Daniel Joyce: Hi, my name's Dan Joyce. I'm a urologic oncologist at Vanderbilt University Medical Center. I am extremely excited and honored to be joined by David Dranove, who is a distinguished Professor of Health Industry Management at Northwestern University's Kellogg School of Management, where he's also the Professor of Strategy and Director of Doctoral Programs.

He has published extensively in Healthcare Economics as well as published several books, and recently published an article in Health Affairs where he described his own experience with cancer, specifically bladder cancer. And I'm just really honored to talk to you today, Dr. Dranove, about your experience and your unique perspective as somebody who understands the economical side of healthcare.

David Dranove: Well, it's a pleasure to be here today and I look forward to speaking to an audience I don't normally get a chance to reach out to.

Daniel Joyce: So can you start just for those who may not be familiar with your work, what your interests are in healthcare economics, and some of the work you've done previously and things you've published?

David Dranove: Sure. I've largely published in two different areas. One is in what I call healthcare markets or the business side of healthcare; how healthcare providers compete with one another, how insurers compete with one another, and how insurers and providers come together to create networks and reach out to consumers. The other large branch of my research is on what economists call quality disclosure. What healthcare providers will be familiar with are quality ratings. The Medicare star ratings for hospitals would be a good example.

Daniel Joyce: So you're uniquely fitted to approach care in the healthcare setting, to receive care, to understand how to assess value of the care you're receiving, but I think you were probably not prepared for the diagnosis you got and what followed after that. So I'll leave this as a pretty open-ended question. I encourage anyone watching this to please read the article. Your diary entries of your experience with non-muscle invasive bladder cancer are really helpful and insightful. But tell us a little bit about your cancer journey and what you learned along the way.

David Dranove: Sure. Just as background, about 12 years ago, I discovered that I was positive for the BRCA1 mutation. And this unfortunately was after my brother passed away from cancer and they did a blood test on him. So I have been very aware of my high risk for cancer for a long time, and so I've been regularly seeing all kinds of specialists in lots of different areas and they've been taking good care of me.

That said, when about two and a half years ago and I was playing vigorously with my grandson, and I discovered shortly thereafter I had blood in my urine, I didn't think it was anything big. I did what all good ignorant patients do these days, which is I went online and I self-diagnosed, and I determined that because I have a big prostate, this must have been some prostate irritation. And besides, I had an appointment with my urologist scheduled for just a month later and I figured he could tell me what was going on.

Unfortunately, what was going on wasn't just an irritated bladder, it was about a two centimeter tumor on my bladder. And at that moment my life changed and it became a whirlwind.

Daniel Joyce: I think that's a very fitting description of what it must feel like to get a cancer diagnosis. And that's one thing in my work and talking about financial toxicity with patients and the cost of care, having any meaningful conversation when you're hit with that news is really, really challenging.

Did you find that you had that same experience, that it was hard to really grasp what was even being discussed in your clinic visits early on?

David Dranove: My doctor was very clear and I did a lot of research. One advantage I have as an academic is that I could read academic papers in any field and make my way through the statistics pretty well. So I spent a lot of time doing my own research this time, better research now that I knew what I was facing, getting a lot of good information from my doctor. But my main experience during those first few days was just, "Do whatever it is you have to do. Just get through this."

So I was immediately told to get a CAT scan, so I scheduled a CAT scan. In the 12 or 24 hours between when I was told to get a CAT scan and I went in for the CAT scan, my insurance company called me to try to persuade me to get the CAT scan done somewhere else in order to save some money. This is the last thing I wanted to think about.

And that's something that economists often fail to understand when we're doing our research, but I think deep down we know it's true, is that most patients don't want to worry about the financial side of things when their doctor says, "Do this." They just want to do it. And besides, my insurance was reasonably generous and I wasn't going to save very much money by shopping around anyway.

So that's the first thing. The next thing he says is, "We're going to come in and we're going to do a cystoscopy." And that was like 24 hours later. And after the cystoscopy, he says, "We're going to go in and do a TURBT, and we're going to do that like two days later." And I was like, "Okay, just do all this."

I rather foolishly thought that once they removed the tumor, I was done. And so the biggest shock came not when all of this happened, because I said, "Okay, hopefully I caught it early enough that waiting a month didn't kill me." What I thought would happen was they'd remove the tumor and I'd be cured. And when my doctor said, "No, no, no, bladder cancer tends to recur," and then he told me it was stage one, but it was aggressive, then I looked at the research literature and I suddenly realized that if I'm the typical patient, I might not be around five years from now to play with my grandchildren. And even if I am, I might have to lose my bladder and life could stink.

Daniel Joyce: Hmm.

