“To be remarkable in this field, to do what we do, you have to do it with heart and passion.”
Supporting clients and advocating for patients as a member of our global project management team, Brittany Haltzman-Cassenti is passionate about supporting patients with the utmost degree of care and attention throughout their clinical trial journey.
Brittany joined us two and a half years ago as a project manager, and since then has become an integral part of the mdgroup heart. We spoke to her about her passion for her job, the stand-out patient experiences she’s been part of, the challenges the pandemic created for patient care, and more.
What are your main roles and responsibilities at mdgroup?
Right now I’m managing around 20 projects with several clients. I’m the liaison between our internal teams and clients, my role is hands-on, and I get the opportunity to engage with patients on our more complex trials as well as supporting our other project managers.
For example, our gene therapy trials have complicated protocols and can extend far past the one-day visits that some others require – so we have to source long term accommodation and care for patients. On the mobile health side, I do a lot of client engagement as well as liaison with our clinical managers and project coordinators.
What’s involved in facilitating higher levels of patient care in complex trials?
In a couple of the trials I’m working on, patients are required onsite for about 3-4 months as they go through a series of procedures. First, they’ll have a PICC line implanted, then go through the procedure of having their cells transplanted. Afterwards, they have follow-up care.
Because the diseases are so rare, a lot of patients are travelling internationally. For example, we have a family from India living in California who have been here for nine months. We also have a family from Turkey that has gone to Spain to receive treatment.
It’s more complicated than finding a hotel for a couple of nights. They need long term accommodation with all the facilities and equipment they would find in their own home, as well as providing care and supporting them throughout their time there.
What are the biggest challenges of bringing a whole family to a site?
It depends on the family. One example that stands out to me was a US family with three children under the age of six who were enrolled in a trial for a modified form of stem cell transplant. All the children had a disorder affecting white blood cell production which causes increased infections, which can be lethal. Patients who don’t receive treatment tend to die at a young age.
We had the complexity of moving five people from Ohio to California, for an unknown amount of time. Originally, it was nine months, but we had to extend it when they decided the other two children were going to be screened and enrolled. So, now we had three patients in the same family engaged in the study. In some ways that made things easier to coordinate, and in some ways, it was harder because we now had three patients enrolled in the study.
We worked with the family very closely. I spoke with the dad numerous times, which normally would be the role of our project co-ordinators. However, because of the complexity of their situation, I just jumped right in. The dad sent us Christmas cards to let us know that they made it home in time for Christmas, and some lovely updates.
Another family, we brought over from India, where they left behind four or five children. We provided phones so that they could video chat with their family back home. I set up a plan with a local provider, got all their phones sorted, and made sure they had everything they needed to keep in contact with their loved ones.
Now, we’re on this push to get the family back home to India. It’s anxiety-provoking for them because they came over from India with a chaperone as they don’t really speak English, but they’re going home without one. We’re putting a lot of things in place and going above and beyond for them, like providing wheelchair assistance for the patient and seeing if there’s someone who speaks their language at the airport. I’m also going to write a letter on their behalf for the sponsor to review to make sure all airport staff understand what needs to happen and where they need to be.
It’s the little things we do that make sure that things go as seamlessly as possible.
What’s your process for listening to the patient’s needs, and facilitating the right support?
We work very closely with the sponsor, communicating regularly to make sure everything is aligned, and for complex studies, they have a patient advocate that works with us.
There are differences between what a patient needs clinically, and what they need on a day to day basis. The sponsor teams have to focus on the clinical to run the study. But then they have someone like myself, and a patient advocate, who support them with the day to day plans that support the patient. It’s a collaborative effort.
Above all, it’s about listening to the patient. Sometimes, you have to put the patient and their caregiver in the right state of mind because they might be anxious about an aspect of the trial. You have to reassure them they’re going to be as comfortable as we can possibly make them, balancing that with what we’re allowed to do because of clinical trial regulations.
In a role that’s so rewarding, what are you most passionate about?
I’m a science nerd at heart. I love the science of clinical research. It pains me sometimes that I’m not still working as a coordinator, because I like doing the research.
But now I’m in this role, I’ve found myself still being part of these outcomes. I get passionate when a patient gets treatment, or a drug trial we worked on goes to market, or when I know that a patient has been treated and is doing better.
I’m still passionate about the science too. I read the protocols, and I understand what the patients are going through so that I can help them. Then I can see if there’s room in the budget for things like extra leg-room on their flight.
