The Data Behind Proton Therapy Outcomes With Jillian Plochocki
Episode Summary
In this episode, David Raubach sits down with Jillian Plochocki, Executive Director of the Proton Collaborative Group (PCG), to explore one of the most important yet least visible engines driving proton therapy forward: real-world data collection. PCG is an independent 501(c)3 nonprofit based in the Chicagoland area that was founded in 2009 alongside the opening of the Procure Proton Therapy Center in Oklahoma City, at the time just the sixth proton center in the country. Today PCG has grown to 31 member centers with two more expected in 2026 and 2027, and its registry now holds data on more than 40,000 patients treated with proton therapy across 40 to 45 different disease sites.
Jillian explains the critical distinction between a clinical trial and an observational registry. Clinical trials impose strict treatment parameters on patients; the PCG registry simply collects a standardized real-world data set, dose, follow-up intervals, adverse events, and disease status, while patients receive whatever treatment their radiation oncologist prescribes. This design means the registry captures genuinely diverse demographics from across the entire United States, a breadth of data that a single-site or geographically constrained trial cannot replicate. The Oklahoma Proton Center enrolls more than 95% of its patients on the registry, making it one of PCG’s highest-contributing sites.
A significant portion of the conversation covers how registry data moves from a clinical computer screen to a published paper. Volunteer physicians who serve on ten disease-site committees, including a highly active lymphoma committee chaired by Dr. Yolanda Sang of the University of Washington, identify clinical questions, request data pulls from the database, analyze the results with PCG’s statistical and medical-writing support, and ultimately publish findings. PCG also maintains eight active clinical trials in its portfolio, including the Breast09 trial led by Dr. Isabelle Choy of the New York Proton Center, which compares hypofractionated proton therapy against conventional fractionation to measure grade-three-and-above toxicities such as skin reactions.
Jillian brings a background in psychosocial oncology to her registry work. She began her career at the American Cancer Society in Chicago and later led program development at Living Well Cancer Resource Center in Geneva, Illinois, running yoga, nutrition, support-group, and individual-counseling programs for patients and families. She explains that research consistently shows patients with poor psychosocial support experience worse clinical outcomes, and she urges newly diagnosed patients to bring a note-taker to every appointment, write down every fear and question, and use distress-screening programs that are now required of any Commission on Cancer-accredited facility. If a patient scores a six or higher on a distress screen, a social work consult is automatically triggered.
Looking ahead to 2026 and 2027, Jillian describes PCG’s roadmap: improving data quality at the site level, increasing the volume of peer-reviewed publications, rolling out a Vision Tree / Brain Lab patient self-reporting tool that sends annual text or email prompts so patients can report disease and overall status in under five minutes, and exploring the integration of artificial intelligence to surface patterns in the registry’s 40,000-patient dataset that human reviewers might miss. She credits former board member Dr. Bill Hartzell, founding medical director of the Chicago Procure center and a University of Oklahoma alumnus, as the mentor whose support brought her to PCG a decade ago.
What You’ll Learn in This Episode
- Proton Collaborative Group (PCG): An independent 501(c)3 nonprofit founded in 2009 that unites 31 proton therapy centers across the United States to advance research through shared data and collaborative clinical trials.
- Observational Registry vs. Clinical Trial: Unlike a clinical trial’s strict treatment protocols, PCG’s registry collects real-world outcomes data on patients who receive standard-of-care treatment, capturing a broader and more demographically diverse patient population.
- Registry Scale: PCG’s registry is the largest proton therapy-specific registry in the world, with over 40,000 enrolled patients and data spanning 40 to 45 distinct disease sites as of 2025.
- Disease-Site Committees: Ten volunteer physician committees, including active groups in lymphoma, breast, and prostate, mine the registry data, identify research questions, and develop new clinical trial concepts submitted during annual calls for concepts.
- Hypofractionation Research (Breast09 Trial): PCG’s newest clinical trial compares hypofractionated proton therapy (higher dose, fewer sessions) against conventional fractionation for breast cancer, measuring grade-three-and-above toxicities to determine whether a shorter course can become the standard of care.
- Vision Tree Patient Self-Reporting: PCG has partnered with Vision Tree (part of Brain Lab) to send patients annual text or email prompts on their treatment anniversary, allowing them to self-report disease status and overall health in minutes without a clinic visit.
- Psychosocial Oncology: The psychological and social dimension of a cancer diagnosis affecting patients and their families; research shows that poor psychosocial support correlates with worse clinical outcomes, making programs like support groups, nutrition counseling, and distress screening clinically important.
- Distress Screening: A requirement for Commission on Cancer-accredited facilities in which every patient periodically completes a standardized distress questionnaire; a score of six or higher automatically triggers a social work referral.
- Data Quality Assurance (QA): PCG employs a multi-layer QA process including front-end staff training, randomized source-document verification against original lab reports, and a targeted data-cleaning audit whenever a physician requests a specific data pull for research.
- AI Integration in Registry Research: PCG is actively exploring how artificial intelligence can be applied to its 40,000-patient dataset to surface patterns and research questions that human reviewers may not detect through manual analysis alone.
