talk about the importance of getting healthc care right, it's very personal on every level. Let me share a little of how I got here because it wasn't a straight line. You know, cancer shows no bias and disregards the challenges one may already face in life. In 2005, I married my husband, Rey, who had four children.

00:03:58

This was thrilling for me. I had not been a parent before, and I relished the opportunity. But nine months later in 2006, I received devastating news from my ultrasound and mammogram results. It said highly suspicious malignancy, breast cancer. I went home to tell Rey he suffered his first stroke within a half hour after I told him. A month later, I had to make the devastating decision to take him off life support after multiple strokes, which were all caused by an infected tooth. Just one month after his burial, I started my own

00:04:38

breast cancer journey at the University of Michigan Comprehensive Cancer Center. So from the very beginning, my experience of cancer has never just been my own. I was a patient and a caregiver simultaneously. And that has never really stopped. In 2013, my stepdaughter from Ry Trisha lost her three and a half year battle with non-hodkins lymphoma. She had asked me for my help in navigating the University of Michigan Health System. And together with her sisters and her mother, we tried desperately to get her well. We

00:05:17

even went to MD Anderson, Barnes Jewish Hospital in St. Louis, and Sloanketing in New York. But every experimental treatment failed. She died at the tender age of 23. And that loss changed me permanently. Then my parents had open heart surgery just 11 days apart. My dad's lungs never recovered. I was their caregiver, too. Dad passed away in 2014. In 2016, my husband Bill had a melanoma recurrence and he discovered he carries a MITF genetic mutation that predisposes him to both melanoma and renal cancer. My

00:06:04

mother's health then began to fail. She had pulmonary hypertension and congestive heart failure. We lost her in 2019. And more recently, I've helped countless friends and extended family members navigate their own cancer journeys, oral cancer, uterine cancer, osteocaroma, and many more cancers. Each time, I bring everything I've learned about the system, about pathology, about asking the right questions to help them feel less alone and more informed at the moments that matter most. You know, I take my role as

00:06:42

a patient and a caregiver in each and every one of these circumstances very seriously. Through all of it, I felt I had a greater purpose behind me, behind these seemingly unbearable losses. I was convinced these things did not happen by chance, and my path was made clear. These experiences ignited a passion within me to pursue patient advocacy. Not just for myself, but for every person who's ever sat in a waiting room alone, afraid and without enough information to understand what's going

00:07:16

on. I spent 25 years as portfolio manager in the information systems project management office at Blue Cross Blue Shield of Michigan. So I understood how healthc care works from the inside. I retired in 2009. I had found my own new work. I began volunteering at the Michigan Medicine Cancer Center and then co-chared the Department of Pathology Patient and Family Advisory Council for over nine years. I also volunteer at the American Society for Clinical Pathologists where I am a patient champion. the Digital

00:07:56

Pathology Association patient and family engagement committee and locally here the Michigan hospital association patient engagement committee, the Michigan Clinical Trials Consortium and the MyathologyRereport.ca website where I'm a patient advisor. In addition, I work with the American Cancer Society Reach to Recovery program, meeting directly with newly diagnosed breast cancer patients. People come to me because I sat in nearly every seat in the health care system, patient, caregiver, advocate, and advisor. My

00:08:36

lived experience is my expertise. With the advent of personalized medicine, AI, and a more educated patient population, I believe patient advocates are ready to make real change. The era of the passive patient is over. And I will keep using my voice until every patient feels seen, heard, and understood. >> What a journey, Michelle. This is it's I don't even know what to say because one loss can basically put somebody down and they never get up, never recover and it's another loss on top of the one that they

00:09:20

lived and you've suffered so many and you managed to turn it into such a unstoppable force. before this uh podcast episode, we were chatting what you are all doing and it's it's really a lot uh let's just put it that way in many organizations trying to get into more to basically turn this like I don't know if I had a such a sad intro in any of my podcasts you know because it's digital pathology and it's nice technology but like you say the patient patient journey is so

00:10:00

under represented. That's why it's so important to have patients talk about it because everybody's going through this journey on their own. And it's not just in healthcare, but healthcare is such a great example because it's actually complex to navigate. But probably it's in every single area of life, you know, marriage, parenting, like everybody does that, but nobody talks about it. Everybody is like smiling strong. I can do it. And a lot of them are not that smiling inside and cannot do it in the

00:10:35

less traumatic areas of life. And not to mention something like okay cancer diagnosis which can basically be like your prelude to death. >> Yeah. >> So a lot of admiration, respect. Thank you so much for joining me. I want to go back to your personal story, uh, your personal diagnosis. So, first question, quick question. How old were you when you were diagnosed? >> Uh, 46. >> Okay. 46. I'm 41. My grandma, I think she was 54 when she passed away from breast cancer. So, yeah, these are young

00:11:13

people h getting cancer. What I want to ask you is you talk about the day that was about 10 11 years after your diag diagnosis when Dr. Jeff Mayers at Michigan showed you a digital image of your original tumor slide. So that was already you know a decade after. So speaking of cancer I did have a thyroid cancer and I've been cancer free for like over 20 years. I other than taking my ceroid medication, I don't think about it. Right. 10 years after being cancer-free, I didn't think about it.

00:11:48

But you saw this image 10 over a decade after and it still had impact. >> Yes. >> So, can you take us to that moment when you saw the image on the screen and what did it explain to you like a decade after you being active in that space taking care knowing so much this like moment of seeing? Yeah, thank you for that question. That moment is one I will never forget. Um, just a little bit of background for your viewers. In 2006, I had gone through a lumpctomy, four rounds of chemotherapy, six weeks of

00:12:22

radiation, and over eight and a half years of endocrine therapy. So, my treatment officially ended in 2015. And I was grateful uh to be alive. But here's the striking part. I had never seen my pathology report. That just didn't happen in 2006. I had never seen my slides or digital representation of my cancer. I had absolutely no visual connection to what had been happening inside my body. In 2016, as I mentioned earlier, I was co-chairing the department of pathology patient and family advisory council at

00:13:01

Michigan Medicine. Uh, and you mentioned 10 years after my diagnosis, I was offered a unique opportunity. I was the first person from our PAC to volunteer to see my own digital pathology images. And that's when Dr. Jeff Meyers, who was the co-chair of the PAC, guided me through what I saw on the screen. >> So, first Jeff showed me what normal digitized breast tissue looked like, and then he opened up my digitized image. um of my original breast tumor back in 2006. I was looking at my own cancer, my

