How to accidentally become a researcher

“It doesn’t have to start with a huge trial. It starts with a patient and it starts with a problem.” —Dr. Gord Sussman

How do we move from the exam room to the frontlines of discovery? On this episode of The Allergist, Dr. Mariam Hanna talks with Dr. Gord Sussman about how curiosity—not a research grant—launched his decades-long contribution to allergy science. From identifying the early signs of latex allergy to shaping the treatment landscape for urticaria and hereditary angioedema, Dr. Sussman shares what keeps him asking the next question, and how any allergist can get involved.

On this episode:

• Why Dr. Sussman initially thought he’d never pursue research—and what changed his mind
  
  
• How one nurse's anaphylactic reaction to latex launched a field of study
  
  
• What it was like to design and run early research trials for food allergy challenges and peanut desensitization
  
  
• Why recruiting patients for trials has become harder—not easier—over time
  
  
• What makes a good research coordinator and why infrastructure is critical
  
  
• How to identify patients who may be open to research, and when not to push
  
  
• Why some promising drugs never reach market—and what frustrates Dr. Sussman most
  
  
• What advice he gives to allergists who are research-curious but hesitant
  
  

You don’t need a lab coat to help change practice. Just curiosity, commitment—and maybe a really good clinical coordinator.

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The Allergist is produced for CSACI by PodCraft Productions

Transcript

Dr. Mariam Hanna

Hello, I'm Dr. Mariam Hanna, and this is The Allergist, a show that separates myth from medicine, deciphering allergies and understanding the immune system. The first patient I reacted at the very end of their oral challenge, with only mild symptoms, really made me think hard about the practice of strict avoidance. My first existential moment about doing immunotherapy, before it hit its prime time, I was equally questioning my recommendation as I spoke with the family.

I don't know if that came across. Strict avoidance, reassess, and I can't really remember how long after, yadda yadda. I remember going home that day and on the drive, imagining my grandma.

Would she have backed off if she saw her babies having mild symptoms? Or would she have just started mixing in a little bit of it in the food every day and just pushed it in, shove on? By then I made it home, and like so many of us, I really didn't chase it.

I moved on, I was getting ready for my next clinic day, the next email had come, the next football practice to drive my kid to, and that little thread of curiosity, well, it actually, thankfully, turned into my current practice. So much has changed, because I didn't let it go. Today's guest, Dr. Gord Sussman, is here to remind us what can happen when we don't let go of those moments, when we actually follow that thread. He's been behind some of the most practice-changing discoveries in our field, not because he set out to be a researcher, but because he kept asking questions. He didn't let go of the, hmm, I wonder moments. And in this episode, he's going to show us how any allergist, not just the ones in big research centres, can be part of shaping the science that shapes our care.

From leaping into peanut prevention, to calming the storm of chronic urticaria, or navigating asthma with Navigator, and then Sigma, when Gen Z couldn't even use that term. It's a unique topic, and I'm delighted to introduce today's guest. Dr. Sussman is a Professor of Medicine at the University of Toronto, and practices at St. Michael's Hospital in the Division of Allergy and Clinical Immunology. He was among the first to report latex allergy, and helped drive efforts to reduce its impact during the 1980s. His research has shaped our understanding of chronic spontaneous urticaria, hereditary angioedema, and peanut anaphylaxis, contributing to major advances in the treatment of all these conditions. He currently focuses on cannabis allergy and allergen cross-reactivity.

Dr. Sussman, thank you so much for joining us today, and welcome to the podcast!

Dr. Gordon Sussman

Thank you, Mariam. It's a pleasure being here, and I appreciate the kind introduction.

Dr. Mariam Hanna

Awesome. You've been deeply involved in clinical trials, just like we discussed in allergy and immunology. What was the initial draw for you to go in this?

You've gone in many directions with it, but what initially drew you to research?

Dr. Gordon Sussman

It's important to understand what we do as allergists. In doing that, you want to understand how to understand the pathogenesis and treatment of these conditions that we all treat every day. Being curious is trying to get to the bottom of what we're doing, and understanding will allow you to get there.

I think curiosity is a big part of research that all of us should be driven by.

Dr. Mariam Hanna

Okay, so that curiosity. Was there a particular trial or breakthrough movement early in your career that shaped your view or the impact of research that it had on your day-to-day career or day-to-day dealings with patients?