David Dranove: All that happened in such a short span of time, I didn't really have time to think about much of the finances.

Daniel Joyce: Yeah, it's a really interesting kind of development of how you process things. You know, early on, I see that in my patients. They come in and they're like, "I don't care about anything. Let's just get it taken care of. Let's get on with it. I want to deal with it and then move on." And then as you start to realize that cancer is something that's not just a one and done. It is, whether you're cured or not, is something you live with lifelong.

And I know you wrote about in the article at some point you had this thought process of, "Well, is the urologist I'm seeing good?" And when we talk about value in healthcare, we're talking about that quality over cost. Luckily for you, it sounds like the cost side of things, at least from an out-of-pocket component, wasn't a huge factor, and so therefore the quality was really what you wanted to see.

Can you talk a little bit about that thought process and what you did to kind of appease your feelings about whether you were receiving high quality care?

David Dranove: Sure. Well, I guess it all starts when you choose your specialist, right? I'm often reminded of the humorist Garrison Keillor. Garrison Keillor wrote about the fictional town of Lake Wobegon where I believe he said, "The men are strong, the women are handsome, and all of the children are above average." Well, I think most of us believe that our doctors are above average, which statistically of course is impossible. So we look for clues to, "Maybe our doctor really is a good doctor."
The first clue I have is that I've had my primary care physician for 30 years or more, and he has ... He's not in a healthcare system, he's an independent doctor, and he can refer patients to any doctor in any system and everybody seems to know it. And he's referred me to doctors who normally have closed practices and I can get into their practice. So there's something about his referrals that make me feel comfortable.

The urologist he referred me to has a crowded office. At his website, he mentions that he has many doctors in his practice. And I've spoken to two or three of his patients while sitting in the waiting room, and that seems to be true. And he's very good at telling me what's going on. Very clear. All of these are very, very good signs. But at the end of the day, how do I know that he's making the right diagnostic call? How do I know that he's making the right treatment recommendation? Well, I really don't.

Let me give you an example. I knew from reading at the Inspire Bladder Network; I'm sure some of your listeners are familiar with that. It's a support group of bladder cancer patients online; that many patients, as soon as they got their bladder cancer diagnosis, same type of situation as mine; say 1A, so it's aggressive, stage one; they considered having their bladder removed. They opted for the Deion Sanders treatment, I understand, Coach Prime. Probably in the same situation as I was in, because if it was more advanced, there wouldn't have been a question. If it was stage zero, they wouldn't have done it. So probably the same situation, opted to have his bladder removed. And my doctor told me, "Some doctors will recommend that you have your bladder removed, but I don't recommend that."

How do I know which doctor's making the right recommendation?

As it's turned out, and maybe we'll cut to the chase for those who don't want to read the article, I'm doing great. It's been two and a half years and I've been cancer free for two years, and I think I'm at the turning point now where this becomes something to monitor rather than something to worry about. I'm hoping I'm almost there. But how do I know? I don't know how I know. The data's not out there and I'm not sure there's much hope for it being out there for somebody who's looking for it.

Daniel Joyce: Yeah, and you touched on an important aspect of decision-making too, in that you could have had an intramuscular treatment, BCG, but with that same disease, sometimes we do recommend what we call timely cystectomy. So taking out the bladder when it's risky to help avoid any of the really catastrophic things downstream from the cancer.

Now those are two very, very different treatments. They both affect your quality of life very differently. And how do you convey to a patient the quality of life trade-offs and the survival trade-offs with each of those treatment options in a short 15-minute clinic visit?

You talked a little bit about that in the article. Can you share with me some of your thoughts on how we might be able to do that better?

David Dranove: Sure.

So I was very interested in getting a second opinion. I wanted to understand the quality of life trade-offs because I knew those were different choices. And so I reached out to a prominent physician at a major teaching hospital in the Chicago area, and he was willing to chat with me. We did a video conversation. And he told me that his patients did very well, that within a year of having their bladder removed, as we were talking about the bladder removal option, most of them had returned to a quality of life similar to what they had beforehand.

Now, I did research online that said that that wasn't always the case, that there were a lot ... That on average, you don't expect to return to the same quality of life. For the listeners who are familiar with quality adjusted life years, I think you lose like two tenths to a quarter of a quality after bladder removal. I'm worried about things like, "Could I get on an airplane to visit my children and my grandchildren who live out in Hawaii, actually. Would I ever be able to fly out to see them again? Things like that.

He assured me that that would be fine, but my own doctor said that the quality of life would not be the same. And so I had two different views there, and I began to wonder why they had different experiences. So I looked at the number of procedures that were performed at these two facilities. I actually have access to Medicare utilization data as part of my research, so I could see at the facility where my own urologist practices, the volume's not very high; the facility where the academic physician practices has very high volume.