- Real-World Evidence and Insurance Coverage: One of PCG’s founding purposes was to generate real-world outcome data demonstrating the benefit of proton therapy, giving insurance companies the evidence needed to justify coverage decisions for this newer modality.
Jillian Plochocki’s decade at PCG offers a clear window into the unglamorous but essential infrastructure that makes proton therapy research possible. Whether she is coaching a research coordinator through her first data entry, advocating for a patient to write down every 3 a.m. worry before the next oncology appointment, or mapping out how AI might one day comb 40,000 patient records for hidden patterns, her work is animated by a single conviction: meaningful research takes time, it takes people rowing in the same direction, and every patient who agrees to be on that registry is an active participant in making the next patient’s outcome better. To learn more about the Proton Collaborative Group, visit PCG’s website and explore the disease-site committee pages and open clinical trials.
Full Transcript
Read Full Transcript
Transcript generated from the episode’s audio. Speaker names are identified from the context of the conversation rather than from recorded speaker data, and automatic transcription may misspell names and terminology. Please refer to the video for the authoritative version.
David Raubach: Thank you for joining us on today’s episode of the Cancer Project podcast. I’m really privileged to have the executive director of the Proton Collaborative Group, Jillian Plochocki, with us today. Jillian’s been working with the Proton Collaborative Group for a number of years, and is also a very good friend of mine and has had a big impact on the proton therapy industry as a whole. So, we’re excited to have her with us today. So, Jillian, thank you.
Jillian Plochocki: Yeah, you’re welcome. Thank you for having me.
David Raubach: I’ve got to ask first, you’re in Oklahoma. So, how’s your trip been so far?
Jillian Plochocki: Oh, it’s been wonderful. I think I had mentioned before that we did a wonderful housewalk in, was it Mesta Park? Super cute. I have a lovely old home back in the Chicago area that I own. So, it was nice to see something that was similar and how they decorated, and more importantly, the renovations, which were beautiful. It’s a beautiful area. I love it.
David Raubach: And you went to a Thunder game.
Jillian Plochocki: We went to a Thunder game, and the energy is legit here. I will say, of course I’m always a Chicago Bulls fan, but I think you guys might be my number two.
David Raubach: Yeah. Okay. Good. Good. Well, we’re hoping to have a six-year or an eight-year run like the Bulls.
Jillian Plochocki: Yeah, that would be great. Back in the 90s.
David Raubach: So, the proton collaborative group, tell us what that is.
Jillian Plochocki: Yeah. So essentially we’re a wonderful group of people that are in the proton therapy field that have sort of banded together to further proton therapy and access to proton therapy for patients. And we do that in the form of clinical trials and, more importantly, the registry. I think that’s probably what we’re more well known for. It’s a way for all of us to be able to work together to kind of band resources and knowledge and move the field of proton therapy further along. Obviously, the saying goes that you can do more together than you can alone. So, that’s our mantra.
David Raubach: So, you mentioned the registry. What do you mean by the registry? What is a proton registry?
Jillian Plochocki: Yeah. So essentially, when you’re looking at doing any type of research, you have, most people would probably mostly be familiar with clinical trials, but for us we focus a lot of our efforts on hosting a proton therapy specific registry. So within the registry, it’s observational, meaning that we’re collecting data that is happening in the clinic in real time, as opposed to a clinical trial, which is, you’re really putting some pretty strict parameters on what exactly you’re doing in terms of looking at outcomes.
Jillian Plochocki: So the nice thing about the registry is everything is real time, live in the clinic. You’re looking at real-world outcomes versus a more controlled outcome that you would see in clinical trials. So we are the largest proton therapy registry in the world, which is something I’m very proud of. We’re very unique in that regard, and it’s, we’ve come a long way since our inception in 2009, for sure.
David Raubach: So give us a sense of that scale. You said it’s the largest registry in the world. So in terms of, I guess, number of patients enrolled or number of centers.
Jillian Plochocki: Yeah. So we have 31 centers right now that are part of PCG. We’ve got 32 and 33 in the pipeline. So, you’ll hear more about those two probably in 2026 and 2027. Over 40,000 patients that have been treated with proton therapy are enrolled on the registry, which is, it’s obviously a gold mine of information that can help us figure out how proton therapy has impacted patient outcomes over an extended period of time. I would say a little over 40, between 40 and 45 different disease sites are represented in the registry, which is also great.
Jillian Plochocki: So, we like to usually, typically monthly, we’ll send out a report to all of our sites to say, you know, this is our enrollment. And then, more importantly, these are all the disease sites that we have enrolled so that the PIs and the physicians that are treating these patients can see, oh, you know, we have 3,000 head and neck cases. Is there something specific to the head and neck cases that I want to maybe look at in depth for all those patients, and then hopefully maybe try to make the treatment for head and neck cancer better?
David Raubach: So, what is the purpose of the registry? I think you kind of touched on that a little bit, where a physician might say, “I’d like to look at historical outcomes for a particular disease site.” But I guess, what’s the point of putting the patients on this registry trial?
