Pathology for the People

Pathology: where morphology, gross anatomy, and microscopy intersect with disease. It’s what initially drew me to the field – an opportunity to actually visualize disease processes with an anatomic frame-of-reference and the evolution of diseases in a physical form. But there’s one aspect that’s often overlooked from a pathologist’s duty – the interface with patients. An error that may be a deficit to patients and pathologists alike.

I’m currently Director of the Division of Pathology Informatics at the University of Michigan, and our department has a long tradition of implementing quality systems into our infrastructure where appropriate. We’ve had a series of successful projects, the first of which involved generating tools that could mine and interface with pathology records. During that venture, we discovered that although critical results had been acted upon, there were many examples in which the right result was reported on the right patients, but there was no evidence that the clinician had either seen the report or acted upon it. Our quality system allowed us to recognize that, in many cases (because clinicians are so busy), there is less time and opportunity for patients to get complete – or even satisfactory – answers to queries about their disease. If we use cancer as an example, we could end up with patients who are not fully apprised of the biological potential of their cancer, what their complete management plan options are, or how they can actively participate in the resolution or cure of their disease. Our quality team felt there was a void that needed to be filled, and that the solution lay with pathologists.

Bringing pathology to the patients

The primary data for most disease diagnostics comes from pathology, and pathologists are often among the most informed about an individual patient’s disease. We thought it would make sense, in some cases, for pathologists to be available to patients for a direct and interactive review of their case. A driving force leading to the creation of this process has been one of my colleagues, Jeffrey Myers, who is Vice Chair of Clinical Affairs and Quality and Professor of Pulmonary Pathology at the University of Michigan. Through his leadership, our department has been able to establish a simplified access model by which patients can easily contact the actual pathologist who reviewed their case to gain additional information and insight into the disease processes at hand.

The structure we have at the University of Michigan is relatively straightforward and informal. A patient uses a telephone or online portal to ask for a meeting with their pathologist. An anatomic pathology coordinator checks the pathologist’s schedule and lets the patient know available times, free of charge. The pathologist is notified and given access to the patient’s slides and reports to re-familiarize themselves. The pathologist and patient (and family members if desired) have access to a multi-headed microscope, with real-time cameras capturing the slides and projecting the images on a screen.

The session is an opportunity for the pathologist to describe what’s on the slide – the anatomic frame-of-reference – and then an opportunity for the patient to ask questions about survival, molecular underpinning of the disease, and so on, which in-turn informs the possible treatment options that are available. Generally, such conversations provide the patient with a much more concrete understanding of their disease than is available from a typical initial encounter with the clinician reading the pathology report. Indeed, patients have told us that the process provides much-needed insight into their disease, which better prepares them for the “battle” ahead. Our reports suggest that when patients are about to embark on treatment, understanding what it is they are battling and being mentally prepared helps them to face what previously would be “the unknown” and the various consequences of treatment.

We’ve been doing this for about three years during which time we have served several hundred patients. We continue to gather anecdotal reports from our patients who participate in this process and it really has all been positive. To my knowledge, no one has complained or stated that the opportunity to meet with their pathologists wasn’t meritorious. Therefore, we continue to offer the service and plan on growing it.

The positive feedback we’ve received hasn’t solely been from patients. Currently, a growing number of institutions – including the Mayo Clinic and the Memorial Sloan Kettering Cancer Center – offer office-hours pathology to patients, and the reception from participating pathologists has been positive.

When Jeff Myers is on the national lecture circuit, he routinely notes that there is continued and enthusiastic interest from other institutions interested in initiating similar programs – which is fantastic. I would encourage as many care providers as possible to offer the service; I believe it should be the standard of practice.

No payday?

You may be wondering, as fellow pathologists have asked us, “How can you afford to do this, if you’re not charging anything?”

The simple “high-level” answer is that it’s not about money at all – it’s about making sure that the patient has received the best possible care for the management of their disease. And especially now that we have operating evidence from running this program, we’re convinced that this value-added service helps patients. We’re doing it because we believe it is part of what should be a comprehensive care program for patients with severe and significant illness.

So far, the value added to the patient far exceeds the pathologists time so it seems to justify the expenditure of that extra effort, making the current model sustainable for us. However, as I mentioned earlier, we plan on expanding the service’s scope, and I can imagine a time in the not-too-distant future when this becomes widespread, with the vast majority of patients wanting to take advantage of the service. When that happens, we may hit a threshold where the amount of pathologist resource required makes the service unsustainable without some type of reimbursement. At that point, we could conceivably petition the US insurance infrastructure to make it a reimbursable activity, as with a clinician’s consultation.

Mutually beneficial

Fellow pathologist Mark Boguski said: “Pathologists are the most important doctors that most patients have never met” (1), and he’s absolutely right. At the moment, pathologists make a monumentally important contribution to the decision-making process for patients, and yet the patient often doesn’t have direct contact with a pathologist, which can result in certain mishaps.

What is not generally appreciated by patients – and even some clinicians – is that reports are not absolute metrics of truth. The reality is that they’re our best approximation of the evidence available. Many diagnoses that we generate are nuanced, and there are complexities and ambiguities, which are best communicated via a conversation – but that unfortunately isn’t current standard practice. And, in fact, it’s not just one conversation – it should be an ongoing dialogue between the pathologist and the clinician, the pathologist and the patient, or maybe the pathologist, clinician, and patient.

We’re getting closer to that ideal; for example, in tumor boards, all the different specialties involved with the comprehensive treatment of a patient are part of the process. Yet I think there’s a blind spot: patients may not always be in attendance at a tumor board, and I think there’s a need for a simplified form that allows the patient to interact with a multidisciplinary team to attain a comprehensive understanding of their illness. Institutes such as MD Anderson, the Memorial Sloan Kettering Cancer Center have long recognized this truth and have very forward-thinking ways of engaging the patient as a participant of their treatment, but unfortunately it is anything but universal.

Going back to Mark’s comment, we must seek areas where pathologists can actively participate in the management of patient care – both in clinically-oriented settings with teams of physicians and providers, but also in settings where the patient and their family might be present. Expanding the pathologist’s role by using direct knowledge of the mechanisms of disease to improve treatment, but also to educate both patients and the clinician can only be beneficial. And a more collaborative process is better for all parties involved.

Overturning irony

Historically, the general consensus has been that pathologists should only communicate with clinicians – and never with patients. There are various states, such as New York, where pathologists are forbidden – by law – from directly talking to patients, which I think is indefensible – and ironic given my call here. Fortunately, I believe that the College of American Pathologists and New York State Society of Pathologists are in the process of attempting to repeal that law. In many ways, the specialty of pathology can, and should, serve in a very direct patient contact role. In a way, pathologists are clinicians that don’t directly treat patients. Any rule that underscores the antiquated thought that pathologists should stay in the basement, read their slides, and not interact with anyone should be very quickly put aside.

Ultimately, the office hours endeavor leads back to my initial point: we, as pathologists, should always seek out additional opportunities to elevate the level of quality that pathology delivers. I believe there a significant number of such opportunities – and offering office hours pathology to patients is an essential step in the right direction.