Jill Wruble on “incidentalomas”

I met Jill when she was working on this at a Mark Twain House writing course I taught. It was awesome to see her progress, and I’m thrilled with what she did with this. Go, Jill!

Published by datingjesus

Just another one of God's children.

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  1. Correct me if I’m wrong…but…she’s talking to healthcare professionals…right?

    1. It’s a TED talk, and I don’t know that it was strictly just professionals there.

  2. Very good! What I would like to see happen, is watchful waiting after better intelligence (via more sophisticated cognitive analytics) says watchful waiting is advised. The bottom line is, the patient has the final say and so the patient needs better assurances that there isn’t a problem. More often than not, the best a doctor can do is mention odds. That doesn’t sit well with a lot of people. There is a huge opportunity to utilize more sophisticated cognitive analytics to make sense of the vast amounts of data that can be collected, especially with diagnostic imaging. It’s used to some degree already. As more detailed information is collected on an individual and more collected on populations, cognitive computing should be able to better analyze a particular abnormality, diagnose with more certainty, and advise proper treatment if required. This is an exciting area and I think we’ll see much progress within the next decade. No treatment, when there is a problem has risks. People tend to forget, treatment whether needed or not, also has risks.

    1. Perspective on the overutilization narrative from Don McCanne’s PNHP blog here and here.

      “We have a much greater problem with health care underutilization and its adverse consequences [amenable mortality] which are compounded by policies designed to curtail utilization.”

      For almost 50 years, the healthcare profession has drilled into our brains the overarching necessity of early detection and treatment when battling cancers. Now that the costs of diagnostic procedures and treatments are so completely out of control they’re pinching the bottom line of insurance companies…now that the quality of care available from some sectors of our healthcare system has dropped to such abysmal levels that treatment can be as dangerous as disease…insurance companies and healthcare professionals alike are seeking a way out…a way to escape accountability by transferring the risks associated with diagnostics and treatment into the laps of patients who are completely and utterly dependent on them for what limited amount of meaningful participation in the decision making process they are granted in our healthcare system.

      I’m sure that someday…hopefully before “smart” computers become overutilized…we’ll have more than anecdotal evidence to employ in “establishing precise guidelines that can be applied reliably to complex clinical settings.” Until then, patients…especially those lacking the financial resources necessary when going out of network and completely out of pocket…will remain at the mercy of a system more concerned with capital than patient outcomes.

      1. “transferring the risks associated with diagnostics and treatment into the laps of patients who are completely and utterly dependent on them for what limited amount of meaningful participation in the decision making process they are granted”

        Yes! I have seen this as a huge problem. A lot of patients in this position are elderly, overwhelmed, and not medically astute enough to evaluate their options. I have seen this close up. As medical technology collects more information and data on a person’s condition or tumor, there needs to be more sophisticated analysis of that data, and knowledge of which attributes match past cases,treatments and their outcomes. This is where cognitive computing could help.

        The thyroid nodule case hits close to home for me, too. I am in a watch & wait position with 2 large nodules. I get regular ultrasounds and occasional biopsies with significant enlargement. At the rate they are growing, I may need that half with the nodules removed, even if not cancerous, due to their size alone. Compression on neck vessels and trachea is not a good thing either. And there is discomfort with it. It’s frustrating that they can’t remove the nodule – they have to take the thyroid, too. Unless cancer is found or I pass out from compression, I am in charge of if and when it should be removed. And biopsy is imperfect with a large nodule which could be partly cancerous and partly benign. Think of blindly sticking a needle into a piece of fruit and hoping to get the rotting spot. There should be a better way of evaluating these nodules and a less extreme way (precise laser surgery to remove only the nodules) of treating these things. That is my personal frustration. But it does highlight the limited extreme options. There should be something between “do nothing” and “cut out the thyroid”.

        I think you make a good point, leftover. There are cases of under-utilization, even if there are cases of over-utilization out there. On the one hand, it makes sense to let a patient be in charge of what happens to their own body, but on the other hand, choices are best made when reliable, more precise evaluation and guidelines are established – and with outcomes rather than cost being a factor, as you said.

        1. The consequence of underutilization…amenable mortality…is well documented in the public record. Has been for decades. In the United States, between twenty and forty thousand people…depending on who is stacking the bodies…die every year…every year…because they lacked access to timely and appropriate healthcare. That includes a significant numbers of people with health insurance.

          That’s shameful, in my opinion, and illustrates a much more serious problem in our healthcare system than what is found in overutilization narratives.

          I wish you the best of luck with your situation. You’re lucky to have the resources necessary to get the information you need to make an informed decision. You’re also lucky to have a working knowledge of what’s going on which allows you to judge risk and consequence on a rational level. That puts you in a rather elite group.

          1. Thanks. It’s frustrating because there is no treatment for enlarging thyroid nodules. Evaluation and treatment haven’t evolved enough to give a person options, other than wait or surgical removal. Seems extreme to me. In any case, yes I’m lucky to have insurance coverage and some ability to evaluate. However, with limited diagnostic info & options, it doesn’t seem to be enough. I’m fine though so far so no worries.

            I do like what the speaker said though. Treatment isn’t always appropriate and it also carries risks. However, Leftover, I hear your concern, that with acknowledgement of over utilization of medical care it could make it more difficult for those who don’t have access to enough good quality healthcare. There are problems with each. They both carry risks to good outcomes. Certainly removal of a tumor, requiring surgery, putting a person at risk of complication and infection, for something harmless and benign, is not a good idea either. Maybe the language needs to change, with the goal being appropriate medical intervention with high yield excellent outcomes. If the goal is simply that, then the money is not involved in the evaluation as much, I’m thinking.

            1. I agree the narrative needs to change. Can that happen in a system that prioritizes profit over patient outcomes?

              We need to do all that we can to change the dialogue on reform. Instead of imperiling our health care system with misguided policies to haphazardly reduce utilization, we need to advance policies that would make health care truly universal, comprehensive, equitable, accessible, and priced appropriately, while increasing efficiencies through policies that would actually be effective in recovering waste – the prime example being the replacement of our expensive, fragmented system of financing care with an efficient single payer national health program.

              See PNHP FAQ.
              In addition, “establish a [national] system for future cost control using proven-effective methods such as negotiated fees, global budgets, and capital planning” (Friedman) that incentivizes the healthcare profession to concentrate on overall quality.

  3. This incidentalomas thing is a HUGE problem generally, but particularly regarding prostate cancer. I spent some time working at a medical research foundation and rubbing elbows with medical researchers. The incidence of cancer, particularly in the elderly, is huge, but much of it is just an indolent condition, not an aggressive or fatal thing. Many researchers told me that most elderly men die with prostate cancer, but very few die BECAUSE of prostate cancer. Usually it’s more of a normal condition, like wrinkled skin. Now, the death rate (and certainly the treatment side effects) from aggressive treatment of prostate cancer are far, far from trivial. I’m not going into the details here, but what Wruble is talking about is a huge deal. Often getting yourself into the meat-grinder of the medical profession can have very poor results compared to doing nothing but watching.

    1. She certainly got my attention. I’d never even heard of this before I heard her talking about it.

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