00:13:39

actual cells for the first time, and what I saw were dense black dots, and those were the nuclei of my cancer cells. Dr. Meyers explained that the number and density of those nuclei confirmed that I had had a grade two invasive ductal carcinoma, much more aggressive than I had ever imagined. There's only three grades. I didn't even know grade was a term. And he told me something that stopped me cold. Those stemlike cells could still be circulating in my body because it was an invasive ductal

00:14:18

carcinoma capable of re reactivating. So Jeff took a moment to comfort me when I needed it most. The news was overwhelming and unexpected, but his compassion stayed with me. You know, in a world filled with starched white lab coats, he showed that compassion and clarity still matter, at least to this patient. You know, most patients don't know this, but the pathologist, not the rendering or ordering physician, makes the diagnosis. They are the first person to truly see your disease. And that moment is not

00:14:55

routine. It's lifealtering. I met my pathologist and it changed me forever. It gave me clarity, control, and a mission. Before my pathology clinic, I felt lost and overwhelmed really seeing my diagnosis and having it explained to me. Finally, I understood my cancer. And I believe every patient deserves that. >> Definitely. I think it's like the power of this lays in how much it impacted you even a decade after your like basically your treatment was done right. You knew everything from from what you went

00:15:42

through from oncology visits reports and this image these black dots on this slide they impacted you so much after this diagnosis because like when you break your hand and it's a cliche comparison to radiology I know right you go they take an X-ray you see it so of course you saw it you're not going to be overexerting your hand even if you feel great but it's like immediately it's like incorporated and in pathology this is like totally obscured you mentioned that uh when you were diagnosed you didn't even see your

00:16:19

report right now patients have the report they can read it they can you know paste it in chat GPT or whatever they can try to figure out what it means and relate to it in some way I want to ask a practical question uh and I probably I'm going to be going back to like wow a decade after it still made such an impact. The practical question, okay, you've been in treatment, you were trying, you know, to stay healthy. When you saw it, what changed in your life? Like other than okay, there was this

00:16:51

moment. Was there something happening after this moment in your life that that changed as well? >> Absolutely. I mean, that that image gave me something no report could ever have done. It was a visceral understanding of what I was dealing with. Uh before that visit, as you mentioned, I thought I understood my diagnosis. Um I I thought I you know, I was told I had a stage 1A um breast cancer and essentially they had gotten it all. It was no big deal. >> You know, I attended all my medical

00:17:26

appointments and did everything my multid-disciplinary team told me to do, but nothing nothing prepared me for that moment. So with that diagnosis of a grade two tumor, I I didn't understand what grade meant in the context of my own body. After the consultation, uh the clarity just it became crystal clear for me. I printed a copy of the digitized cancer. I keep it framed on my nightstand. It's a constant daily reminder to live a healthy lifestyle. And the experience, as you mentioned, was truly transformative. Transformative

00:18:07

for me. I lost over 100 pounds. I changed what I ate. There are certain foods that you can eat that are estrogen of sort of plant-based estrogen. I stay away from those. I exercise regularly to keep the weight and the inflammation down on my body. Inflammation is not good for these cancer stem cells that are floating in my body. um they could reactivate because of inflammation. You know back in uh 2016 patientf facing digital pathology wasn't a standard. The only software available >> still is not a standard that is the sad

00:18:45

thing because we have all the means >> but it's far from standard >> right back then they had something called image scope which Dr. Meyers and his team had installed on my laptop. And I was trained on how to annotate my own pathology images and learned how to print them. And from that point on, Dr. Meyers and I uh did what we called we took the road uh the show on the road, raising awareness and educating about digital pathology, about the power of giving patients visual uh access. So

00:19:23

this is back in 2016. We took it all around the country. >> Uh I spoke along with him. He was a visionary in this regard. The experience also reshaped my advocacy. I went from surviving cancer to being on a mission to ensure that every patient could have that same access and clarity. I believe every patient should have access to their digitized representation of their disease and the opportunity to meet with the pathologist who made that diagnosis to ask questions and truly understand what matters. And you know, Alec, the

00:19:59

evidence supports this shift. Multi- uh multiple peer-reviewed studies highlight the value of pathologists meeting directly with patients. In fact, 85% of patients are interested in uh pathology patient consultations and surprisingly 86% of pathologists are interested in conducting these and even more interesting is that 83% of clinicians support it. Mhm. >> Um, one other study I'll point out is called the clinicians are from Mars, pathologists are from Venus. And what this study showed is that clinicians

00:20:43

misunderstood pathology reports about 30% of the time. So the benefits are clear for all parties. For clinicians, there would be greater focus on prognosis and treatment, improved patient adherence to treatment plans, better informed patients, more patient centered care, more efficient clinic encounters that they would have with the patient, uh stronger multidisciplinary collaboration, and uh probably reduce burnout. And for pathologists, it's the opportunity to explain complex diagnosises directly, improve diagnostic

00:21:22

accuracy through engagement, eliminating the blackbox perception of pathology. It elevates the visibility of the field and the value of the field and it you know it gives you an increased professional uh satisfaction and u multiple touch points could be allowed for patients along their cancer journey. Ultimately it isn't about technology as you mentioned it's about connection clarity and giving patients the understanding that they deserve. All the pieces are in place. We just need the will to do it

00:22:00

>> very much. And uh so couple of things to highlight first like how it influences compliance and adherence to treatment. And this is not the first time I'm hearing this and I had Dr. Lia Joseph uh on my podcast and that was something she mentioned as well that a patient seeing this finally understood her biomarker status and she knew why she actually needs to take the medication where in I think in her like demographics there was some kind of prejudice about taking uh specific medicines right so she was not

00:22:35

really compliant because she didn't understand why she should and the moment she saw it it changed how she lived like basically what you're telling me you saw it and you you changed how you live and and then the second thing that uh see I was not really thinking about is of course clinicians may may may misunderstand this this is like the other way around right pathologists are not the treating phys physicians they may not understand all the treatment regimes the same clinicians are not the

00:23:07

diagnosing physicians so the communication there And basically seeing a in conjunction with pathology report is a win-winwin for the whole care team and by care team I mean the treating physician the diagnosing physician which is going to be the pathologist and the patient who's part of this team because without the patient without being compliant being willing to undergo this treatment there's no cure there's no treatment right and what you say empowering patients and making them part

