Tag Archive for: healthcare providers

How Can Myeloma HCPs Initiate Clinical Trial Conversations?

How Can Myeloma HCPs Initiate Clinical Trial Conversations? from Patient Empowerment Network on Vimeo.

How can myeloma healthcare professionals start clinical trial conversations? Dr. Craig Cole from Karmanos Cancer Institute shares how he initiates conversations with newly diagnosed patients and how myeloma community groups also help patients and families.

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Transcript:

Dr. Nicole Rochester:

That’s an amazing success story. Thank you for sharing that. What about you, Dr. Cole, with regard to potential strategies for healthcare providers, what are some things that they can implement for initiating these clinical trial conversations early in the journey, particularly in the current environment?

Dr. Craig Cole:

Yeah. And Ms. Gleason had mentioned this at kind of the top of our talk about having those conversations on day one. On day one of our patients coming in either as a second opinion, as a new diagnosis, as in whatever setting, we talk about…we have a list that we go through with the patient that talks about their stage or the disease, how we’re going to follow up. And there’s a line that I have to address, which is, clinical trials. So I mentioned our clinical trials, I mentioned on day one. And I think one strategy that other healthcare providers can take is that, even if you don’t have a clinical trial at that time, so right at this moment, we don’t have an upfront clinical trial.

We have one for maintenance therapy, post-transplant, but we don’t have an upfront trial. I mention that. I say that there are clinical trials that are available for your myeloma. Right now we don’t have a clinical trial for upfront myeloma, but we can refer you for a second opinion for an upfront trial if you’re interested or…and we have a clinical trial in maintenance.

So that sets the groundwork that we’re going to talk about clinical trials on every visit. And that it doesn’t come as a surprise. Because the last thing you want to do is that someone is having a relapse and you say, “Oh, we’re going to talk about clinical trials today.”  Because then it’s like, “Oh my goodness, this is a desperation.” This is a desperation move, and it puts a lot of anxiety when you frame it, and we need to do this now as opposed to having on day one.

The second thing that I think really helps is getting patients involved in the myeloma community, especially with the support groups having not only the patients, but their care providers and families involved in the myeloma community. Because the myeloma communities through a lot of the support agencies like the IMF, the MMRF, the HealthTree, they have a very strong clinical trial culture. And when patients get involved, not only is that empowering to see other myeloma patients doing well, but to hear other myeloma patients talk about their experiences in clinical trials really, really helps. And I think the last thing that we use to help patients, go through clinical trials, is a couple of other things, is one, every time we talk about treatment options,  if that is maintenance, if that is smoldering, if that is a relapsed/refractory therapy, we always put clinical trials in that conversation.

 Again, even if we don’t have that clinical trial at our institution, we talk about this as an option that we could refer you out to. And, and then we always talk about…I think one other little thing is that every visit that patients have, I somehow include some of the new things that are happening in myeloma. Now, my patients kind of expect it. They expect. They know when December and June is because when I see them after ASH and ASCO and sometimes they’re like asking, “So what’s new?” And once we get into that groove, they see, gosh. There are response rates that are off the charts with some of these new things. These patients are involved in clinical trials and the myeloma and multiple myeloma research is progressing at such a rate and things are getting better that patients want to be involved in it.

So we’re always talking about new things. Do I go into depth of detail with talquetamab (Talvey) and pomalidomide (Pomalyst). I don’t go into depth of detail. And I say, where I was this clinical trials at our last ASH meeting that combined these two drugs for a relapsed/refractory myeloma, even patients who were refractory to some of the drugs you’re on now. And response rate was like 100 percent. And then when I talk about those clinical trials in the future, they’ll remember, man, that guy was talking, he’s all upset about these clinical trials. Maybe I want to be involved in them. So that’s kind of my few strategies that I use. 

Dr. Nicole Rochester:

I love that. And what I really hear both of you saying is this idea of normalizing conversations about clinical trials and not introducing them as like a Hail Mary, so to speak, but really from the very beginning, letting patients and care partners know that this is a viable treatment option. So I think that is wonderful. And I can say like, your excitement is contagious for me, so I can only imagine how excited the patients that you work with feel.


