Global Rheumatology Alliance: Remembering Phil Robinson—Part 2

In this podcast, Drs Kim, Sparks, and Liew continue their conversation about the Global Rheumatology Alliance and remember the late Phil Robinson, who was instrumental in the group’s creation and work.

Alfred Kim, MD is is director of the Washington University Lupus Clinic and an assistant professor of medicine at Washington University School of Medicine in St. Louis, Missouri. Jeffrey Sparks, MD, is a rheumatologist and research scientist at Brigham and Women's Hospital and an associate professor of medicine at Harvard Medical School in Boston, Massachusetts. Jean Liew, MD, is an assistant professor of medicine in rheumatology at the Boston University School of Medicine.

Transcript:

Welcome back to this podcast on the Rheumatology and Arthritis Learning Network, with Doctors Al Kim, Jean Lu, and Jeff Sparks, as they review the accomplishments of the Global Rheumatology Alliance during the pandemic, and as they remember the late Phil Robinson, who was so important in its creation and its success.

Dr Kim:  I think the other thing about the GRA was, and I'll call these spinoffs, there were a lot of other things that occurred because of the GRA. I think, Jeff, you mentioned the Mass Gen Brigham efforts that you and Zach Wallace, and congratulations on your RO1 ...

Dr Sparks:  Thank you.

Dr Kim: ... to be able to ... your efforts there really did come from the GRA, and you really just then said, "You know what? We actually have a really nice population here in Boston to be able to ask really important questions." Then we were motivated locally here to start the COVaRiPAD, the Immunogenicity and Reactogenicity project for SARS-CoV-2 vaccination. This was a direct result of my involvement with the COVID-19 GRA. Again, I think there's a lot more than the information and analyses that were critical for patients that came out of this. There was a lot of really motivating and inspiring stories that arose from this that allowed us to be able to really cast a much wider net than the GRA by itself.

Let's fast-forward to, maybe, I don't know, maybe 9 months ago or a year. When do the discussions to consider shutting down the registry, when did that start, and what were the decisions that went into that?

Dr Liew: I could get my notebooks out and give you the exact dates, because I take notes about everything and all my GRA notebooks are above my head. They're all the same color. They're gold. I could tell you that. It's really, I think when we talk about the GRA winding down or shutting down, it's not a bad thing. It's that the original goal to have this physician registry with other sort of subaims related to it, that goal was fulfilled.

Then by the time we were talking about stopping incoming new cases into the registry, at that time, it was because we had answered all the questions that we could with rigorously designed studies. We were needing to answer different questions, vaccine efficacy questions at that time, that required totally different infrastructures, different ways of collecting data that were better served by these spinoff studies that had separate funding and just sort of separate infrastructures. The need for registry collecting cases like a GRA, that time period was over. It wasn't so much like, "We need to shut down or we're tired of doing this, or we don't have time anymore."

It was more we need to let these other ventures grow and answer these other questions that we can't answer with these types of data anymore. Actually, we had to go back and allow one more study from New Zealand, because they were then hit with Omicron. It was a unique population to be studied, because everyone had been vaccinated and no one had gotten COVID before that happened. We wanted to see in this unique population, SARS COV-2-naïve, vaccinated, when they got omicron, what happened?

That was really the last data collection that we did from New Zealand, and that paper has just been submitted. It was really because we had answered all the questions using our registry infrastructure.

Dr Kim: I agree. I think a lot of people I talked to anecdotally were a little bit surprised that were outside of, and that data collection was going to slow down. I think internally, we all felt like that at some point, we've hit the saturation point. We really couldn't add any more value to the analyses by having, say, another thousand cases entered or whatever. I guess wrapping up here…

Dr Sparks:  I'll mention one other thing. The physician registry is, again, I think what most people think of for the GRA, and I think when it was started, cases were few and far between, which was obviously a good thing, particularly in the prevaccination era. I'd say that here at MGB with Zach Wallace—Mass General Brigham—we'd been systematically collecting everything and sending it to the GRA. Actually, when Omicron hit, it was sort of like, the scenario had reversed, where it was harder to find people who didn't have COVID at that point. We weren't scrambling for cases. There were population databases that you could find COVID cases, and there's a clear denominator.

I think when Omicron hit, it sort of flipped the script, where COVID became pretty common and having a denominator was pretty important. The timing of vaccinating was more important. I think it was, to me, that's sort of when things shifted. Actually, we became so overwhelmed with cases that we couldn't send them to the GRA either.

The only other thing I'll mention is the GRA does consist of more than just the physician registry. I think this is the grand vision, and hopefully we'll touch upon this in more detail, but we've already talked about some of the editorials. There were others besides the rush-to-judgment paper.

There was really important systematic reviews that are highly cited and really very helpful. Then there was patient-facing surveys, the first related to the early experience in the COVID pandemic. Then the second, which I led actually, with Julia Simard, along with Jon Hausmann, Emily Sirotich, and others related to the vaccine experience, really rolling out a brand-new vaccine to our patients. What are their perceptions? What are the early clinical signals? Then there were also projects related to telehealth, both related to trainees as well as patients and providers.

There's probably a few other projects I'm forgetting that Jean probably knows, but it's really incredible, the vision and scope related to not just what rheumatologists are going through, but what the patients are going through and how care is delivered differently.