Jillian Plochocki: Yeah. So essentially what we want to do is we want to observe the patient that’s getting treatment the way that they would normally get treatment at their cancer center, at the Proton Center. So again, going back to when you’re doing a clinical trial, you have really strict parameters that you’re trying to enforce and put on the patient in a clinical setting, which is great because we also want to do that side of things, too. But the reality of it is that sometimes in a clinical trial setting, you can’t always, or the patient doesn’t always fit necessarily in that box. Where in a registry setting, it’s a little more loose. The rules are loose.
Jillian Plochocki: We really just want to collect a standard data set on every single patient that’s enrolled in the registry and look at, okay, so this was the dose we gave, you know, this was, these are the follow-ups that we’ve had done, this is how long we have follow-up, these are the AEs that the patient experienced, or adverse events that the patient experienced, and look at them at a, as a larger cohort of patients. The beauty of the registry, too, is that obviously it spans across all of the United States, which is great because again, in a trial setting, sometimes you’re limited to certain demographics, a certain area, geographic area, if it’s just at one site. We’re enrolling from all over. So, we have all different demographics, so we can account for certain things that are always happening regardless of demographics and where patients are being treated.
David Raubach: So, you mentioned that there’s, well, there’s a patient component or a patient element to this. So, if I’m a patient, what should I expect if I’m going on this registry trial? Does it, what’s the patient responsibility, or what is the patient doing as part of this?
Jillian Plochocki: Yeah, so it’s actually pretty simple. So we do consent the patient to the registry so they’re informed on what data we’re collecting about them. All of their data is anonymized. So we don’t know them by name, we don’t know their address, etc. We know them by a number in a database, and so they agree to be a part of the registry, and essentially what we’re going to do is we’re going to follow them for as long as we can, annually. So, we do ask each of the training centers to do an annual follow-up with the patient. In our case, we just introduced a new mechanism of doing that.
Jillian Plochocki: Before, it was typically you’d come in for an appointment, you know, you talk to the nurse or the physician, we would look in the medical record and pull that information out. Sometimes it’s a phone call to the patient. We do have a new modality. We’ve been partnering with a really great company that does Vision Tree software. So, it’s part of Brainlab. And what we’re doing is essentially the patient is being consented to receive either an email or a text message at their annual, or anniversary, annual anniversary, to say, “Hey, can you fill out these couple questions? We just want to know what your disease status is and what your overall status is.”
Jillian Plochocki: And it gives us an idea years down the road, if they’re not coming in to their radiation oncologist or anyone else to get a follow-up, how they’re doing still. So, they get to self-report to us, which is really nice.
David Raubach: So really what the patient is committing to, they’re still getting the treatment that they would normally get.
Jillian Plochocki: Correct. Whatever the radiation oncologist prescribes.
David Raubach: Yes. And then they would really do the same follow-ups that they probably otherwise would, or probably the follow-ups that the physician would typically recommend for that particular patient.
Jillian Plochocki: Yes.
David Raubach: And then really what they’re agreeing to is to say, maybe I’ll fill out some paperwork. I’ll talk a bit about my experience, how I’m doing at each of those follow-up appointments.
Jillian Plochocki: Right. I’ll agree to do the follow-up appointments, and then all of that data goes into this big pool, or this big database.
David Raubach: Correct. But as you said, anonymized, correct?
Jillian Plochocki: And then that’s going to help further the field, give us a better understanding of outcomes for proton patients, side effects for proton patients, etc.
David Raubach: Right.
Jillian Plochocki: Yeah. It’s a little, I think being on the registry is a little less intimidating than committing to a clinical trial, because again, when you’re on a trial, you’re committing to a certain type of treatment, a certain way, and that’s what you’re agreeing to, and there’s no deviating from it unless there’s something, some reason to. So with the registry, it’s just, we just want to collect your data and we want to use it so that when patients come in a few years down the road, we somehow have better information and can better treat those patients so they have better outcomes.
David Raubach: So then how does that data get from a computer at a proton center to the public? How does it become useful? Walk us through that process.
Jillian Plochocki: Yeah, so I would say, you know, this is a great opportunity to give a shout out to the physicians that we work with. So we are a nonprofit organization, and we couldn’t do what we do without our physicians, and they are all volunteer, and they serve in a variety of capacities, from being board members to executive council members, but they also sit on our disease site committees and run our disease site committees, and they are also the people who are not only treating patients at their site, but they’re also pulling data from the database, analyzing it, and writing papers on it.
Jillian Plochocki: So really they’re the conduit to everything. They kind of have an idea or an inkling based off of what they’ve seen in clinic that maybe something needs to be looked at, and do a deeper dive into it, and then they request the data from the database. They look at it. We do have the ability to do stat support and analytics and also medical writing to help them along the way, but really they’re the ones that take the time and use their expertise and time to develop hopefully a wonderful paper that shows the benefit of proton therapy.
David Raubach: So you said that there are disease site panels. What are the different disease site panels that exist with PCG?
