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
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. 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. 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 house walk in Mesta Park. I have a lovely old home back in the Chicago area, so it was nice to see something similar and how they decorated — and more importantly the renovations, which were beautiful. I love it. And 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: Good! Well, we’re hoping to have a six-year or eight-year run like the Bulls back in the ’90s. So — tell us what the Proton Collaborative Group is.
Jillian Plochocki: Yeah. So essentially we’re a wonderful group of people in the proton therapy field that have banded together to further proton therapy and access to proton therapy for patients. We do that in the form of clinical trials and, more importantly, the registry — that’s probably what we’re more well known for. It’s a way for all of us to band resources and knowledge and move the field of proton therapy further along. The saying goes that you can do more together than you can alone, and that’s our mantra.
David Raubach: You mentioned the registry. What do you mean by that? What is a proton registry?
Jillian Plochocki: Yeah. So when you’re looking at doing any type of research, you have clinical trials, which most people are probably familiar with — but for us we focus a lot of our efforts on hosting a proton therapy–specific registry. It’s observational, meaning we’re collecting data that is happening in the clinic in real time, as opposed to a clinical trial where you’re putting strict parameters on exactly what you’re doing. 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. We are the largest proton therapy registry in the world, which is something I’m very proud of.
David Raubach: Give us a sense of that scale. You said it’s the largest registry in the world — in terms of number of patients enrolled or number of centers?
Jillian Plochocki: So we have 31 centers right now that are part of PCG, with 32 and 33 in the pipeline — you’ll probably hear more about those two in 2026 and 2027. Over 40,000 patients who have been treated with proton therapy are enrolled on the registry, which is obviously a gold mine of information. And a little over 40 to 45 different disease sites are represented, which is also great. We typically send our sites a monthly report so that the PIs and physicians can see — oh, we have 3,000 head and neck cases, is there something specific I want to look at in depth for those patients?
David Raubach: What is the purpose of the registry? What’s the point of putting patients on this registry trial?
Jillian Plochocki: What we want to do is observe the patient getting treatment the way they would normally get it at their proton center. In a clinical trial setting you have really strict parameters — and sometimes a patient doesn’t fit in that box. In a registry setting the rules are loose. We want to collect a standard data set on every enrolled patient: the dose, the follow-ups, how long we have follow-up, the adverse events. The beauty of the registry is it spans across all of the United States, so we have all different demographics, and we can account for certain things that are happening regardless of where patients are being treated.
David Raubach: If I’m a patient, what should I expect if I’m going on this registry trial? What is the patient doing as part of this?
Jillian Plochocki: It’s actually pretty simple. We do consent the patient to the registry so they’re informed on what data we’re collecting. All of their data is anonymized — we don’t know them by name or address; we know them by a number in a database. Essentially what we’re going to do is follow them for as long as we can, annually. We ask each treating center to do an annual follow-up. We’ve recently introduced a new mechanism through a partnership with Vision Tree software, which is part of Brain Lab. The patient receives either an email or a text message on their annual anniversary asking a couple of questions: what is your disease status, and what is your overall status? It gives us an idea years down the road how they’re doing even if they’re not coming in to their radiation oncologist.
David Raubach: So the patient is still getting the treatment they would normally get — whatever the radiation oncologist prescribes — and doing the same follow-ups the physician would typically recommend. What they’re really agreeing to is filling out some paperwork, talking about their experience, and allowing all of that data to go into this big anonymized database that will help further the field?
Jillian Plochocki: Right. Being on the registry is a little less intimidating than committing to a clinical trial, because on a trial you’re committing to a certain type of treatment a certain way and there’s no deviating from it. With the registry, we just want to collect your data and use it so that when patients come in a few years down the road we have better information and can better treat those patients so they have better outcomes.
David Raubach: How does that data get from a computer at a proton center to the public? How does it become useful?
Jillian Plochocki: This is a great opportunity to give a shout-out to the physicians we work with. We’re a nonprofit and we couldn’t do what we do without our physicians — they are all volunteer. They serve in a variety of capacities: board members, executive council members, disease-site committee leads. They’re not only treating patients at their site but also pulling data from the database, analyzing it, and writing papers. They’re the conduit to everything. They have an inkling based on what they’ve seen in clinic that something needs to be looked at, they request the data, and we have the ability to provide statistical support, analytics, and medical writing to help them along the way.
David Raubach: You said there are disease-site panels. What are the different disease-site panels within PCG?