00:23:42

of the care team and I love that this is part of your mission because this is something people just don't talk about like what are you going to go first you have to survive this journey it's not something you're going to talk uh to a like not a close friend over coffee right it's it's kind of still a taboo topic you may say okay yeah I'm I'm fine now but you don't want to bring people from the outside into this very tough journey. So having somebody like you who already lived through a big storm, I

00:24:18

would call it, and survived it and is willing to talk about it and is super powerful and I'm I'm super happy to have you on the podcast. And you said uh you mentioned the compassion of your pathologist that you you didn't feel like it was just diagnosing a sample that you actually felt like a patient when the pathologist took time to walk you through your slides. And you're totally right like the technology doesn't really matter. It can be a static image. You can make a digital

00:24:49

copy of a glass slide like with your smartphone with whatever technology you have if the will is there to do it. The question is emotionally how did this change your relationship with your body, your fear of recurrence and your sense of control to see these actual cells that had once been in you and you mentioned you did want to print out the image. Tell me a little bit about that as well because I know some people who didn't want to see the image because they had enough tissue understanding

00:25:26

that they were afraid to see more that they kind of bargain for. So there are like two sides of this coin, but you say 85% or over 80% clinicians, pathologists, patients, they want to see the images. They they it's going to be beneficial for them. So yeah, the impact for you about this feeling of not having just a sample diagnosed but you being the patient in this whole story. >> Yeah, it was uh profoundly humanizing. In January 2022, the Pathologist magazine published a feature article that I wrote. Uh it was

00:26:05

entitled not just a sample >> and that um title captures exactly what I experienced with Dr. Myers. Uh, for the first time in my cancer journey, I was not a file number, a case number, or a sample. I was a person, a whole person being seen. On a personal level, that image changed how I think about my weight, my choices, and how I care for my body. And when you actually see what's inside of you, when it's it has a face, if you will, you make different decisions. And what stayed with me is

00:26:41

the sheer size of the enemy I'm I'm still facing. >> And I'm convinced this transformation will have a positive impact on my health moving forward. All because I saw my digitized cancer and the opportunity to walk through it with my pathologist. You know, as far as the fear of reoccurrence, that never really leaves you. It just waits in the background until something brings it back. Mhm. >> In fact, in December of 2022, um I had a real scare that became a cautionary tale about real time access

00:27:19

to your medical information without anyone there to interpret it. If I may just explain, earlier that year, I was experiencing persistent back pain and I had had a X-ray in June. um I have osteoporosis from the all the cancer treatment that I went through and the X-ray said, "Yeah, your your osteoporosis is worse and you have significant scoliosis and they said that was likely from the radiation." And in July of 2022, my um medical oncologist ordered a bone scan which showed no metastases. And

00:27:56

this was all reassuring news, but my pain continued. So on December 1st of uh 2022, I had two my primary care doctor at Michigan ordered up two MRIs in my spine. I expected to see, you know, some additional changes. But the very next day, I read my uh report in the patient portal and it said a bone lesion 2.3 cm concerning for metastases given underlying malignancy. Imagine my shock when I saw that. It was in my L5 vertebrae at that point. December 2nd, 2022. Nothing else mattered. Not the laundry,

00:28:39

not the Christmas preparations. I only had one question. Had my breast cancer returned? And this time in my bones. So 5 days later, I went underwent uh two additional tests. Um an MRI with contrast this time. followed immediately thereafter with a PET scan. So, while I'm lying in the room preparing for the PET scan, drinking my cocktail, I began to receive push notifications and it said the M MRI results were already there. There was no one in the room with me. I had my cell phone and I couldn't

00:29:18

resist look looking and I saw in the MRI results metastatic folky and additional bone lesions now in my L1 and L4 and there was no one in the room to ex explain to me but I kind of knew what metastatic meant no contact. So I did what most patients would do in that space. I googled it. The happy thing to report here is for 17 days I lived in fear believing my cancer had returned. Finally, I had a biopsy, which was a very invasive procedure requiring the interventional radiologist to drill through my spine. It was

00:29:59

painful, but I needed those answers. And the results said that it was not cancer. Dr. Meyers called me the day after. He personally looked at the pathology report on a Saturday morning and called my husband and I and said it is not cancer which was I was so grateful. They were heangiomas which are benign and most likely had been there all my life. So, you know, when you have cancer, so much happens to you. Decisions are made, treatments happens, and you feel like a stranger in your own personal care. So,

00:30:39

seeing my slides and having someone explain it to me feels like you're a participant again, you know. Um, for me, the question became real the moment I saw that digitized image on the screen. I wasn't just a pixel. It brought clarity, understanding, and empowerment. You know, fear thrives in the dark. When someone turns on the light, literally shows you the image. Fear has less power. I won't pretend the fear of reoccurrence went away entirely. It doesn't. But having that knowledge, that

00:31:14

clarity about what had been going on in my body and what to watch for gave me something concrete to hold on to. And I think about all the patients who have never get that experience, who go through their entire cancer journey, never truly seeing or understanding what's growing inside them. That is what drives me every single day. That's powerful and that is something super important to highlight because the first thing I h get a push back about when I like talk about it on social media I'm working on this book to

00:31:53

describe the process uh how patients can get access to their images right and I was talking about it on social media first push back is oh the patients will not understand the radiology it's a break you can show it and they will see and they understand but oh so much more expertise is needed to explain a pathology image on one hand yes it's not like such a mainstream image that you're going to see when it comes to medical imaging on the other hand like you're mentioning right now okay they were

00:32:29

there were fosi metastatic fosi in the radiology report they looked as they looked on the radiology image but nobody knows how they actually look and what these cells are until a biopsy is taken, until a pathology image out of your tissue is generated. And okay, it may take 15 more minutes to explain, but then it is what it is. There are the cells that are there like it's definitive. If you need a IHC marker, you do the IHC and you see if the biomarker is there or not. It's no more like guessing.