Jillian Plochocki: Yeah, so we have 10 different ones. I won’t go through the whole list, but you can take a look on our website to look at the list. But for example, we have a really, really active lymphoma committee. Okay. Dr. Yolanda Sang from UW up in Seattle, she’s the one who runs it. And they typically meet twice a year, sometimes three or four times a year, depending on the projects. But it’s the same premise for all of us, our, all of our disease site committees, they’re really looking at special projects related to that particular disease site.
Jillian Plochocki: So if there’s something that they’re seeing in clinic that maybe would be interesting to look at, they’ll pull data from the database and look at it and see if it’s something that needs to be developed maybe into a trial concept. Also the disease committees do help us create trial concepts. So typically once or twice a year we’ll do a call for concepts to introduce new clinical trials. We do have eight trials in our portfolio, just as an FYI. It’s not really what we’re known for, but we think it’s an important part of our portfolio. So there, the disease site committee serve in that capacity too. They’ll develop concepts, submit them for the call for, during the call for concepts process. They really, they do, they use their expertise to help us figure out what the data in the database means, essentially.
David Raubach: So you mentioned that you have eight clinical trials that are run through PCG. Give me an example of what a proton therapy clinical trial looks like. What’s it like? What’s a trial that you guys have open right now?
Jillian Plochocki: Yeah, so we have our, one of our newest trials is our Breast09 trial. Like I said, we have eight total. There’s a couple of them that are closed right now to enrollment, but they’re still doing follow-up. So, those will come hopefully in the next couple years, you’ll see some publications on that. But our newest one is our Breast09 trial. Dr. Isabelle Choy from the New York Proton Center is the PI for that. And essentially it’s looking at comparing patients that are treated with hypofractionated proton therapy versus conventional, and just kind of looking at different, I guess, higher than grade three toxicities when it comes to skin type of issues and other adverse events.
Jillian Plochocki: So, it’s something like that, where we’re looking at, you know, how do we, if we’re going to hypofractionate, meaning we’re treating at a higher dose for a lesser period of time, how does that impact the patient long term? And the hope is to find that maybe it’s better in some regards, maybe not. And how do we make sure that if it’s not, we correct those? And if it is, how do we make this a standard of care for patients moving forward so they don’t have to come for radiation for several weeks?
David Raubach: So, I’m glad you just described that, because one of the questions that we get asked by patients is, why am I getting the number of treatments that I’m getting?
Jillian Plochocki: Yes.
David Raubach: And I think it’s helpful for patients to understand that there’s this whole history. We’ve been using radiation for over a hundred years to treat patients. We’ve been using protons to treat patients since 1954. And so where we’re at today is in large part because of trials like you just described, where we’re comparing, well, we’re going to do this higher dose and this lower dose, and we’re going to compare the outcomes, disease control and side effects. It’s a lot of times what we’re looking at is disease control and side effects, right? Or we’re going to deliver, like prostate as an example, we’re going to do 40 treatments versus 29 treatments, or 29 treatments versus five treatments, right? Compare the outcomes. And so that’s, and so it’s really your group that’s helping facilitate those types of trials, for sure.
Jillian Plochocki: And I’m super proud to say that that is something that we’re working on. And I always try to remind patients, you know, my background is psychosocial oncology, so I spent many years in my early career dealing with kind of being in the dark with the patients that are newly diagnosed. And, you know, one of the things that always was difficult for me was how it feels like sometimes we’re not further along, or we’re not as far along as we hope to be with cancer treatment and saving lives, essentially.
Jillian Plochocki: And I know that we’ve come a long way, but I think it’s important to remind patients that there is so much research going on behind the scenes, and it, it does take time, you know. We want to follow you for years because that’s really the basis of everything, right? If we can do a treatment and we know that 10 years down the line, you’re still doing good and you haven’t experienced any long-term side effects, that’s what we want to do, right? So, this research can’t be done in a year or two. It takes time, and so it feels very slow sometimes, but it’s also why it’s really important that people agree to be part of trials or registry, because we want to look at that data.
David Raubach: I think at the Oklahoma Proton Center, our accrual, it’s over 90% of patients, it might be over 95% of patients, that participate in the registry. So we emphasize the importance of it to our patients. I know a lot of other proton centers do as well.
Jillian Plochocki: Yeah. Well, and you guys are definitely, I mean, we know the Oklahoma Proton Center is one of the OGs of PCG, right? So you guys were the original, and essentially we were, you were, and like you, we were established because of your opening, which is really fun. And that was back in 2009. But I think you guys are one of our highest enrollers, and you’ve seen and treated lots of patients, almost all of whom are on the registry, which is great.
David Raubach: So tell me a little bit more about that history, because you mentioned that PCG started in 2009, and there is this connection to the Oklahoma Proton Center, of course, at the time it was the ProCure Proton Therapy Center.
Jillian Plochocki: Correct.
David Raubach: So, what’s the history of PCG?