Dr. Gordon Sussman

Mariam, when I started doing research, I never thought I would. I had trained in the United States, and we were trained to do research and to give talks. In doing that, I had enough when I came back to Toronto, so I didn't really think I would end up doing research.

The impetus was when I started with patient care. My focus was trying to look after patients. When we saw patients with unusual reactions, I wanted to understand that.

For instance, with latex, it was not difficult to diagnose latex allergy. It just was never diagnosed. The person was a nurse from Oshawa who put on a latex glove and then passed out.

The chief of medicine at Wellesley at that time, Murray Erowitz, would ask me, how could you absorb enough latex from a glove to cause anaphylaxis? From that one case, Susan Tarlow had a patient who was inspecting gloves and had asthma from inspecting gloves because the powder, which was latex adsorbed to the powder, was being inhaled by the worker who had occupational asthma. From there, the whole field exploded in the 1980s.

Really, that was the impetus for me wanting to do research. In those five or 10 years, I found people that I collaborated with and worked with them very closely to be able to understand it. Because of that, it's been important because we've actually eliminated latex allergy.

Very rarely do you see a latex allergy patient today.

Dr. Mariam Hanna

Okay, so it's actually helpful that you were turned off of research from your initial training and then got back into it because of patient care. Are you more critical when you go through a trial or when you look at the results, having been personally involved in clinical research trials?

Dr. Gordon Sussman

You know, the rewarding part is the way we treat diseases has changed completely since I started. Yes, you're able to critically review better, and when you're an expert in an area, hopefully you can do that. It's very important to be able to interpret data and to be able to critically appraise it so you can understand the significance.

But the most rewarding part is the fact that we have these new treatments that we never had before and we never could do before. For instance, let's say with food allergy, we started with a double-blind placebo-controlled challenge to see if these people that had these reactions were actually reproducible. And we did it with a dietician, Sharon Parker, who worked at the university, and Susan Tarlow and Art Lesnov.

And it was very interesting, and the interesting part was that we could reproduce some symptoms and we could reproduce some instances, but it was a completely different way to look at the way we see patients. And I think that we need to be able to do that in clinical practice as well, not just in research studies.

Dr. Mariam Hanna

Yes, double-blinded food challenges are actually very eye-opening once you get involved in them in research and realizing that they can really change your perception of that patient's food allergy.

Dr. Gordon Sussman

And you see from that, Mariam, we could, so you fast forward, so we did the double-blind challenges, but then you were able to critically appraise and also write a protocol. So we wrote the protocol for the first peanut desensitization with a drug called ketotifen. I don't know if anyone still uses ketotifen, it's an old antihistamine.

But the desensitization we did with the experts in the US, and we used ketotifen to protect the patients. And to be honest with you, the first patient I did, I was very nervous, right? But it was a lot of fun because we actually were involved from the beginning to the end of the study.

And look what's happened with the field in general. So you start with one problem and then you can sort of sort out all the other things that follow. And if you can critically appraise, you can actually write protocols and critically assess the effects of these treatments, it's very important to be able to do that.

Dr. Mariam Hanna

Absolutely. It's a skill, but it also revolutionizes patient care, which is again what you were saying grew you into this. Are there misconceptions that you hear from allergists about participating in research or referring patients to clinical research trials?

I know there's the patient side of it, like reluctance for some to be the guinea pig, as they like to call it. But what about from allergists or from referrers as well? Are there misconceptions to address there?

Dr. Gordon Sussman

I don't think so, to be honest with you. I think that if there are new treatments and they're exciting new treatments, that we'll be able to have people collaborate to allow you to get these newer treatments on the market. So I don't think from the viewpoint of allergists.

From the viewpoint of doing clinical research in general, it's more difficult than it was back when I started doing research. The reason for that is the protocols are more difficult. You don't have nearly as much input into the protocols.

And it's hard with these new treatments because, for instance, with hereditary angioedema, which it's changed, it's unbelievable how many drugs there are to treat a rare disease. For hereditary angioedema, we can treat exactly, but after we finish, these patients like the drugs and they don't want to be in clinical trials. And it's a rare disease, so it's very difficult to continue research with rare diseases.