00:33:06

And I would don't want to say radiology is guessing, but it's the step before you take the biopsy because biopsy pathology is the definite diagnosis that the treatment is based on. Right? So here's the counterargument. Yes, maybe it takes 15 more minutes to explain, but then once it's explained, it's the real thing, not the suspicion of something that generates fear. So thanks so much for sharing that. And as you said in the intro, you now accompany other patients to Michigan and other centers and you

00:33:38

hit the road uh with your pathologist to talk about it. Um you've seen many of the patients view their slides for the first time. Could you share one story that shows how an image-based conversation with the pathologist changed patients questions decisions, made them be like more calm or have more peace of mind? Um, do you have any examples other than your own? >> Well, um, you know, as as you mentioned, I have accompanied many patients to appointments at the cancer center at Michigan Medicine and elsewhere, but I

00:34:14

want to be candid. I haven't personally sat beside a patient while they view their digitized slides for the first time. However, I have seen very closely what happens when the opportunity comes too late. Last year, a dear friend of mine, someone who was like a sister to me, was newly diagnosed with breast cancer. She asked me to help her and of course I said yes. So, like many patients, she was she saw her pathology report filled with terms and felt overwhelmed and un they were unfamiliar to her. Words like great and invasive

00:34:53

carried weight but not clarity. So, we did what we could. At the time I wasn't able to get her a meeting with her pathologist initially. We did what many patients did like you mentioned. We turned to chat GPT to try to make sense of her particular pathology report and together we translated the report into what we thought was plain language and we built a long list of questions for her pathologist and her medical oncologist. So here we are. She sent multiple messages to her career traininee trying into trying to fill the

00:35:30

gaps in searching for reassurance. Eventually, she did have the chance to meet with her pathologist. I wasn't present with her and review her digitized slides. But by that point, she was already far down the road. She was armed with questions, yes, but also carrying weeks of unnecessary anxiety and uncertainty. And what struck me most was this. If she had been able to sit down with her pathologist from the very beginning, if someone had simply shown her her images and explained what they meant in context of her own body, it

00:36:10

would have changed everything. It would have grounded her understanding earlier, reduced her fear, and likely prevented so much of the back and forth through the messaging in the portal that followed. That experience reinforced to me that every patient that patients are already seeking answers where they can, like you mentioned, but nothing replaces a direct image-based conversation with the expert who made the diagnosis. That's where clarity lives and where peace of mind can begin >> and I think it shows the gap and there

00:36:50

is the solution that you were working on. So, so the gap that I see here okay you have a patient who wants to know who tries to find out and of course the information comes in in the portal. So there is where you communicate who does this communication even go to like administrative person some inbox like I don't know sometimes they answer me through my portal sometimes they don't but basically there is no like established infrastructure established clear path on the caregiver side to actually be responsive to these things

00:37:28

and you know everybody is busy there is million patients with different conditions, right? So, if there is a thing that the caregivers don't know what to do with, they probably do nothing with it like in this case. And then the patient has to like bang on this door and until they get annoying enough that somebody figures out a way. And by that point, like you said, the treatment probably begun. The anxiety keeps piling up. The patient is probably labeled as somebody that is super inconvenient and difficult. How about

00:38:03

being proactive about it, right? Especially after the research that you cited about over 80% of all the care care team, let's call them care team group wants to do that. And what I want to mention here is the pathology clinics where patients can book time with a pathologist and you've worked with colleagues like Dr. Leah Joseph and others on this idea. And for someone who has never heard of that, what does a typical visit look like from the moment a patient walks in to the moment they leave in a pathology clinic? What is a

00:38:40

pathology clinic? >> Well, you're you're absolutely right. Most people think that uh pathology happens in a black box behind the scenes far away from patients. But what happens when that hidden specialty becomes a face-to-face conversation where patients can actually see their disease, ask questions in real time, and finally understand their diagnosis. This is a a powerful question because it helps demystify something that sounds far more complicated than it is. At Michigan Medicine, the PAC most recently asked a

00:39:19

simple question. If patients are craving connection and clarity, why are pathologists so hidden? And that led to something really bold. The creation of a breast pathology clinic inside the cancer center where patients can directly meet with a pathologist. Michigan said yes. The clinic launched in 2023 at Michigan Medicine for breast cancer patients led by Dr. Ruba Ali Femi, director of breast pathology there and in collaboration with Dr. Mustafa Ysef who leads the informatics and digital pathology uh team at Michigan

00:39:57

and is also a breast pathologist. They made it successful. It wasn't built for patients. It was built with patients from the ground up. So what does a typical visit actually look like? Well, before the visit begins, the pathologist is preparing in a very intentional way that includes a thorough review of the pathology report, clinical history, imaging context, and all digital slides. The pathologist is not just reviewing for accuracy, but thinking ahead about how to translate complex findings into

00:40:33

language and visuals the patient can actually understand. In some cases, a lab or specimen tour may even be offered if the patient is interested in seeing more of the diagnostic process. At the same time, the environment is intentionally set up as private, HIPPA compliant, calm space to ensure the patient feels safe and comfortable. When the patient arrives or logs in virtually, the visits begin with a warm introduction and a clear role setting. identity is confirmed and if family members are present or trainees are

00:41:10

present, the patient is always asked who they would like to be included in the discussion. That small step reinforces control, consent, and trust. The pathologist then establishes rapport and sets expectations very explicitly. The purpose of this visit is to explain as a dedicated time to review the pathology report, slides, digital images, answer questions, and build understanding. Patients are reassured that this is a conversation, not a lecture, and that they can pause at any time. The visit

00:41:47

typically begins with open-ended questions. For instance, what is your understanding of your disease so far? what would you like to focus on today? And this allows the pathologist to meet the patient exactly where they are rather than assuming a starting point. From there, the explanation of the pathology report begins. The pathologist uses plain non-technical language and often starts by showing normal tissue before moving to the abnormal tissue. Digitized slides are so useful and they're intentionally used to make the

00:42:26

diagnosis visible and concrete, turning what is often abstract information into something that the patient can actually see. Through the entire visit, the pathologist intentionally slows the pace. Information is delivered in small digestible segments with frequent pauses to check for understanding. Questions like, "Does this make sense so far? What questions are coming up for you here?" are built into the flow, not safe for the end. Emotional responses are actively recognized as part of the

00:43:01

clinic encounter. If a patient becomes quiet, overwhelmed, or distressed, the pathologist does not push forward. Instead, emotions are acknowledged directly. Statements such as, "This is a lot to take in." Or, "I can see how difficult this is for you," are used to create space for processing. And a key part of the visit is balancing information with empathy. The pathologist may gently prepare patients for difficult information that he or she is about to share, offering sort of a

00:43:39

warning shot. For example, there are some findings I want to go through carefully with you now or this may not be what we had hoped for. This approach helps reduce shock and preserves trust. Once the diagnosis has been explained, the pathologist summarizes the findings in clear structured language and connects them to what happens next in the broader care pathway. The scope is reinforced. The pathologist is not deciding treatment, but ensuring the patient fully understands how the diagnosis would was made and what it