Jillian Plochocki: Yeah. So, essentially this was before my time, my pre-PCG time, but from what I’ve been told, or the stories that have come my way, you know, essentially we were established in 2009 to establish some sort of research, I guess, continuum, or program. Knowing that this is a newer modality at that time, and that it’s not widely available, and also knowing that insurances may or may not cover it, right? We’ll be honest, that’s part of the reason, one of the reasons why PCG was established was we want to show that there’s a benefit, and how do we do that?
Jillian Plochocki: And so, ProCure was definitely wise enough and had enough forethought, and was progressive enough to realize, well, we can probably launch something research-based here. And it was from that point that we started to grow. So initially our sites were just, were just ProCure-focused sites, and then as other centers started getting built and they weren’t necessarily ProCure, we kind of revamped and ultimately became an independent entity. So that is what we are. We’re an independent 501(c)(3). We’re based in the Chicagoland area, and now we’re up to 31 centers, almost 33 centers in the next year, which is really wonderful.
David Raubach: So, that you bring up a good point, that at that time when PCG was founded in 2009, and it was founded around the opening of the proton center in Oklahoma City, that center in Oklahoma City was just the sixth proton center in the country.
Jillian Plochocki: Correct.
David Raubach: And the five that were open before that were academic institutions, and so they had their own internal infrastructure where they were doing research and data collection. And so when ProCure opened, and it was a partnership with a local hospital system, and so it wasn’t an academic facility, right? There needed to be this new infrastructure created in order to gather data. And I worked at the Proton Center in Oklahoma City back when it first opened, and I used to tell people that we were a private facility, but we had this academic focus.
Jillian Plochocki: Yes.
David Raubach: In terms of gathering data, which, as you mentioned, is important for getting insurance companies to pay for treatment. It’s also important for moving the field forward, and we also wanted to know that what we were doing at the facility was working, like, patients want to know that those outcomes are important. So, I want to switch gears just a little bit. You mentioned that you have a background in, what, how did you, what did you say?
Jillian Plochocki: So, psychosocial oncology.
David Raubach: Psychosocial oncology. So what is that? Tell us a little bit about Jill, the history of Jill.
Jillian Plochocki: Yeah. So it’s funny, I always laugh when I say how I got into the field of oncology. At the time I did not have any, you know, impact of cancer in my family. And this is going back a million years ago, because I’m old now. But I’ve been in the field for about 20 years, which is crazy to say, but yeah, I mean, I think I started in oncology at the American Cancer Society. I literally opened up the newspaper in Chicago at that time, and that’s how you found jobs, was listings in the newspaper. That’s how old school we are.
Jillian Plochocki: And yeah, I found my first job there. I did a lot of program development for patients, and that’s how I got my first sort of taste of psychosocial oncology. It was, you know, on the clinical side, it’s obviously very important, we want to treat patients to make sure we can get rid of the cancer. But then there’s this whole other psychological component of a cancer diagnosis, and it’s not just focused on the patient, but it’s also focused on the family and the friends around them.
Jillian Plochocki: And there is significant research that shows that there is a detrimental impact if you have negative psychosocial, a negative psychosocial stance when you’re going through cancer, your outcomes are not as good. And so I moved from ACS to a private facility that did free psychosocial programs just outside of Chicago. So we’re talking about things like yoga classes, nutrition classes, cooking classes, support groups, individual counseling, etc. And it was a really, it’s a really great way to serve the community and fill the gap for the psychosocial needs of the patients and their families so that they can get through that process.
Jillian Plochocki: And ultimately, if you’re in a good mindset, the thought is that your outcomes, your clinical outcomes will be better. And that’s been shown in research, that that’s the case. So that’s my background. And when I had decided, you know, I kind of wanted to change things up a little bit. I had been in that field for a long time, and it can be a little bit heavy. You know, you see patients going through a lot, and you know, you’re in the muck with them, essentially.
Jillian Plochocki: And so I wanted to change gears, because I felt like, you know, I, research, I know there was a lot of research going on behind the scenes, but again, you feel like, why are we not moving fast enough? And then you get into research and you realize, oh, this is why it doesn’t go quick, because research is not a quick thing. And that’s how I kind of became aware of PCG and ended up, you know, 10 years ago, coming over to this side of things, and it’s been, it’s been a journey, that’s for sure. And we’ve come a long way since then.
David Raubach: So when you started, how many centers were part of PCG?
Jillian Plochocki: Yeah, so we had six, and we had 7,000 patients at that point enrolled, and now we’re almost at 41,000 patients in 31 centers.
David Raubach: Yeah, that’s amazing. So what did you know about proton therapy before you joined PCG?
Jillian Plochocki: You know, luckily I knew a little bit. Certainly I would need a couple of books on, like, Cliff Notes for physics and Cliff Notes for dosimetry, but I knew a little bit only because, again, I was dealing with patients who had needs, and their needs were sometimes caused by side effects from radiation therapy, chemotherapy, etc. So I’m one that likes to constantly learn. So anytime I would come across a patient with a new diagnosis, or a new side effect, or new treatment, I would read about it and learn as much as I could. So I came in knowing enough to be dangerous, and clearly now I know a lot more.