Jillian Plochocki: We have 10 different ones — you can take a look on our website for the full list. For example, we have a really active lymphoma committee. Dr. Yolanda Sang from UW up in Seattle runs it. They typically meet two to four times a year depending on projects. All of our disease-site committees are looking at special projects related to that particular disease site, and they also help us create trial concepts. We do a call for concepts once or twice a year to introduce new clinical trials — we have eight trials in our portfolio as an FYI, though that’s not really what we’re known for.
David Raubach: You mentioned eight clinical trials run through PCG. Give me an example of what a proton therapy clinical trial looks like — one that you have open right now.
Jillian Plochocki: One of our newest trials is our Breast09 trial. Dr. Isabelle Choy from the New York Proton Center is the PI. Essentially it’s looking at comparing patients treated with hypofractionated proton therapy versus conventional treatment and looking at higher-than-grade-three toxicities like skin issues and other adverse events. So we’re asking: if we’re going to hypofractionate — treating at a higher dose for a lesser period of time — how does that impact the patient long term? The hope is to find that maybe it’s better in some regards and, if so, how do we make this a standard of care so patients don’t have to come in for radiation for several weeks?
David Raubach: I’m glad you described that because one of the questions we get asked by patients is: why am I getting the number of treatments that I’m getting? We’ve been using radiation for over a hundred years, and protons since 1954. Where we’re at today is in large part because of trials like the one you just described — comparing higher doses against lower doses, comparing 40 treatments versus 29 versus five, and looking at disease control and side effects. And it’s really your group that is helping facilitate those types of trials.
Jillian Plochocki: For sure, and I’m super proud to say that. My background is psychosocial oncology, so I spent many years in my early career in the dark with newly diagnosed patients, and it always felt like we weren’t as far along as we hoped to be with cancer treatment. But there is so much research going on behind the scenes and it does take time. If we can do a treatment and know that ten years down the line you’re still doing well and haven’t experienced long-term side effects — that’s what we want. This research can’t be done in a year or two. It feels slow, but it’s exactly why it’s important that people agree to be part of trials or registry.
David Raubach: At the Oklahoma Proton Center we enroll over 90% — maybe over 95% — of our patients on the registry. We emphasize the importance of it to our patients, and I know a lot of other proton centers do as well.
Jillian Plochocki: Well, you guys are definitely one of the OGs of PCG. You were essentially the reason we were established — back in 2009 — and you are one of our highest enrollers. You’ve treated lots of patients, almost all of whom are on the registry, which is great.
David Raubach: Tell me a little more about that history. You mentioned PCG started in 2009 and there is a connection to the Oklahoma Proton Center — at the time it was the Procure Proton Therapy Center. What’s the history of PCG?
Jillian Plochocki: This was before my PCG time, but from what I’ve been told, we were established in 2009 to build some sort of research continuum. Proton therapy was a newer modality and insurance may or may not cover it. One of the reasons PCG was established was to show that there’s a benefit — and how do you do that? Procure was progressive enough to realize we could launch something research-based here. Initially our sites were just Procure-focused centers, and then as other centers got built and weren’t necessarily Procure, we revamped and became an independent entity — an independent 501(c)3 based in the Chicagoland area. Now we’re up to 31 centers, almost 33 in the next year.
David Raubach: That center in Oklahoma City was just the sixth proton center in the country when PCG was founded. The five before it were academic institutions with their own internal research infrastructure. When Procure opened as a partnership with a local hospital system — not an academic facility — there needed to be new infrastructure created in order to gather data. I used to tell people we were a private facility with an academic focus, in terms of gathering data for insurance coverage and for moving the field forward.
David Raubach: I want to switch gears. You mentioned a background in psychosocial oncology. Tell us a little about the history of Jill.
Jillian Plochocki: I always laugh when I say how I got into oncology — at the time I didn’t have any personal impact of cancer in my family. I’ve been in the field for about 20 years. I started at the American Cancer Society in Chicago — I literally opened up the newspaper and found my first job there. I did a lot of program development for patients and got my first taste of psychosocial oncology. On the clinical side we obviously want to treat patients to get rid of the cancer, but there’s this whole other psychological component — and it’s not just for the patient but for the family and friends around them. Research shows that a negative psychosocial stance during cancer correlates with worse outcomes. So I moved from ACS to a private facility just outside Chicago that ran free psychosocial programs: yoga classes, nutrition classes, cooking classes, support groups, individual counseling, and more. If you’re in a good mindset, the thought — supported by research — is that your clinical outcomes will be better.
David Raubach: A patient has just been diagnosed. How do you even start the process of the mental health or psychosocial component of the journey?