00:44:17

needs. Before the visit ends, patients leave with concrete takeaways, a written summary, and potentially trusted educational resources they can follow up on, and a clear understanding for follow-up questions through their care team or the patient portal. After the visit, the encounter is documented in the electronic health record so the oncologist and broader care team can build on the same understanding through a visit note. Coordination and continuity are central to the model. There is also a reflective

00:44:53

component built into this work. Pathologists are encouraged to seek feedback, consider the patient experience surveys, and continuously refine how they communicate because the goal is not just accuracy, but clarity and connection. And importantly, the work expanded beyond individual institutions. I as I will note now it has expanded beyond um just Michigan um >> to something larger as you mentioned together with Dr. Lia Joseph and a group of like-minded pathologists from across the country, many of whom were already

00:45:35

actively running pathology clinics. And with me as the sole patient advocate in the group, we co-developed a national ASCP certification workshop on pathology clinics. Legion and I originally pitched the idea to the ASCP and they immediately moved forward, funded the project, assembled a national team of experts, many of which Legi had identified and we be we began to write a how-to guide for the field. It took about a year and a half to write that full manuscript and then the ASP built the workshop

00:46:19

certification program. This program is built from people actually doing the work. It covers everything from making the case to the seauite to billing and sustainability to the full structure of how to conduct the patient encounter itself. It's a comprehensive practical framework designed to make pathology clinics reproducible and scalable. I want pathology to move from the doctor's doctor to truly becoming the patient's doctor. And we're making real progress because what often scares patients when

00:46:54

they read their pathology report isn't so much the word cancer, it's the silence. This program equips pathologists to break that silence. And honestly, it's one of the things I am most proud of. And the ASCP should be proud as well because no other major pathology organization, not CAP or USCAP, currently offers a certification workshop for pathology clinics. I truly believe that this work can move the entire field forward in patient care. It turns traditionally hidden specialty into direct human visual conversations

00:47:34

where patients can finally see their diagnosis. And for many patients, that moment when they the invisible becomes visible and the unknown finally makes sense. It's a moment where fear begins to turn into understanding and understanding begins to turn into trust. Mhm. I am amazed like how granular the guidance is in this like and how patient centric not only regarding the information but also regarding the whole patient experience in this clinic. And I love that there is no like an official

00:48:18

way for pathologists to do that because even before the survey, before this uh work, there have been several pathologists that started doing this work on social media basically looking at cases, looking at slides, explaining what's there. But because there was no other way, right? there was no official or or like an hospital approved way to actually bring the patient and tell them hey this is what you're dealing with and the like the gap between actually being with uh your diagnosing physician in the

00:48:56

room and like for them having this guide okay this is how I talk to patient this is how I talk or don't talk about uh care because maybe another physician is going to talk about here is so big in comparison to okay you Google and you find a YouTube video and you look at something that has the same name as what you have on your report but other than that okay you can see from the histo pathology standpoint how your cells look like right so this is a huge closing the gap and speaking of reports many

00:49:32

trailblazers and many patients listeners may not know that laws like The 21st Century Cures Act and open notes rules change access to medical information. So in plain language, what rights do patients have today to their pathology reports, slides, and digital images? And obviously I'm the most interested in digital images and what does that mean in practice if they want to see their images? Like tying back to what you said about your friend that like had to bang on this door so much like is there a way

00:50:06

to not have to do that? Is there an easier way? >> Well, first let me um tackle the cures act law referring to >> and this is something I feel uh so strongly about. I I actually wrote an article for the pathologist entitled >> by the way I want to give a shout out to the pathologist because this is how we met as well. I read your article, you read my article because I was recently interviewed about like my platform, my podcast and everything and this is how we came in touch. So here and a shout

00:50:39

out to the pathologists. If you have not read any articles, we're going to put some in the show notes. >> Yes, they are fantastic. I think of it as like a partner now because they are just open to all kinds of articles and ideas. Um, so the editor uh that I work most often with is Helen Beastro and she's been fantastic. Shout out to Helen. But yeah, so I wrote an article about the Cures Act. It was called the bestkept secret. Uh, I also made a video and um and also I wrote the chapter on

00:51:15

the cures act which is part of that ASP certification workshop that I mentioned because they felt like I was sort of the expert on it. I did a deep dive on the act and all of the reports to Congress and so on and so forth. So what is it? The 21st Century Cures Act was signed into law actually back in 2016, but it was significantly updated December 2020. Its primary purpose with the update is to make health data accessible to patients through electronic formats, smartphones, patient portals, and the like. And embedded in

00:51:52

that adjustment in 2020, deep within it is the requirement to release clinical data, test results, pathology reports, visit notes in near real time. And that means uh everything from your lab tests, imaging and pathology reports, they must be made available electronically and free of charge. The law is on your side. I want everybody to know that. And according to the ONC report to Congress, this is only the beginning. Patient access to electronic health information is on a continuum and the trend will

00:52:29

grow and already has since 2020. Um, what does it look like in real terms? So you may see your results posted on your portal within minutes of a pathologist signing the report. Sometimes or many times before your doctor has even had a chance to to call you. And uh you no longer have to submit for uh formal uh request medical records and wait weeks. I found this interesting. There was a study of 8,000 patients at four health institutions and what they found was that 95.7% want to continue to receive the

00:53:11

immediate release of their results even if it meant seeing them before the provider. And that uh percentage held at 95.3% just slightly lower when patients were asked if uh it showed abnormal results. They still wanted to see it. Patients want access. That's clear. But that same study found patients with abnormal results were almost twice as likely to experience anxiety, of course. And 57% of them went searching online for answers. And Dr. Sites from the study found that patients actually expected contact from

00:53:55

their care team within six hours of seeing an abnormal result. That's a bar that's very difficult to consistently meet. I saw this law uh work firsthand when my husband Bill ended up in the ER during a very busy time. And after hours of waiting on test results before he could be released, I went out and checked his portal and found that all his results were already there and that what he was suffering from was a kidney stone. So I went out to the nurse's station and I told her, "Hey, the

00:54:30

reports are already out there. Can the doctor release him?" And I mentioned the cures act and she had no idea what I was talking about and she said, "No, they're still waiting." and I showed her the portal, you know, and I showed her the the uh the test results. Uh so, one conversation, one smartphone in the law, he was released. But I've also lived the other side. When a genetic test for a family member was posted to the portal before the neurologist could reach us, I turned to chat GPT to make sense of what