David Raubach: Yeah. So, patients, kind of going back to your psychosocial background, a patient has just been diagnosed with cancer. There’s kind of this obvious step of, well, I have to talk to an oncologist, I have to figure out the treatment plan. What are you telling patients? And I’m sure you’ve had people, even today, ask you, you know, you work in oncology, but how do I even start the process of this mental health component, or psychosocial component, of the journey?
Jillian Plochocki: Yeah, it’s really difficult. I think that it’s that initial, the initial words of “you have cancer” and what this all means. I think what comes after “you have cancer” becomes a blur. And I always tell patients, number one, you need to always have somebody with you when you’re in those appointments, because I do feel like you’re hearing part of it, and then at some point it’s kind of like you’re numb to it. And so you need someone who can be the note-taker, the voice of reason, the person that can ask questions.
Jillian Plochocki: One of the other things that was always like a must-do is, you know, go home after you’ve gotten the news and you’re trying to get your bearings, and just write down everything you’re thinking, what questions you have, what things you’re worried about, because if you bring that back to the physician, typically most places now, if they’re accredited in any capacity, they have social work support and psychosocial support on site.
Jillian Plochocki: And the more that we know about what you’re worried about, or what you’re thinking about, or what’s a concern, the more we can identify and tailor whatever it is, support that you might need. I know distress screening was a very big thing. It still happens regularly in cancer centers. You know, if you’re COC accredited, that’s a requirement, that every patient has to, every so often, go through a distress screening process to see what your distress level is.
Jillian Plochocki: And then from there, most of the time those teams are prompted, like, if you score a six, then you’re going to get a social work consult automatically. Okay. If you have, if you’re losing weight, if you’re, you know, not able to eat, you’re going to get a nutrition consult. So, it’s just kind of being there to support the patient and write it all down as it comes up. It might be 3:00 in the morning and you might go, “Oh my gosh, how am I going to get to treatment because I have nobody to drive me?” Write it down and ask the question.
David Raubach: Yeah. And there’s a lot of resources, I think, available today, probably even more so than when you were working 15 or 20 years ago.
Jillian Plochocki: Yeah, I’d agree.
David Raubach: So, what are some of the organizations? You mentioned American Cancer Society, but I guess, let’s take the Chicago area, what are some other examples?
Jillian Plochocki: Yeah, so I mean, ACS was one that we used quite a bit. There’s there’s a really nice cohort of cancer resource centers in the Chicagoland area. Gilda’s Club is probably the more well-known one in the city of Chicago. Living Well Cancer Resource Center is based out in Geneva, which is the one that I worked at, and there’s several like that that are based in other suburbs in Chicago. So, you have to look for them. There’s one in Homewood. There used to be one up in Palatine, but then they combined with one in Northbrook, so there’s one up that way.
Jillian Plochocki: You know, again, I think if you look, for most hospitals have support groups going on, most hospitals have social workers that you can chat with. So, I think, again, if you just don’t be afraid to ask for what you need, for, or to tell someone what you’re worried about, because there’s a high probability that there’s a resource out there for it, and it’s overwhelming to have to search for it on your own. So just, again, write it down and ask the questions, especially, you know, your, you can ask your physician. I feel like our nurses are our best friends, right? They spend more time with us. So the nurses are always super helpful and we’ll guide you in the right direction.
David Raubach: So, I want to shift back to PCG for a couple questions. So what are your goals then for PCG going forward? I mean, obviously you’ve had a lot of growth in terms of patients accrued and centers joining PCG, what are you hoping to see happen in ’26 and ’27?
Jillian Plochocki: Yeah, so I think a couple of things. So one for sure is we always are looking to increase publications. So for us that looks a little bit like enhancing data quality, you know, again, when you’re collecting that much data it can be difficult sometimes, and making sure that the sites have the resources to enter the data properly. It is definitely a lot of work on the staff side of things. So enhancing data quality, bringing more publications into print, which would be really great.
Jillian Plochocki: One of the other things that we’ve talked about is doing things a little more automated for patients. So, we’re introducing that follow-up program where you’ll get a text message, you fill out the form, it goes into our database, it takes all of five minutes, and that’s it. So, that the site is not having to do that, and it’s not a burden on the patient to do it. So that’s already been taken care of.
Jillian Plochocki: We’ve been looking a little bit at, you know, introducing AI into our database, and what that potentially looks like, what the caveats are. So I would like to, in the next couple years, hopefully be able to do that and have AI sort of work the data for us and see what it can find, and what maybe it’ll prompt us into other things we need to be looking at that we’re not seeing from the human side.
David Raubach: So, who are some of the people that have been really helpful for you over the past 10 years with PCG? This is an opportunity to name-drop or give credit.
Jillian Plochocki: I always hate it when people do that to me and put me on the spot, ’cause I’m like, I’m going to forget somebody, and then I’m going to remember at 3:00 in the morning and wish I said it. But yeah, that’s okay.
David Raubach: Nonetheless, who are some of the kind of key people that have helped move PCG forward, besides you, of course?