Dr Kim:  Yeah, I think the one other thing that we absolutely cannot forget either are the lay research summaries that were absolutely critical to be able to provide patients simple, but not dumbed down, descriptions of the work that was being done. Obviously, medical research papers are very technical. We needed a mechanism to be able to get this out to the lay public. I can't remember even what the genesis of that was. I guess it was a part of the original planning, right, Jean?

Dr Liew:  It was part of the patient board. The patient board was from the beginning part of, so there's the steering committee that was I was on. There was the scientific advisory subcommittee that the 2 of you were on. There was a patient board, and it was the patient board's determination that they needed to have lay summaries or plain language summaries to accompany our manuscripts as part of the overall mission to disseminate our information. We were going to collect, analyze, and disseminate our information. That was part of that.

Dr Kim:  Yeah. Any other thoughts or comment before we wrap up talking about Phil?

Dr Liew: No, I think we should now.

Dr Kim:  Yeah. As we had mentioned before, Dr. Philip Robinson was one of the core individuals that really spearheaded, along with Jean, the COVID-19 Global Rheumatology Alliance. He unfortunately passed away around the New Year's period, 2023. The ACR had a wonderful memorial, global memorial for him, which was very emotional for all of us. We all knew Phil in different ways. I've known him through ACR before, but never really chatted about science for medicine with him until the GRA. Then I realized just what an amazing individual he is, how he puts himself second, and he puts the mission first. You guys have had your own interactions with Phil. Jean, why don't you go ahead and start, because you've had probably most interactions out of the 3 of us?

Dr Liew:  Yeah, over 100 hours on Zoom calls with him as part of the steering committee. To highlight, it's hard to just say what an amazing human, researcher, clinician Phil was. We already talked about his foresight. We've mentioned it already, that at the very beginning, the very first few days of wanting to start the GRA before he had even named it that, he already knew he wanted to have all these, he wanted the physician registry, which was answering the initial question on Twitter from Len Calabrese.

He knew that there should be literature reviews answering these other questions that people were going to ask. He wanted to incorporate the group that was going to eventually make the patient survey. He had roles, and just had this idea of this organization that was more than just his physician registry. He had it written down within the first few days of even answering this call on Twitter. That amazing foresight that all held up. That's one big thing and that's just amazing to me now.

The other thing was that his collaborative spirit, getting people together, very different people with different experiences and expertise, getting them together to work on things, and getting them to work together, as well as doing a lot of work himself. He was always jumping in and writing in our Google Docs. He was never the kind of person who just supervises and has other people do things. He was always in there with us. That was also incredible, knowing that he was the father of 2 very small children, who we saw on these Zoom calls. He was always engaged with them, engaged with his family, but engaged with us, and obviously engaged with his actual job that he had as well. That collaborative spirit and his motivation to do so much was his second major thing about him.

The last major thing to highlight about Phil was his sort of mentorship, and getting a lot of people, giving a lot of people roles in this, and giving them the ability to do big things. People from lower middle-income countries. It was truly global. People who are still in training, like myself, people who are patient, patient representatives, just sort of everyone who was interested, who could find something to do. He invited people in and developed this structure, where there was just a sort of trickle-down mentorship structure framework, just made it work.

He was a governance guy, so he was into the structure and making sure that those pieces fit together. It was just, there's just so much. Those are the 3 things I would want to highlight about him.

Dr Kim:  Jeffrey?

Dr Sparks:  Oh, a lot. I certainly reiterate everything Jean says, and he was just really an incredible person. He taught me a lot. I think kind of the overarching lessons—he is someone that had an incredible impact, and it was the way he carried himself. It was how he thought big, it was how he was generous, it was how he was kind. He certainly was rigorous, and smart, and detail oriented. A lot of the things we think about as physicians and scientists, about knowing a lot and working hard, and he had those too.

He had this sort of intangible, giving quality that was just really contagious and palpable no matter what. He was on calls at 3, 4 AM. He just embraced life. The way that he tackled a question, it's easy to get down in the dumps when you're isolated home on Zoom not seeing people, but he was just always so bright, and wanting to look for the future and to think big. He really emphasized that this was a big deal, it was making a big impact. What we did here had repercussions and was going to matter. People were going to read it.

The way he just galvanized people to really make it so that you think big, and that the work you do matters, and that being kind and generous to others is really the way to get by. Obviously, being smart and rigorous and working hard are good qualities too. I think his kind nature, his generosity have really impacted me. I really think about him a lot. I'm really grateful I got to know him.

Dr Kim:  Yeah, it was obviously a tragedy that he was taken at such a young age. Another obvious thing is that he was a blessing to the people that were able to interact with him. I feel that the impact he's had through the Global Rheumatology Alliance just for patients, along with the rheumatology community, is the type of legacy he deserves. With that, I want to thank Jeff, I want to thank Jean, for hopping on to this discussion.

Everything COVID-19 Global Rheumatology Alliance, really one of the most amazing experiences that I've been able to participate in professionally and personally, too, because I've been able to meet great people like you guys. With that, I want to wish everyone a wonderful day, and I hope you enjoyed this podcast. Thanks.