It’s little things like that which make a big difference. They’re going to have these extra tests, they’re going to be tired, so little things help. Knowing I’m helping people makes me feel connected to what we do at mdgroup. I love talking to people in the company because the passion and the importance of the work we’re doing is so visceral. It’s really wonderful.
What has it been like doing your job during the pandemic?
The last 18 months have been crazy. It’s not just getting people where they need to go, it’s also that a lot of studies shut down because elective procedures stopped. Now we’re seeing things ramp up again, we’re busier than ever.
We’ve really had to think outside the box to figure out alternative routes to patient travel when you couldn’t enter a certain country. It’s amazing that people have been so willing to take ground transport for long distances, as some patients can’t fly because they’re immunocompromised.
We had to come up with new ideas. For example, a client had one single patient enrolled in a study. He lived in Arizona, and the clinical site was in California. The indication causes an immunocompromised state and although he had been well, it was a randomised trial so we don’t know if he’d been treated or not.
He wasn’t comfortable going to the site, and it was very important for the client to have his data because he was the only patient enrolled. We realised that this scenario would be great as a pilot for our new home health initiative.
Within a couple of weeks, we got everything up and running. The patient asked for his appointments to be in a hotel rather than at his home, as he’d feel more comfortable with that. We booked two hotel rooms, one for the patient one for the nurse, and the visit had to occur over 24 hour period with a series of 12 blood draws – it was complex! We did that twice for them a few months apart, and that was our pilot venture into home health.
What does delivering remarkable look like for your team?
For my team, it means going above and beyond. There are other companies out there that do the same thing that we do, and they probably do it just as well. But we provide a service where we do it with heart. I do my job with my whole heart, and I’m very connected to what I do. I teach that to everyone that I work with.
For us, it’s not just getting a patient from point A to point B, it’s making sure they’re comfortable. If they’re not comfortable, we figure out how can we fix it.
What drives me crazy as a customer service recipient is a lack of communication, so I want to make sure we communicate with all our patients. We make sure we explain things to them because a lot of them are feeling overwhelmed. You get a lot of information when you’re engaged in a clinical trial and it’s all very scientific. So, breaking things down and communicating effectively is really important.
To be remarkable in this field, to do what we do, you have to do it with heart and passion.
What impact does advancing technology make on your role?
It can make a huge impact, especially in communicating with patients and in delivering a better patient experience. That’s the priority, to make sure we’re making and using technology in a way that enhances the experience for patients.
Technology can be overwhelming though too. I work with several patients that are elderly, including some who are blind, so a lot of technology doesn’t meet their needs.
To have a technology platform that enhances both the patient and caregiver experience would be the ultimate goal – and that’s what we’re working towards at mdgroup.
How does a patient-centric approach support outcomes and patient retention in clinical trials?
Without the patient, you wouldn’t have a trial. Our job is to refocus trial sponsors on patients, rather than numbers. We communicate patient perspectives and needs to the sponsor, and advocate for them.
If you don’t have a patient who is engaged, who will complete diaries or show up to all visits, you’re not going to have a trial or the data you need. Of course, you can replace them, but for every patient that drops out, the cost to replace them rises exponentially.
Whereas, if you pay however much for their flight, concede a bit on something they’re requesting that matters to them, or book and manage their travel process – whatever you can do – then you won’t have to pay extra for recruitment because that patient will stay in the trial.
What patient experiences have had the biggest impact on you and your team?
There have been so many. We had a patient in a gene therapy trial who ended up having to have a heart transplant while he was on site. We had to book an apartment so he could stay longer to have the surgery and recover, which was an ordeal.
We brought a family over from Norway, and the parents were divorced. The mother wanted to come over for a period of time and dad wanted to come over too because the patient was here for six months. We worked out their separate visits, getting them to the site and back home again, with the right visas.
We have a family from Qatar that we supported during COVID, who kept getting stuck. We had to keep extending their stay for weeks on end because they needed a return visa and COVID testing, so we worked with them very closely to support them.
There are some trials we facilitate where it’s a one-day event, it’s ground transportation, they get there, they come back, that’s it. For these more complicated ones, where we’re following patients while they’re on-site and making sure their return date still stays, we’re kind of holding their hand throughout.
How have mdgroup have dealt with the past 18 months?
We’ve really grown as a company. We’ve been able to shine and show what we can do. Personally, I’ve really had to push myself to think outside the box. My team and I have got people to places that I never thought we’d be able to do in a pre-pandemic world, and we’ve done it during a pandemic.
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