Tag Archive for: clinical research coordinators

How Are Cultural and Language Barriers to CAR T Therapy Being Addressed?

How Are Cultural and Language Barriers to CAR T Therapy Being Addressed? from Patient Empowerment Network on Vimeo.

How are CAR T therapy barriers of cultural and language nature being addressed? Expert Dr. Sikander Ailawadhi from Mayo Clinic discusses research study results on access barriers and ways to create solutions that address language and cultural issues.

[ACT]IVATION TIP

“…having a culturally sensitive discussion and a system that approaches the patients for complex treatments like CAR T or clinical trials. And personally, I’ve seen that it makes a big difference to the patient’s consideration of those treatment options.”

Download Guide | Descargar Guía

See More from [ACT]IVATED CAR T

Related Resources:

How Can CAR T-Cell Therapy Be Explained to Patients and Families?

How Can CAR T-Cell Therapy Be Explained to Patients and Families?

Reducing CAR T-Cell Therapy Barriers for Relapsed/Refractory Myeloma

Reducing CAR T-Cell Therapy Barriers for Relapsed/Refractory Myeloma

Roadblocks for Black and Latinx Patients From CAR T Trial Access

Roadblocks for Black and Latinx Patients From CAR T Trial Access

Transcript:

Lisa Hatfield:

Dr. Ailawadhi, we know cultural or language barriers may hinder access to information about CAR T-cell therapy. How are you and your colleagues addressing this barrier?

Dr. Sikander Ailawadhi:

It’s very important to think about cultural or language barriers and how they may affect our way we deliver the care and the way the patients consume that healthcare. A few years ago we had done a study looking at just electronic medical record usage and how patients participate in their EMRs, for example. And we realized that for patients who are non-white, language barrier was a big issue because frankly, majority of our EMRs are English. They don’t provide a lot of Spanish or other language support.

Similarly, clinical trials and education material for CAR T, et cetera, they are very frequently in English. There is an increasing number of Spanish documents that are becoming available. So how we try to overcome these barriers, I think we have started, utilizing an approach in our institution where our research staff, we are trying to hire a diverse population.

There is data that based on studies, it has been very clearly shown before that, a patient is more likely to consider favorably a clinical trial or a treatment if it is being offered by someone who look and speak like them. So an African American patient is more likely to accept or consider a treatment, I would say, not even accept, but consider a treatment if it is being offered by an African American physician, an African American clinical research coordinator, et cetera.

While I’m not African American, I can’t change that, but we have African American, Hispanic, Asian clinical research coordinators in our teams, and we have noticed a clear difference in the patient’s understanding their ability to ask questions, their willingness to ask questions and clear out their barriers if it is given to them in a culturally sensitive, culturally appropriate manner.  So my activation tip for this question would be, having a culturally sensitive discussion and a system that approaches the patients for complex treatments like CAR T or clinical trials. And personally, I’ve seen that it makes a big difference to the patient’s consideration of those treatment options.


Share Your Feedback

Create your own user feedback survey

Could an MPN Clinical Trial Be Your Best Treatment Option?

Could an MPN Clinical Trial Be Your Best Treatment Option? from Patient Empowerment Network on Vimeo.

Lindsey Lyle discusses the role of clinical trials as an MPN treatment option and how research is advancing the field.

Lindsey Lyle is a physician assistant at the University of Colorado Cancer Center, specializing in hematological malignancies with a subspecialty in myeloproliferative neoplasms (MPNs). More about this expert here.

See More From the The Path to MPN Empowerment

Related Programs:

Diagnosed With an MPN? Why You Should Consider a Second Opinion.

Essential Lab Tests for MPNs

Could an MPN Clinical Trial Be Your Best Treatment Option?


Transcript:

Lindsey:

When considering treatment, remembering that clinical trials are an option – and often, a very good choice – is something that I really try to communicate to my patients. Generally, there’s a stigma around clinical trials as patients feeling like a lab rat or some sort of a study subject, and there is a perception that they’re not receiving as good of care as they would if they were not on a clinical trial. However, in my patients, I really try to dismiss this thinking because at this point in time, we do have really fairly good options for treatments with MPNs.

However, we do not have a cure for MPNs outside of a transplant, and our treatments are not perfect, and so, enrolling in a clinical trial really should be considered by patients and their providers as a very viable option.

It’s generally introducing perhaps a new way of approaching the disease treatment. Oftentimes, clinical trials are using a combination of agents, which is not necessarily available outside of the clinical trial.

And so, with clinical trials, we’re always trying to make something better. We’re trying to learn something, we’re trying to, No. 1, help the patient – so, my No. 1 goal in enrolling one of my patients in a clinical trial is to, first of all, help them, help control their disease, help them to feel better, and to live a long and good life. No. 2, we learn as we go along. Clinical trials are critical for drug development and for the future of treatment in patients with MPNs.

So, not only are our patients helping themselves, but hopefully, they are helping the future MPN patients who may come along and need a treatment. So, I always like to keep this really in the conversation when discussing treatments, and it may be up front, and it also may be after a treatment has stopped working that we consider a clinical trial.

So, there are also a lot of things that kind of go into clinical trial management and different requirements, so if a patient lives very far away, it may be challenging for them to come back to the academic center on a regular basis for routine clinical trial monitoring that’s required by the study, but if they live close by, I generally do recommend this. They are also associated with clinical research coordinators or clinical trial nurses.

And, these patients are monitored really very closely, and it’s kind of nice to have that extra person in it with you in the clinical trial, just another point person to discuss, perhaps, how you’re feeling or different questions or concerns as the clinical trial proceeds. So, when talking about treatments, in my opinion, especially in MPNs, clinical trials really should be one of the options that is first discussed when thinking about starting treatment, and especially if a treatment has stopped working.

So, there are very many exciting possibilities in MPN research right now. We have a lot of combination therapies, which I think I am most excited about, because we have a decent backbone of therapy at this point, but building on that and trying to maybe enhance the way that the backbone therapy works, and also to perhaps change the microenvironment of the bone marrow – basically, trying to reverse fibrosis.

So, there is currently a drug in clinical trial that is looking at this, and we are proceeding with this trial, and really hoping for the best, but I think that to combination therapies where we can put two things together that we think work really well together to help produce good outcomes – I think I’m most excited about that at this point.