COMMENTARY

Clinical Trials Need More Transparency for Patients

Mark A. Lewis, MD

Disclosures

November 07, 2019

This transcript has been edited for clarity.

This is Dr Mark Lewis for Medscape. I am the director of gastrointestinal oncology at Intermountain Healthcare in Utah.

I've been thinking a lot recently about how patients acquire medical knowledge.

As many of you may know, I am a patient and a physician—and I know that I am enormously privileged to have had the education through which I can interpret the signals from my body through a professional lens. But we all also live in the Information Age, and it's not uncommon these days to search online for anything that interests or concerns us. We have so many facts at our fingertips. A recent survey[1] has shown that 97% of patients take advantage of online search engines to learn more about things that are bothering them medically.

On the other hand, there has been a trend among physicians to almost rebel against this phenomenon. A meme is going around—you can purchase a coffee cup with the saying printed on it, should you so desire—that says, "Don't confuse your Google search with my medical degree." I think this expresses a certain disdain for the idea that our years of training, our incredibly intense apprenticeships, all the experience that's gleaned through clinical practice can be replaced by Google. I see a tension around how information is distributed.

Patients now live in the era of shared decision-making. No longer does paternalism dictate that the doctor will order what you should do and you will reflexively do it. There should be, and increasingly is, a conversation around treatment options. So patients understandably are trying to come to their visits better informed about the conditions—and I'm thinking specifically about the cancers—that are bothering them.

One real impediment, though, is clinical trials.

Clinical trials are the way we get better in oncology. Research is how we make progress systematically, but the results of clinical studies are not being shared very transparently with patients. A recent inquiry[2] found that approximately 50% of patients encounter a paywall when they are trying to find clinical trial results online. There's a real barrier. Patients are not able to find out the outcomes of studies that might actually apply to their specific circumstances.

I think doctors may be able to help their patients circumvent that obstacle by sharing with them the primary sources upon which they are basing their clinical decision-making. For example, if I am recommending that a patient undergo a treatment, I do my best to print out and provide the article(s) on which I'm basing that choice. I think that goes a long way toward intellectual honesty and engagement of patients in the conversation about their own care.

But I also think there's a social contract around clinical trials themselves that we need to address.

Many patients enter a clinical trial, especially in the early phases, knowing that there is very little chance that it will benefit them personally. They know they are advancing the field as a whole, but they may not actually see a personal gain from participation in that study. So I believe that the very least we can do as a community is to ensure that we are properly disseminating the results of the studies to the patients who participated in them.

It's unfortunately quite common that negative trials—meaning, those trials that don't reach the statistically prespecified outcomes they were intended to reach—sometimes don't get published or they aren't described beyond professional meetings to which the patients may not have access.

These patients have given of themselves, quite literally, and I feel strongly that we owe them the results of the trials they participate in, not just for their own use but for the broader understanding that other patients can then share in.

We live in an amazing time. We live in the Information Age. We have so much that we can learn from our computers and from one another. While our patients are increasingly autodidactic, we shouldn't punish them for that. We should meet them in the middle; bring our professional acumen and our access to trial outcomes to our patients in the clinic. Then together, we truly make the right choices for them.

Mark A. Lewis, MD, is director of gastrointestinal oncology at Intermountain Healthcare in Salt Lake City, Utah. He has an interest in neuroendocrine tumors, hereditary cancer syndromes, and patient-physician communication.

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