Jillian Plochocki: It’s really difficult. Those initial words — “you have cancer” — and everything that comes after becomes a blur. I always tell patients: number one, you need to always have somebody with you in those appointments, because at some point you become numb and you need someone who can be the note-taker, the voice of reason, the person who can ask questions. Another must is to go home after you’ve gotten the news and write down everything you’re thinking — every question, everything you’re worried about — because if you bring that back to the physician, most accredited places now have social work and psychosocial support on site. Distress screening is a big thing: if you’re COC accredited, every patient has to go through a distress screening process periodically. If you score a six, you get a social work consult automatically. If you’re losing weight or not able to eat, you get a nutrition consult.
David Raubach: What are some of the psychosocial organizations available in, say, the Chicago area?
Jillian Plochocki: ACS was one we used quite a bit. 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 — that’s the one I worked at — and there are several like it in other suburbs. There’s one in Homewood, one that combined with a Northbrook location, and so on. Most hospitals also have support groups and social workers. The point is: don’t be afraid to ask for what you need. If you write it down and ask the question — even at 3 a.m. when you realize you have nobody to drive you to treatment — there’s a high probability there’s a resource out there for it. Your nurses are your best friends in that regard; they spend more time with you than anyone and will guide you in the right direction.
David Raubach: I want to shift back to PCG for a couple of questions. What are your goals for PCG going forward — what are you hoping to see happen in 2026 and 2027?
Jillian Plochocki: A couple of things. First, we’re always looking to increase publications, and that starts with enhancing data quality. When you’re collecting that much data it can be difficult, so making sure sites have the resources to enter it properly is key. We’re also introducing more automation for patients through the Vision Tree text and email follow-up tool. And we’ve been exploring how to introduce AI into our database — what that potentially looks like, what the caveats are. I would love in the next couple of years to have AI work the data for us and see what it can find, because it may prompt us into looking at things we’re not seeing from the human side.
David Raubach: Who are some of the people who have been really helpful to you over the past ten years with PCG? This is your opportunity to name-drop or give credit.
Jillian Plochocki: If you’ve worked in radiation oncology, we’re such a tight-knit group and it is a very small world. I feel like everyone I’ve interacted with has been rowing in the same direction — mission-focused on doing what is best for the patient. I’ll compliment you, David, because you have your hands in a lot of things and all of it is to make the patient experience better and raise awareness of proton therapy and oncology care in general. But I would give a special shout-out to former board member Dr. Bill Hartzell. I knew him through my ACS days early in my career; he was one of the reasons I got the job at PCG. He interviewed me, he gave me a chance, and it just changed everything for me.
David Raubach: I know Dr. Hartzell as well. He was the founding medical director of the Procure Proton Therapy Center in Chicago — the second Procure center — and worked there for many years. He’s actually probably the reason we have Dr. John Chang as medical director in Oklahoma City, because Dr. Chang wanted to be a medical director and Dr. Hartzell had that role locked down in Chicago. Dr. Hartzell is also a University of Oklahoma grad and a big Oklahoma football fan, which is near and dear to my heart.
Jillian Plochocki: He’s a really good example of how all of our physicians operate — they are on a mission to make sure patients get the best care, and that’s all it’s about. I don’t feel like you find that in other areas of medicine.
David Raubach: What are you most proud of over the past ten years?
Jillian Plochocki: The first thing that comes to mind is my staff. The way they operate with the site staff is unusual for a registry sponsor. We don’t put the hammer down on anybody. We’re good at hand-holding, at explaining things, and at having empathy for the research staff on site, because doing research is hard. They are literally taking medical information from the EMR and typing it into our database — it’s a lot of manual work. My team are the most gracious, empathetic, kind people you will ever encounter, and I’m proud of that.
David Raubach: Last question: what motivates you? Why do you do what you do?
Jillian Plochocki: It goes back to knowing that if I was going to work full-time and take time away from my family, it had to be for meaningful work. 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 can be heavy at times. I took a break for a few months and realized this is where I belong. People will often say, “I don’t know how you work in oncology — it seems so depressing.” And my thought is always: somebody has to do this work, and all of the patients are relying on us to help them. I can’t go to bed at night without having participated in that in some capacity. I truly want to make an impact, and this is how I’m doing it.
David Raubach: Well, that’s amazing. You are making an impact. PCG is making an impact. You’ve done a fantastic job. Thank you so much for your time.
Jillian Plochocki: My pleasure. This was great. It’s great to see you, too.
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