As a global project management team member, Brittany Haltzman-Cassenti supports clients and advocates patients. We last spoke with Brittany in 2021 about what lessons had been learned from the pandemic. We recently caught up with Brittany again about the ongoing legacy of COVID-19 and what makes a remarkable patient experience in 2023.
Brittany told us: “Over the past few years, my role has evolved. In July 2021, I was promoted to my senior role, which allowed me to work more on developing and implementing new processes with our patients, sites, and sponsors. My senior role also allows me to partner more with our business development team and help with new initiatives.
“No matter how steep the learning curve or how complicated patient services has become over the past few years, we have focused on our ultimate objective at mdgroup – ensuring patients complete their clinical trial.”
Working with the patient to improve their individual experience
“The unique challenges of the pandemic and its ongoing impact on the healthcare industry have encouraged us to think out of the box when designing our patient experiences. We’ve learned to throw out the textbook on conducting a clinical trial and genuinely put the patient at the heart of the study. We’re proud that our patients become collaborators and partners in their care rather than just a subject of study.”
The rise of the decentralised clinical trial (DCT) enabled Brittany and her team to build experiences around the needs of patients participating in a clinical trial during a global pandemic with all its added pressures and complications. The critical lessons learned were not so much about addressing the practical and logistical but about listening to, understanding, and empathising with patients.
Acknowledging and understanding patient anxiety
“As if taking part in a clinical trial yourself, or caring for a child or family member taking part, wasn’t stressful enough, adding the COVID travel restrictions, mask-wearing, and seemingly never-ending COVID testing into the mix made getting to and from site incredibly challenging.
“Just getting from [U.S.] state-to-state was often confusing and frustrating, so getting families from the other side of the world to sites in the U.S., England, or Spain, for example, was a real operation in planning and flexibility. With language barriers and travelling with sick loved ones in the mix, you have an incredibly challenging and potentially very stressful experience.
“Taking that step back before any travel was planned to ensure we managed families’ expectations, becoming experts on the ever-changing COVID guidelines ourselves, and supporting our patients through their experiences, became one of the most important parts of the job.”
The typical standard is not good enough
“One of a sponsor’s typical standards to support families enrolled in a clinical trial is to reimburse meals out. My team and I work with some incredibly rare disease trials where taking yourself or your family to a restaurant isn’t feasible because of either the patient’s young age, the frailty of a patient, or because the patient isn’t mouth fed. We had one such example of this where the sponsor mentioned that the parents of a very young patient would need to find food processors and crock pots to slow-cook nutritious food during the day and process these before mealtimes so they could feed their child via a tube. We went one better than conversing about how challenging this would be: we gained approval from the sponsor and we bought the family the much needed appliances and delivered them to their accommodation.
“Knowing that a family needs a practical type of support is one thing, but understanding how difficult it would be to arrive in another country and battle a language barrier and unfamiliar environment to find a store to buy these appliances in, get them back to your accommodation and then go through the reimbursement process to claim them back, that’s another.”
Brittany and her team have been working with sites and sponsors to create relationships with patients and their families wherever appropriate and possible to ensure that remarkable becomes typical of the mdgroup patient experience.
Putting choice and control at the heart of the patient experience
“I have a master’s degree in health psychology and know that two of the most important elements in mental well-being are having choice and control. During the pandemic, as DCT methodology came into its own, I saw firsthand how having choice and therefore control over how, when, and where to undergo trial treatment impacted patients and their families positively.
“But it would be a mistake to throw ourselves whole-heartedly at a DCT approach. DCTs may give patients options, but imposing those logistical options just because we can, is still an imposition, and patients will lose choice and control again.”
Hybrid trials are the future of the clinical research experience
“Hybrid trials are the future because they give patients options. With options comes choice; with that choice is the control patients need to feel like a collaborator and partner in their care.
“A hybrid trial doesn’t just address the practical and logistical as a DCT does; it throws the textbook approach away and addresses patients experience-by-experience and visit-by-visit. Hybrid trials build an experience around a patient’s physical and emotional needs.
“Discussing the choices available within a hybrid model at enrollment stage may just make a patient more willing to take part in the first place and, once they’re enrolled, understanding that patient and building a hybrid trial with options and choice around their unique challenges increases the likelihood of engagement and trial retention.
“Ultimately, giving a patient choice and control delivers our main objective at mdgroup, which is to get our patients to complete their trial.”
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