And then I learned how important the nursing care was, the instruction that you get post-surgery to take care of your new appliance, as it were. And that's something that you can't find anywhere. How do I know where I'm getting the best nursing care, the best instruction?

At the end of the day, I trusted my own physician who assured me that he was very confident in his diagnosis, that he had not missed anything, that the cancer had not spread. He took more and more biopsy samples to convince both of us the cancer had not spread and that I should go ahead with the BCG regimen.

Daniel Joyce: A lot to unpack there.

David Dranove: Hmm.

Daniel Joyce: You ran into a lot of the conflicting and varying data on quality of life surrounding cystectomy, neobladders, ileal conduits. The evidence is all over the place.

You also kind of touched on the fact that quality, so quality of just life here, is relying on utility values, which we know when we assess those utility values, there's a skew towards a lot of people rating their life as one even when that may not be the case. So the subjectivity of even assessing a health state utility value is problematic.
Not to mention the fact that a lot of our cost-effectiveness analyses look at utility values from a societal perspective. So these are people that are assessing that life who don't have cancer. And there are instruments that look at the patient perspective side of things too, but we often don't use that in healthcare economics.

So there's a lot there that somehow it'd be great to marry the ability to assess a patient's value of life, marry that with what we know about other patients' experiences, and kind of present to them in a very concise way, which the quality does, but in a way that makes sense to them that can compare treatments for them and help them really understand what life is like after those treatments.

So I think your experience sort of highlights the problem and also some potential solutions to how we could do this.

David Dranove: Yeah. So it's funny you mentioned how your perspective affects your quality rating. I teach quality adjusted life years to my MBA students, many of whom are going into the pharma or just more medical technology sector and they need to understand how to measure the quality of their products. And one of the things I tell them is that, "Your perspective matters."

I ask them, for example, "Who do you think would give a higher quality score on being visually impaired? Somebody who is currently fully sighted or somebody who is visually impaired?" And they all realize it's a trick question, so they all say, "Oh, I guess the people who are visually impaired give it a higher score," which is true. You learn that you could still enjoy life even though you are visually impaired. And they may, as you say, give it a score of one even though nobody really would want that for themselves.

So what do you make of the quality scores? And I have a feeling that, I guess maybe just because it's human nature, that once you overcome an obstacle, even if you left something behind, you still feel great about it.

Daniel Joyce: Yeah. There's still the preciousness of life, and you learn to love it no matter what state it is over time in general.

David Dranove: I think that's right. I learned a lot from my wife's parents, both of whom lived to a ripe old age, and my mom who also lived to a ripe old age, who despite multiple ailments seemed to enjoy life to the fullest. So quality scores are difficult, but we need some way of gauging, say, the relative performance of different doctors.

One of the things I talked about in my diary and then in the article at Health Affairs is how difficult it is to gauge the performance of, say, surgeons who've removed bladders. There is data available on how many cystectomies these doctors have done, but that's about it when it comes to available quality data.

I have seen quality data on urology at various sites. There's a major health insurer that does a very good job of providing quality data to their members on many different specialties and use like 20 different quality markers for urologists. Most of those have to do with prostate health. None of them have to do with bladder.
So what would we like to look at for quality measures for bladder removal? I think it's pretty obvious. It's the quality of life after surgery.

Daniel Joyce: Yeah.

David Dranove: And we actually know how to measure that sort of thing. We just don't do it.

We have to rely on the patients. You're not going to find the answers in medical records in any consistent way, but patient reported outcomes are widely used. I'm very fortunate I work at Northwestern University, where one of the great pioneers in patient reported outcomes is David Cella; did his great work, and I'm a good friend with David. And we've talked about developing patient reported outcome measures for something like bladder cancer.

It's very easy to do, it would be easy to implement, and a patient could look at this and say, "You know, with Dr. X, their patients score 90% on this scale a year after the surgery. And for Dr. Y, they score 80%." Now maybe their patient populations aren't the same. There are always going to be these problems. But I'd rather have that information and try to understand the biases than go into it blind.

Daniel Joyce: I totally agree. There's a lot of complexities to it, obviously, but really what it comes down to is buy-in on transparency; transparency from physicians and their outcomes, transparency from the healthcare systems on costs, and transparency with patients about what to expect. And that comes from patient reported outcome measures, and I couldn't agree more.

Dr. Dranove, I can't thank you enough for spending the time and sharing your experience, taking the time to write and share personal thoughts on your cancer journey. I hope you will continue to keep us posted, and I'm praying and hoping that the cancer stays gone and that this is something that's not an issue for you moving forward.

David Dranove: Oh, you're very, very welcome.