The road to improving doctor-patient interactions in kidney cancer

Medicom interviewed Dena Battle, president of KCCure [1,2], a US-based, patient-driven, evidence-based advocacy organisation for kidney cancer patients, about patient-doctor interactions in the context of kidney cancer.

Medicom: What's your take on the interactions between doctors and patients and how can we start to improve these in the US?

“Like many people in advocacy, I came into this space after a personal experience. I lost my husband to kidney cancer. He was 45 when he died, and it was a five-year journey. During this process, I had a lot of ideas and thoughts about how we could improve care. One of the doctors challenged me and asked me: ”Why do you think your ideas are true?” I realised that this doctor had a point. I don't know whether other patients feel the same way as my husband did. As advocates, we need to use an evidence-based approach, the same way we expect doctors to use an evidence-based approach.

We started doing surveys within KCCure to try and better gauge the patient journey and patient perceptions. The results showed that there were things that I was wrong about. However, the great thing about being wrong is that it gives you an opportunity to be right. From here, we made sure that everything that we were advocating for was coming directly from patients and had some evidence to back up what we were thinking.

I realised that a lot of things coming from the healthcare provider side suffered similar challenges. Assumptions were made about what patients wanted or what patients were thinking without any supporting evidence. It happens often in patient-provider relationships, where a doctor has one perspective that will influence their thinking, and a patient has a very different perception. This type of discord happens a lot and it's easy for communication to fall off the rails in those moments. It prevents them from coming to shared decision-making, where both sides are aware of the other person's objectives, values, and goals.”

Medicom: How do we break this down and figure out where it goes wrong? How we can improve patient-doctor communication?

“That's a great question. Many healthcare providers come to me and ask me: “What do I do with patients who just don't want information?" My theory is that patients want as much information as a doctor can give them. But in the early moments of a diagnosis, when fear and uncertainty are clouding the judgment process of a person, it's easy for a patient to shut down and say: "I'm going to do whatever you want, and I don't want to think about it."

We don't have a way in the care continuum to consider the time it takes to process a diagnosis. We say: “How much information do you want today in this 15-minute increment appointment that we have?” What we should say is: “How much information do you need to make the best decision in the next three-week period that we have before that decision needs to be made? And how much time do you need to receive, accept, and process that information so you can come to the best decision?”

I also encourage providers to talk with their patients about recurrence. It won't increase their anxiety because their anxiety already exists. Tell them that you have a plan in place in the rare event that the cancer comes back. That is something that patients are looking for. In our latest survey, the majority of patients who had been diagnosed with localised disease and then experienced a recurrence, said that they felt blindsided. Knowing that a third of kidney cancer patients will recur, I find it interesting that so many of them felt blindsided. I think it would be nice for patients to not feel like the rug was pulled out from under them but instead said: "I was hoping that I wouldn’t experience recurrence, but now that we're here, I know the treatment options and I know that this is not an immediate death sentence.”

Medicom: Circling back to the discord; how does that kind of expectation management play into discord between patient and provider communications?

I think this is a perfect example of where discord is happening. Urologists might not want to talk about recurrence, because it would increase the patient’s anxiety. It's right to say “Don't worry”. However, from a patient's perspective, if a doctor says, "Don't worry", it comes across as dishonesty. The patient feels like the doctor is hiding something. This may lead to more anxiety on their part. Importantly, there is some evidence that patients who are distrustful or sceptical of what their doctors told them will turn to sources of misinformation.

Medicom: Could you tell me what the difference is between misinformation and disinformation?

“Misinformation is information that's misconstrued for any reason. Disinformation is misinformation that's given for malicious purposes, intentionally trying to mislead people. Misinformation, which is our bigger problem, is more like "I happened upon something and maybe there's a situational difference or a context difference." The other day on Twitter, a patient had used ChatGPT to ask about their treatment and ChatGPT was giving statistics for metastatic survival versus adjuvant therapy. The patient said: "This is so perfectly explained. I wish my doctor had explained it this way." This is a nuanced form of misinformation and a patient's using that for decision-making. Although the information that ChatGPT gave was not inaccurate, it was given in the wrong context.”

Medicom: Excellent example. But what if a well-informed patient goes to the doctor, ready to enter the shared decision-making discussion to get the best possible outcome? How can this go wrong?

“Let's be honest and realistic; every decision is full of uncertainty. In medicine, we struggle a lot with the concept of uncertainty. In the same vein, every decision that a patient makes, even if some of the foundation of that decision might be based on imperfect information, doesn't necessarily mean that there is poor decision-making at hand. That is something we have to remember. The idea that you could eliminate all misinformation from patients is too lofty of a goal, but you want them to make the best decision for their personal situation. As an advocate, it is my goal to recognise doctor-patient interactions that go wrong.”

Medicom: What are some of the solutions that you've thought about?

“First of all, we can educate people about elements of misinformation that might not be obvious, such as statistical bias. We know that the majority of patients seek out information through crowdsourcing. They're connecting with other people who've had a similar experience. Although it's a smart way to get information, the cognitive bias and statistical bias that can result from that is overwhelming, and it might influence a patient’s decision.

To address this, we created a private community just for patients with stage one, two, or three, and not stage 4 kidney cancer. By assigning patients to the right group, they will obtain a more realistic picture of recurrence. When patients post a familiar reassurance-seeking question, such as "Has anyone in this group recurred?" they get a much more accurate depiction of recurrence than they might have had in a larger group, including metastatic patients.

We also noticed in our stage 1-2-3 group that about 40% of the people coming in were people who didn't have a confirmed diagnosis of kidney cancer. They had been told that they have a mass on a scan and that this might be cancer. We realised that there was another statistical bias. Patients would come in and they would ask: "My doctor said this might be cancer, was your renal mass cancer?” Everyone in the cancer group said: "Yes. Mine was cancer”, creating a confirmation bias. Fortunately, we have a group for people with benign masses. We added patients who had not had a definitive diagnosis, and we opened it up for people who were on active surveillance for a small renal mass. As a consequence, we shifted the crowd that they were sourcing their information from. There are people in that group who did have a cancer diagnosis, but there are also people who had a benign diagnosis. In this way, people can see that it is important to wait for their diagnosis. We call it ‘building wise crowds’, and our groups are designed to create wise crowds.

On the healthcare provider side, we need to do the research that we're doing, publish the research, and chip away some of the discord. Hopefully, providers will take a step back and think about patients with low stage disease, the T1a patients, and consider what are the most important goals for them.”

References

1. https://kccure.org/
2. https://ikcc.org

 

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Posted on 12 June, 202312 June, 2023