00:55:01

we were reading. And what came back was just as confusing and anxiety producing as the report itself. So, this is a cautionary tale. You know, AI tools are are everywhere and patients are using them to fill the gaps. But AI can generate hallucinations. We've all heard about that. And it can look author uh authoritative but not be accurate. You know, it cannot read your face. It cannot recognize your fear or know what matters most to you. Uh when the cures act unblocking role was first imp implemented in 2021,

00:55:41

some practices responded with anxiety. Others rose to the opportunity. Some institutions added disclaimers or links to reliable resources and those are steps in the right direction but they remain uncommon and not enough on their own. This is exactly why pathology clinic model matters. When a report arrives in a portal, before anyone calls, there's no one to explain what the words mean. The pathology clinic fills that gap. And the Cures Act gets information into the patient's hands, but the pathology clinic helps them

00:56:17

understand what it means. As a pathologist that I've come to know and really like, her name is Ann Buckley at Duke. She's a neuropathologist. She put it this way. We cannot leave patients stranded in front of a screen with no one to explain what they're reading. And you know what? Nearly half of Americans feel the health care system isn't compassionate. And studies show physicians miss 60 to 90% of opportunities to respond with compassion, even as research links compassion care, compassionate care to

00:56:56

better outcomes. So the cures act creates the opportunity pathologists must step into not into it not just as d diagnosticians but as human beings who understand what it means to receive difficult news alone. And for your listeners you have more rights than you realize. Start by asking. If you look at your results, try not to uh to do it somewhere safe with someone beside you because information is power but context is everything. >> Very much very much. And before you mentioned um that the pathology clinics

00:57:39

are or or the program and they are run in a way to meet the patients where they are. So you know the first uh thought is like okay a patient who does not have medical background then you're going to be explaining it in a certain way you're going to be looking for you know signs of overwhelm but then you have the other extreme and we before the episode we mentioned okay several pathologists who are also patients that's a different type of patients that you need to meet where they are because they're going to

00:58:11

have equally like bad non-compassionate experience if you start meeting them like talking to them in a patronizing way or like basically not meeting them where they are. So, so that is the skill that the doctor, the pathologist needs to have as well. Like you said, it's not supposed to be a lecture. It's supposed to be a conversation. You're going to have a different conversation with somebody with a law law background than with a medical or healthcare background, right? And I experienced that in a not

00:58:42

fantastic way when um I had a brief period of I I'm not going to say taking care of my mom because the medical team was taking care of her. She was in a coma, but I wanted to know a lot of things. I would go to the literature. I'm a PhD scientist, veterary pathologist, right? So at some point I received a phone call that uh all these questions are very much annoying the care team and what am I trying to interfere with treatment and they basically told me to shut up. So I was very much not met where I was that was

00:59:19

my not fantastic experience with the other uh side of the spectrum. So I that's why I think this is this this phrase meeting the patient where they are >> um is super important. Going back more to the practical side of things, when the trailblazer who had a biopsy is ready to ask for their images but feels intimidated because that is often the feeling that you have when you go to the doctor's office like you cited I don't know 60% of patients uh think that uh there is not enough compassion in in the

00:59:56

healthare system right so obviously you come and you feel uh often feel intimidated what simple respectful wording do you recommend to use whether they're talking to pathology medical records their oncologist so they can say I want to see my slides in a way that works and doesn't require uh them to like I don't know I'm going to keep using the analogy of banging at the door that doesn't want to open >> well Alec I love this question because it gets to something real and many

01:00:27

patients know they want something but they don't know how to ask without feeling feeling like they're being difficult. I want to tell every patient out there, you are not being difficult. You are advocating for yourself and that is your right. Here's language that tends to work to your oncologist or treating physician. How about something like, I'd like to better understand my pathology. Is there a way I could meet with my pathologist to review my slides? That framing better understanding is

01:01:02

non-threatening and collaborative. It invites your doctor into the conversation rather than around it. And to the pathology department directly, I'm a patient in your system and I'm interested in scheduling a pathology clinic visit if your department offers that to review my slides with the pathologists. I'd like to meet with you to get an understanding of the findings in my pathology report and any associated digital image. You know, referencing your rights matters. It signals that you

01:01:37

know the law supports you. You don't have to be aggressive about it. Simply naming your rights calmly and clearly often changes the dynamic entirely. And and one thing I'd like to add is that if you're someone who finds it hard to look at test results when they come in, that is completely valid. Reviewing your information is not for everyone. If you choose to look, try to do it in a calm moment. Read it, absorb it, take a breath, write down questions, and come back to it. You might also ask your

01:02:11

ordering physician ahead of time, you know, for how soon do you do you expect to get the results and when will they be made available and when could I expect to hear from you? And that's one question maybe can save someone a great deal of anxiety. >> Yes. >> And I think >> Yeah. Go ahead. I think you were also talking about you know patients may not understand it don't have time. >> Yes. Yes. Because that's the push back that uh that I see mostly you know in LinkedIn comments whenever I try to

01:02:50

approach the subjects that patients won't understand pathologists don't have time. H that this is not reimbursed. That's another one that the patient is going to be overwhelmed. Um, so yeah, what would you say to both the patients who are afraid to look like you mentioned and the pathologists who are afraid to open the door to these conversations? >> Well, you know, I I too have heard every version of the resistance on both sides and I understand it. Let me speak to each. Um, >> to the patients who are afraid to look,

01:03:23

I hear you. >> Fear of what you might see is real, but I want to offer you a different frame. What I found and what I hear from patients again is that seeing is less frightening than not knowing. The unknown feeds anxiety and clarity even when it's hard gives you something to work with. You don't have to look alone. That a pathology clinic happens with a physician in a room where the entire purpose is to guide you, explain what you're seeing, and answer your questions. and you set

01:03:59

the pace. These conversations are patient led. If you get push back when requesting slides or a clinic visit, stay calm, stay curious, stay professional. Ask, "Can you help me understand what the process is?" Most of the time, resistance comes from unfamiliarity with the requests. They just don't get them. >> Not from an intent to block you. And to the pathologists who are hesitant, I deeply respect the weight of your work. I know that time is scarce. Reimbursement is complicated and you

01:04:37

worry about causing distress, but here's what I've learned from years of sitting at the table with pathologists. Most pathologists behind those microscopes don't know much about the patients they serve. And most patients behind that slide don't know how critical pathologists are in their cancer journey. When a pathologist takes the time to meet with a patient, the patient does not leave overwhelmed. They feel empowered. Patients know they want something. They just don't know how to ask. But it's

01:05:09

your right. People respond well when they feel like a partner rather than a gatekeeper. And if you need support, bring someone with you. You don't have to do this alone. You have uh you have another set of ears, someone who can help you remember what was said and how to follow up. And for the pathologist, the practical how to time scheduling, documentation, and billing. Now, I know for pathologists, these questions, they follow every conversation I've ever had. >> How do I find the time? How does it get

01:05:46

scheduled? How do I document it? and critically how does it get immersed and I want to address these directly because the answers already exist other pathologists are already doing this work and they figured it out time the most common concern I hear from pathologists is I >> so there are trailblazers there >> yes go ahead go ahead >> yeah that there are already trailblazers that we can follow yes So time the most common concern I hear from pathologists is I simply don't have the time.