For urticaria, well, since the first study of omalizumab, we could very easily recruit because everyone wanted to be in the study and allergists wanted us to take over the patients. And we actually did the study ourselves with giving them to the people that were doing that. We had so many patients, it was very easy.

But today, to do a study with biologics, they have to be off the biologic for nine weeks. Very hard to get an urticaria patient off a treatment for nine weeks, right? So it's more the newer treatments and the better treatments that make research more difficult to do in the future.

Dr. Mariam Hanna

Why are protocols more involved? I heard you say that, like the protocol is more involved or less flexible. Why is that?

Dr. Gordon Sussman

A lot of that, I think, is regulatory, right? The regulatory issues have changed completely. For instance, in the 1950s, with antihistamines, you didn't have to do anything.

There was no safety data that you needed and no efficacy data. It was just put on the market. And then in the 1980s, the early 80s, when Saldane and Hisminol were on the market, that's terfenidine and estemazole, they missed the cardiac arrhythmias and it was taken off the market.

So the studies have become more involved, for instance, with antihistamines because of the QT interval and the effect on the QT interval. And because of that, the safety aspect has become very, very important. And we don't only want to demonstrate efficacy, but you want to demonstrate safety.

And I think that's why the studies have become more complicated.

Dr. Mariam Hanna

Okay, more complicated, but hopefully for the better and patient safety in mind.

Dr. Gordon Sussman

At the end of the day, that's what we hope for. But again, when you do a clinical trial and you collect safety data, when the drug comes on the market in real life, often you'll see side effects that you don't find in clinical trials. So you have to remember that.

Dr. Mariam Hanna

Right. Absolutely. Absolutely.

For allergists in the community, what are some realistic ways to get involved in clinical research?

Dr. Gordon Sussman

Well, the difficulty is you have to be set up to do clinical research. And the most important thing, you have to have the equipment and you have to have the infrastructure with staff to be able to do research. There's two aspects.

Number one is the space and the materials. But the most important thing is having a very good clinical coordinator. And if you have a good clinical coordinator, it makes research so much more fun and so much easier.

Dr. Mariam Hanna

Then you can focus on the fun part of research. So yes, no, I would agree with that. I've learned that when you are approaching a patient about a clinical research trial, there's a way to discuss it or there's a way to approach it or there's the right kind of patient for clinical research and maybe not the right kind of patient.

So part of it is me and part of them, I think, is the patient. What should an allergist be asking for when they're about to refer a patient for clinical research? And what makes a good research participant that we should potentially approach?

Dr. Gordon Sussman

The patients are different. Some patients do not want to be in a clinical trial. No matter what you say, they're not going to participate.

But there are a subset of patients that want to be in a clinical trial. And again, that may be driven by their disease, but sometimes that's driven by their want to help and their want to do research. When we have patients for research, we have to explain all the treatments that are available that they can receive and make it impartial for them to participate in the trial.

That's why it's more difficult today to recruit patients. And that's something that's very important for allergists to understand. There's no sense in having 10 clinical trials if you can't recruit any patients in a trial.

You have to have trials that you reasonably can recruit patients.

Dr. Mariam Hanna

Absolutely. And I think sometimes the reasoning that patients have for wanting or not wanting or are things that are pretty fixed about them is one of the things I have learned from approaching patients about trials. Some absolutely want to explore the issue and some are like, nope, and no amount of explaining is helpful.

Dr. Gordon Sussman

And you're not going to change them, Mariam. So I think that you want to try to have patients that are interested because the studies for them is complicated, too, with the diaries and the entries that they have to do. It's a job for our patients doing clinical trials today.

Dr. Mariam Hanna

Absolutely. What are some lessons learned over this journey that you've had with clinical research or even trial fails that taught you something that you found valuable in this research journey?

Dr. Gordon Sussman

There's different trials, but the trials that I do in terms of clinical trials, some are good and some are not. For instance, there's some trials that we've done that I'm very excited about the drug, but industry does not decide to promote it because it's more the business side. And I find that difficult because I would like to treat patients with something that is different and something that is going to allow them to live a better life.

So I find that sometimes difficult.

Dr. Mariam Hanna

Absolutely. That frustration or that tension. Okay.

How do you maintain patient trust or patient enthusiasm as you're going through this enrollment process? Some are our own clinic patients and some are new patients that are coming in for clinical research, and you're just establishing that kind of relationship. What's your approach into that?