Jillian Plochocki: Yeah, this is, I mean, this is always a hard one, because I feel like if you’ve worked in oncology, and certainly if you’ve worked in radiation oncology, we’re such a tight-knit group of people and it is a very small world. I feel like there’s, we’re always rowing in the same direction, and I’ve never come across anybody that I’ve interacted with that has not been going in the same direction as me, and we’re all kind of like mission-focused and focused on, let’s do what is best for the patient and get them the best care.
Jillian Plochocki: I mean, I’ll compliment you, I feel like it’s always enjoyable to see you, and you’re inspirational to me, David, because I feel like you have your hands in a lot of things, and all of it is to make the patient experience better, to make awareness of proton therapy, even oncology care in general. So, I thank you for that, and it’s always a pleasure talking with you regardless.
Jillian Plochocki: But, I would also say, you know, I’ll give a shout out to one of my old board members, Dr. Bill Hartzell, who is not practicing in protons right now, which is unfortunate because I miss him dearly, but I knew him through my ACS days early in my career, and he was one of the reasons why I got the job at PCG. He interviewed me and he gave me a chance, and it just, it changed everything for me. I think that working in this field is super impactful, and I’ve always said, you know, I’m a working mom, and if I was going to take time away from my family, it had to be for meaningful work, and I can’t imagine doing anything else.
David Raubach: So, I’m glad you brought up Dr. Hartzell, because I know Dr. Hartzell as well. He was the founding medical director of the Proton, the ProCure Proton Therapy Center in Chicago, which was the second ProCure Center, and worked there for many, many, many years. And he’s actually probably the reason that we have Dr. John Chang, who was at Chicago as the medical director, in Oklahoma City.
Jillian Plochocki: Yes.
David Raubach: Because Dr. Chang wanted to be a medical director, and Dr. Hartzell had that role locked down there in Chicago. And so Dr. Chang had the opportunity to come and help us out in Oklahoma, and he’s been fantastic.
Jillian Plochocki: We’re happy to share.
David Raubach: Yeah, exactly. And I also appreciate Dr. Hartzell because he’s a University of Oklahoma grad and a big Oklahoma football fan.
Jillian Plochocki: Yes, he is.
David Raubach: So, near and dear to my heart.
Jillian Plochocki: But I agree, he’s had a kind of a profound impact on the proton community, and definitely PCG. He’s a really good example of just, again, how all of our physicians are, they just have, they’re on this mission to make sure that their patients are getting the best care. And for them, that’s all it’s about. It’s not about anything else. It’s really just about the patient. And I don’t feel like you find that in other areas of medicine.
David Raubach: Yeah. So talk a little bit about the diversity of the membership within PCG, because me coming from the lay person side, of course I’ve been in oncology for a long time now, but before that I kind of always just imagined that, you know, the research was done at MD Anderson or Mayo Clinic, which is true, obviously they’re doing a lot of research, but I think part of what’s neat about PCG is that you have a lot of different types of centers that are participating.
Jillian Plochocki: Yeah, we do. We have a variety. So, obviously we have centers that are academically based, which, you know, typically, again, that’s the thought, is that they’re only doing research there. But that’s not true. So, we have single standalone centers down in Florida. And then we have other centers, like Oklahoma, where, you guys, I mean, again, you guys are standalone, you’re a larger center, not necessarily a single-room center. So, it’s a variety.
Jillian Plochocki: Now, with that also comes, there’s a variety of resources at those sites. So, we do have to work kind of a little bit differently with each of you. And that’s one of the things that I do take pride in, you know, all of the staff that works at PCG, we all, they all came from being in a research position. So, they know what it feels like to be the research coordinator at the site.
David Raubach: Yeah.
Jillian Plochocki: And we’re very mindful of the workload, how we present the workload to them, and how we train them and support them in doing the workload. It’s an unusual type of way to be a sponsor for a trial or a registry. Normally when you’re doing that with pharma companies, it’s kind of like they expect that you know what’s going on and you just do it and you don’t ask any questions. And for us, we do take more time to mentor our coordinating staff and our research staff. So, you know, we’re very aware of that kind of thing. But it’s such a great relationship, and I think that it seems like all of our centers are very open to asking questions. There’s open communication both ways.
David Raubach: Yeah.
Jillian Plochocki: It doesn’t feel like your typical sponsor-client relationship, which is nice.
David Raubach: So, you guys take a very hands-on approach, and part of the reason for that is that you want to have good quality data. So there’s, you know, there’s the adage, garbage in, garbage out.
Jillian Plochocki: Correct. Good data in, good data out.
David Raubach: So talk a little bit about that QA process. Why should somebody reading a publication that comes out of a PCG study, or PCG data pool, have confidence that that’s good, reliable information?
Jillian Plochocki: Yeah. So there’s a couple of layers to our data QA process. So essentially, there’s obviously requirements for what needs to get put into the database. Once everything is in the database, it is then audited. We don’t audit every single data point, because again, it’s 40,000 patients’ worth of data. But typically we do a little bit more focus on any new sites that are enrolling, just to make sure that they’re putting in what they’re supposed to, that there’s no mistakes being made potentially, or identifying mistakes and pointing them out so that they don’t get too far along in the process and they’re making the same mistakes.