01:06:22

>> Well here's what pioneers of this movement have found in practice. Most uh pathology clinic visits run about 30 minutes. >> That is the standard encounter length used by pathologists currently conducting these clinics. Virtual pathology clinics are a gamecher for time efficiency. During the pandemic, the country pivoted to teleaalth almost overnight. A virtual patient pathology consultation can be conducted without leaving the lab, without parking logistics, and often offer greater flexibility for both

01:07:00

parties. Maybe your patient is sick. They don't want to ride into the facility. This allows them to review their slides with family members in the comfort of their home. It just makes sense and is a timesaver. Residents and fellows can assist with the initial consultation. One model that has been explored involves a resident or fellow conducting the first part of the visit with a predetermined sort of script to gauge the patients understanding and goals. Then the attending pathologist can join

01:07:35

for any additional questions. the resident or fellow can prepare the note in the EHR which saves the attending time. You know, here's a real novel too tool again within the pathologist. >> It was a article I read about pathology messaging pathology messaging pool. It's another creative way for managing time. So what this was, three uh pathologists got together and they were uh they rotated, took turns answering questions. I believe they were sent through the patient portal and the pool is monitored

01:08:15

by I think up to five pathologists on a weekly rotation. Pathologists who uh have implemented this have said it it is not adding significant burden and patient response has been overwhelmingly positive. Here's another idea. Some institutions are exploring pathology navigator model, a designated role within the pathology department to interface with patients and coordinate the care, which frees up other department resources and allows interested pathologists to opt out without redefining their traditional

01:08:51

role for everyone. Okay. Scheduling. The scheduling pro process has been mapped out clearly by those already running successful clinics. Here's what happens. A referring provider, the treating physician, some other clinician can place an order or referral to initiate the appointment. Sometimes referred to as an RAF 532 ambulatory referral to pathology for review with a patient. Boy, that was a long one. um but there it's being used at institutions. Alternatively, the patient can contact the pathology department's

01:09:28

administrative staff to directly schedule the appointment and then scheduling including cancellations and rescheduling is is managed by the administrative staff. The appointment should be held in a secure and confidential space as I mentioned earlier if it's being done on site with a microscope and a screen to display the digitized slides. If possible, it would be great if the check-in area would be located near uh where the the referring uh clinic is. Then automation has already happened through Epic and My

01:10:03

Chart. is already a reality at many institutions including where Legisia works at Tus Medical Center. It's a streamlined workflow developed in collaboration with Epic developers. So what happens there is the administrative staff or the pathologist can schedule the appointment with just a few clicks. They select the patient. They pick the appropriate pathologist from a pathology resource list and the system autogenerates the scheduling and prepopulates a template. It's a no. In the future, as patient care teams expand

01:10:41

within the portals, patients may be able to self-ch through my chart, choosing directly from the pathologist named in their report. The patient receives instructions on where to park and navigate, you know, and so on and so forth. On the day of the appointment, any applicable co-pay, which may be is collected at the front desk. Documentation, and this is key, documentation does not have to be a burden. At TUS, they've streamlined this whole process. Within Epic, a sample note, which they call a smart note, was

01:11:17

developed with boilerplate in it. It's pre-built for the pathologist. The pathologist opens the patient chart, inserts it, inserts into the smart note, and customize all the wild card text that's in there. That creates the appropriate pathology consult note required for building. Once the visit is complete, then the pathologist inputs the appropriate diagnosis, determines the level of service, whether it was a half hour, 45 minutes, selects the appropriate CPT code using a click of a button, and signs the note. The

01:11:56

documentation billing is already done. Following the encounter, a note should be sent to the referring physician, and a follow-up survey, as I mentioned, should be provided. If residents or fellows have assisted, they can prepare the note in the EHR summarizing what went on. Now, the big one, billing and reimbursement. Reimbursement is one of the most common concerns I hear. And the good news is there is clear billing structure. It already exists. It's already being used. Pathologists are being paid for their

01:12:33

time. Here is what pathologists who are currently conducting clinic visits have worked out. The most common CPT code is for uh 30 to 44 minutes for uh a new patient and that's CPT code 99203. This code is used most frequently by those pathologists who are already doing these these clinic visits. Um, there are additional codes depending on the time you spend that can be used and are payable. You know, could AI help address time pressures and potentially improve productivity and the diagnostic

01:13:11

reassurance for patients? You know, pathologists at Duke Health are already exploring AI integration in that direction. If pathology clinic programs become established, health care institutions may need to designate recognized clinic days on the pathology department calendars just as they do for any other MD in their health system. Pathologists are MDs. >> This could actually redefine and elevate the pathologist's role in a meaningful way. The bottom line is this. As we said earlier, the infrastructure exists, the

01:13:50

billing codes exist, the scheduling workflows exist, the document template uh templates exist, pathologists around the country are already doing this work successfully, sustainably and with profound impact on their patients. The question is no longer is it possible. The question is how do we make this standard? >> I love this. I love this. Um also in the context of because digital pathology as as a let's call it the branch of pathology is often accused of oh there's no reimbursement for this and here we

01:14:31

mention tea health AI. So the AI that I have encountered here in my rural Pennsylvania healthcare system is the ambient scribe where you just have a conversation with your provider and it fills the note automatically. So that's another tool that could streamline that. But like the digital pathology setup also another accusation accusation but but that's what it is. These this is the push back like oh it costs so much money. For this version of telepathology, digital pathology, you don't need anything else than a