Dr. Gordon Sussman

I'm going to draw on Marcus Moorer, who is the rock star of urticaria. And when he talked about urticaria, everyone would listen. He was very enthusiastic, right?

He would get the whole audience involved and everyone would want to treat urticaria. We have to be enthusiastic with our research and we have to have our patients have that enthusiasm so they'll participate. It's very, very important to do that.

And, you know, I had a friend who said with Marcus, this is a funny story, that if he knew he was following Marcus in a presentation, he would have had an extra cup of coffee, but that would have just made him shake more. You have to have that enthusiasm to do research too. And you can't really teach that.

That's something that you have to have intuitively and you have to want to do research.

Dr. Mariam Hanna

Love that. Well, what gives you enthusiasm these days about the future of research? Where is this going?

What makes you excited about the future of research?

Dr. Gordon Sussman

Again, with the new research we're doing with biologics is very exciting. And with these new treatments for diseases, urticaria has changed completely since I started in the 1980s. I was lucky enough when I was in Colorado to be put in the urticaria research team.

I could have been put on the cryoglobulin research team and then I probably wouldn't have done research. It's funny because when we did those early trials, you couldn't get participants. So we put ourselves in the antihistamine trials like the tyramine and the lodoxamide studies and it made me sick.

Maybe that's why I didn't want to do research after I finished, but it was something that I guess you develop through your life. It's good because there's a lot of opportunity in research and it's an area where I think everyone should want to at least try to see if they can do it. But again, the constraint is the infrastructure and the staff that you need to do proper clinical research.

Dr. Mariam Hanna

Absolutely. Okay, for allergists listening who might just be curious but hesitant, what's one piece of advice you want to give them to nudge them towards doing this for research involvement? You said some of the barriers, but how do we nudge them a little bit forward to say, consider this, there's a lot of therapies coming down the pipeline that need clinical research?

Dr. Gordon Sussman

Well, for instance, when we did research initially, we would see a case and then apply, it's called an investigator initiative grant, where we would try to have a new treatment for a disease that we think would be effective, right? So for me, that was in the mid-90s when I thought that Zolair or omalizumab would be a good treatment for urticaria, right? And again, you're turned down, but the enthusiasm, it makes it worthwhile.

And the fact that it's changed the way we treat urticaria really is very sort of rewarding when you try to treat patients. So I'm not really a researcher in the lab. I have people that I work with, that I collaborate with.

I'm a physician, right? I work and see patients like everyone else, and I get up and I go to work, but I enjoy trying to understand and trying to better treat our patients. And I think that should be the impetus for people wanting to do research.

And it doesn't have to start with a huge trial. It starts with a patient and it starts with a problem, and then you develop an interest. And once you develop an interest, it's not that difficult to get involved with clinical research if you want to.

Everyone really can get involved with clinical research if they want to.

Dr. Mariam Hanna

If they want to. Excellent caveat at the end there. All right, time to wrap up and ask today's allergist, Dr. Gord Sussman, for his top three key messages to impart to patients and physicians on today's topic, clinical research trials. Dr. Sussman, over to you.

Dr. Gordon Sussman

My number one pearl is try to better understand the diseases we treat. Number two is get involved in research early on in your training. And number three is publish your research.

It may start as a case history, but proceed to something much more, and it's very rewarding.

Dr. Mariam Hanna

I love that. Thank you, Dr. Sussman, for joining us on today's episode of The Allergist.

Dr. Gordon Sussman

Thank you. Appreciate it.

Dr. Mariam Hanna

This podcast is brought to you by the Canadian Society of Allergy and Clinical Immunology and produced in collaboration with PodCraft Productions. The opinions shared by our guests are theirs alone and do not necessarily reflect the views of the CSACI. Please remember that this podcast is for informational purposes only and does not provide any individualized medical advice.

For show notes and relevant links from today's discussion, visit www.csaci.ca. While you're there, check out the Find an Allergist tool to connect with a specialist near you. If you enjoyed this episode, we'd love your support. Leave a review and a five-star rating wherever you listen to podcasts.

It helps others find the show. And remember, it doesn't start with giant research trials. It starts with a patient and lots of enthusiasm.

Thanks for listening. Sincerely, The Allergist.