Jillian Plochocki: There’s lots of training on the front end for the staff, just, you know, to kind of go through, like, where you’re enrolling patients, which arm, which disease site is applicable. And there’s lots of back-and-forth questions throughout as they’re enrolling, if they have questions, they can ask our team and say, “Okay, this patient has this diagnosis, which arm should I enroll them in? Even though it’s this body part, but it could be this other type of cancer,” etc. So it goes through an initial audit process.
Jillian Plochocki: The other thing we do is we do verify source documents. So again, it’s all sort of like a random pick, based off of your site’s performance. So if you’re a newer site, we’ll probably pick you more often to show us the actual lab reports for a lab value that’s in the system, just to make sure that things look the way that they’re supposed to. And we do that randomly throughout all of it. There is a set schedule for that throughout the year, because again, what we want to try to do is control how much we’re asking the site to QA the data, because it’s overwhelming.
Jillian Plochocki: Again, they’re not only having to enter all the data, but now we’re going back to them to say, “Okay, we want to double check to make sure that this data is correct.” So, it’s all on a very specific schedule. The other thing, the other layer to it, is if there is a data use request. So, if a physician says, “Hey, I want all the breast data for this particular diagnosis,” and say there’s 2,000 cases, we will comb through that one to make sure that it’s all complete, there’s nothing blank.
Jillian Plochocki: And if there is, we’ll go back to the site and say, “Hey, you know, this has been requested by this physician to look at, we need you to fill in all these blanks.” Or if there’s anything that looks questionable, where, you know, maybe this value seems like it wouldn’t be a normal lab value, we’ll go back and say, “This looks off, can you rectify that?” So, that’s kind of like the part two process of the data.
Jillian Plochocki: And then it goes off to the PI typically, and the PIs are really good, they’re all physicians, they’re radiation oncologists, they know if something doesn’t quite seem right, or if maybe, you know, something was put in that could be right, but maybe doesn’t seem like it should be right, and they’ll bring our attention to it, and then we just go back to the site and correct it, and then it’s fine.
Jillian Plochocki: Yeah.
David Raubach: No, that, I like the way you describe that, there being multiple layers. There’s kind of multiple eyes on the data. There’s multiple points in time, or points in that assessment, where you’re checking to ensure that the data is accurate, or seems like it’s accurate.
Jillian Plochocki: Yeah.
David Raubach: So, my last couple questions for you, Jillian, what are you most proud of over the past 10 years? I mean, you mentioned some statistics around accrual and growth of PCG. Is there anything that, kind of, personally, you’re very proud of?
Jillian Plochocki: Yeah, I would say, you know, the first thing that, there’s a lot, but the first thing that comes to mind actually is my staff. And I think the way that my staff operates with the site staff, you know, again, we’re an unusual type of sponsor where we are very supportive. We do not, you know, put the hammer down on anybody. And I think we’re good at hand-holding, and we’re good at explaining things, and we’re good at having empathy and understanding for the research staff on site, because doing research is hard. It’s a lot to keep track of. It’s a lot of manual work when you’re entering into a database. I mean, they’re literally taking medical information from the EMR and typing it into our database.
David Raubach: Yeah.
Jillian Plochocki: So, it’s a lot of work, and I think we really, it resonates with us. We understand what that is like and how much of a burden it can be at times, and how overwhelming it can be at times. And so, I think, you know, my team, they’re the most gracious, empathetic, kind people that you will ever encounter. They’re wonderful.
David Raubach: Yeah. And, to my last question, what motivates you? Why do you do what you do?
Jillian Plochocki: Yeah. You know, again, I think it goes back to, you know, when you’re in college, even high school, you kind of know what you want to do. And it’s funny, when you graduate and you come out and you get your first job, and it’s like not at all what you thought it was going to be, and not necessarily what you went to school for. And my mantra was always, if, again, if I was going to work full-time in a job, it needed to be something that was meaningful, especially because I do have a family, I do have kids.
Jillian Plochocki: And I can’t imagine doing anything other than working in oncology. Before I came to PCG, I thought maybe I would take a break from it, because it is heavy at times. And, you know, I took a break for a few months and I realized, like, this is where I belong. And people will often say, I’m sure you get this too, where it’s like, “I don’t know how you work in oncology, it seems like it would be so depressing.”
Jillian Plochocki: And my thought is always like, somebody has to do this work, and all of the patients are relying on us to help them. And I can’t go to bed at night without having participated in that in some capacity, it just doesn’t feel good. And I want to, I truly want to make an impact, and this is how I’m doing it.
David Raubach: Yeah. Well, that’s amazing, you are making an impact.
Jillian Plochocki: Thank you. PCG is making an impact.
David Raubach: You’ve done a fantastic job.
Jillian Plochocki: Thank you. Thank you so much for your time.
David Raubach: Yeah, this was great. My pleasure. It’s great to see you.
Jillian Plochocki: You, too. Thank you.
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