01:15:04

microscope camera that you can connect to whatever you know teleaalth system you use for for your telealth visits, right? So this barrier in this particular case for me is non-existent because the cost of this is negligible and the scalability is so much greater than okay I can imagine that like setting up a dedicated space and all that logistics but you can do it virtually. >> Yeah. And there's no like what's the push back on that if you want to you don't need physical space you can very

01:15:40

much leverage pixels for that with a static image if you but but yeah with a camera on the microscope. >> Yeah. >> Um I think like >> in Michigan medicine as I mentioned the breast pathology clinic Dr. Ali uh Ellie Femi um is successfully doing it since 2023. She now has virtual days uh a couple days a week and in visit you know in clinic visit as well and they've helped just since 2023 over 250 breast cancer patients that's pretty significant in a very short time so I it

01:16:19

can be done it can be done efficiently and again why can't you have clinic hours why it's just get paid for it as a physician. >> And you will get paid for it as a physician. Yes, absolutely. >> Totally. So, if someone finishes this episode feeling moved but not yet sure where to start, what is the one concrete step you would like them to take this week toward seeing their own images? And also what's your vision of what cancer care will look like in pathology clinics and image-based conversation become the

01:16:57

norm rather than the exception. It's like two two questions in one. I tend to do that but uh yeah the first one like okay what's the one step this week and second let's give the the vision of yours for this. The one step I I would share with every listener is to take this, you know, this week is to look at your path report. If you had a biopsy, a surgery, a cancer diagnosis, take a look, read it, bring it to your next appointment, ask your doctor to explain any terms you don't understand. That's

01:17:32

the first step towards being an informed, empowered participant in your own care. And if and if you feel ready, take it one step further. Ask your treating team, is there a pathology clinic at this institution where I could meet with a pathologist to review my slides? You may be surprised at the answer. You know, the ASCP toolkit is catching on all across the country, as I mentioned, and they're becoming standard of care. I mentioned Michigan Medicine and TUS Medical and Duke and UCLA and UC

01:18:07

Davis. They're popping up in Mayo Clinic both in Florida and Rochester, you know, and they're popping up and and thanks to virtual visits, as you mentioned, geography is no longer a barrier. There are also trusted resources. I want to point out uh to the to the listeners again, my pathology report.ca CA is a wonderful tool with all vetted information written by pathologists examined by patients like myself. I'm one of eight patient advocates who've been working for years on the My

01:18:46

Pathology Report CA website before anything is posted. The patient advocates review it for patientfriendly terminology. It's plain language and there's even a spot on the uh my pathology.ca website where you can ask a question. Just a little plug for them. Uh you should have Jason Wasserman on your podcast. He built this thing. He hasn't taken a dime for it. He refuses to let advertisers make any money off of his site. He has uh I think he said it went up in 2016. I believe he's had over six

01:19:27

million hits from around the world, Africa, South America, Asia, Europe. These are places where they don't have pathologists, right? They maybe have one for a geographical area. >> Yes. >> Many of which from these places where they don't have access to pathology, >> they'll place they'll copy and paste their whole pathology report right in there. So it's a wonderful site. Also the American Cancer Society reach uh to recovery app is available for breast cancer patients. reach.cancer.org.

01:20:04

You can connect with uh breast cancer patient volunteers like myself instantly. >> Remains the gold standard for re reliable health information. >> Um >> I'm going to put all these links in the show notes so that can just copy and click on them. >> Wonderful. I want to, you know, and you asked about my vision. >> Um, I want pathology to again move from the doctor's doctor to truly being the patient's doctor. And the tools to make that happen are already emerging. I

01:20:37

think about what is uh what it would have meant to me to have the conversation at the time of my diagnosis rather than 10 years later. the clarity, the understanding, the ability to make informed decisions about my own body. >> You know, here's something that excites me deeply right now. It's something called Scanslated. And this is what Duke is doing and Mayo Clinic is also doing. Scansed is an app that was written by uh Dr. uh Nick Bera at Nuke uh at Duke and originally written for radiology reports.

01:21:18

>> He partnered with Jason Wasserman from the my pathology report.ca CA website and used Jason's uh bed of information, his LLM if you will, vetted trusted information and diagrams and digital pathology that he has annotated as the bed for a new module specific for pathology reports. Duke, like I said, has been using it since it was released in the fall of last year. And Mayo in Arizona has been uh piloting it as well. And what that it's so revolutionary and wonderful. What happens is the patient

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goes right into their my chart, their own portal. They click on a link that says uh yes, I'd like to see the patient friendly pathology report and they hover over words uh in their pathology report and instantly pops up a diagram, a digital image, a plain language narrative from Jason Werman's bed of information. It's patient friendly terms right there at their fingertips. And I hope this sort of patientfriendly path report content will augment and extend p the pathology clinic process reaching

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patients who may never get that formal clinic visits but who still deserve to understand their disease. Ultimately, Alec, here's my big vision. I like to think big. Imagine if the pathologist became a true member of your care team. that you could message them directly through your portal, request a meeting with the very pathologists who diagnosed your disease, follow up with them after the encounter, and weave AI into that entire process so that your understanding of your disease is completely democratized, available to

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you at any hour, in any language, you can actually use it. This is the nothing about me without me philosophy fully realized not a slogan a system. The beautiful thing is all of these tools exist in various forms right now. The pathology clinic, the patient friendly path reports, the portal technology, AI, we don't have to wait for some distant future. We have the will, if we have the will to bring it all together. I hold no formal power, but I do have a voice and I will keep using it until every patient

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can see and every pathologist remembers the life behind that slide. But together, we can shape the future of patient centered care. And I want to thank you so much for the opportunity to share with your readers my thoughts and ideas. And I hope you will share my contact information um when it's posted and my >> YouTube your website all the resources that we mentioned totally in the show notes. >> Thank you so so much for allowing me to be here today, Alec. It was my pleasure and being so gracious with your time.

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>> It was amazing. Super powerful. The other perspective that is the perspective of the majority because pathologists are the minority. You have shortage of them. You have countries where you have like one for I don't know how many million people or like I don't know in Poland it's like 300 for 38 million people. But the patients as part of the care team like you said that's not optional anymore. That is their reality. And if any of you trailblazers listening to this today think that this

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episode can help someone, help you, someone you know that is in a situation that a pathology clinic, seeing their image would help them. Please copy the link to wherever you're listening or watching right now and send it to them. Thank you so much for joining me and thank you so much, Michelle, and I talk to you in the next episode. >> Sounds great. Thank you again.