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Dr. Jun Gong: Why Is It Important for You to Empower Patients?

Dr. Jun Gong: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo

Why is it important to empower patients? Expert Dr. Jun Gong from Cedar-Sinai Medical Center shares his perspective on how empowering patients impacts them and specific ways he improves his gastric patient care.

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Transcript:

Dr. Jun Gong: 

So empowering patients is very important because we can only do so much from our side in terms of we have treatments to offer, we have prescriptions to provide, we have diagnostics we can do to work up certain maladies and illnesses. However, I think what we don’t grasp is how much happens at home. The majority of the time is the patient at home with their caregiver, with their family members? And here, I think it’s a very important pillar of treatment where not only is one pillar just from the oncologist side and from the doctor’s and all the healthcare providers’ side, the other pillar is what happens at home.

And this is where I think empowering patients is very important. This is where empowering them to control what foods they eat, what foods have been known to be risk factors for stomach cancer or any kind of cancer.

What foods to focus on, to building nutrition, to be able to tolerate chemotherapy or cancer treatment, to be able to boost your immune system. These are important aspects that are controlled really at the patient level and the family level. The other way to empower patients is activity. We often say it that, mother knows best. If you don’t use it, you’re going to lose it. And so debilitation is a big problem in our cancer patients as well.

So ways to promote activity, whether it’s just a walk, a daily walk outside the neighborhood, or even to more strenuous types of cardiac exercises. And here we actually have newer resources available in our physical rehab colleagues. Our cancer nutritionists are excellent resources as well. And these are just aspects of empowering patients on what they can do at home. Because I often find patients and family members ask, what else could we be doing beyond what we are prescribing in the clinic and what we’re doing in the hospital or the medical care setting?

The other aspect is to empower patients to know that it is appropriate, always appropriate to seek more than another opinion on your treatment plan. And we have a really, really close relationship from both the academic to the community level where we’re more than happy to review clinical trials, provide second opinions. Here is a very important part that we recognize that we are not here to, let’s just say, have patients stay with us for treatment. We envision a relationship where if a trial is not available, our recommendations should be to deliver these recommendations to the community provider so that they can provide day-to-day care because their care is just as excellent and they have just the same access to standard of care. We are here for a mutual relationship and partnership. It is not a one-way street, and it’s not definitely a black hole where if you refer patients to a larger academic center, are you worried that you won’t hear from the patient or from the provider? We always make it a close goal to have timely feedback to our referring partners. And this is just some of the few ways that I believe it’s important to empower your patients.

Critical Clinical Trial Conversations in the Expanding Myeloma Landscape Resource Guide en Español

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Advice From a Cancer Survivor for Better Whole Person Care

Advice from a Cancer Survivor for Better Whole Person Care from Patient Empowerment Network on Vimeo.

 How can better whole person care be achieved by patients and healthcare providers? Dr. Nicole Rochester and Sasha Tanori discuss ways that care can be improved to work toward optimal patient care.

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Transcript:

Dr. Nicole Rochester:

If you had some advice that you could give from a patient’s perspective, and maybe you’re talking to a policy maker or healthcare providers, but how can we do better in this area as it relates to whole person care, culturally competent care?

Sasha Tanori:

I would definitely say take your patients more seriously and not just like one-offs, okay, bye. A lot of the time, they just do a couple of tests and they’re like, “Oh well, we can’t find anything, so let’s just move along,” and there needs to be more conversation as well.

A lot of the doctors will come in and talk to you for like you said, 15 minutes, and then it’s like, “Okay, you know, well, we can’t find anything wrong, so just go.” And it’s like, “No, let me explain everything, let me explain how I’m mentally feeling, how I’m physically feeling, how stressed out feeling, how emotionally I’m feeling.” And there are just so many different layers to just one, if you come in and say, “Oh, well, my hip hurts.” Okay, but why I explain more to it, not just okay let’s do an x-ray and you leave. Like there needs to be a lot more conversation going on between the patient and the doctor, there needs to be a lot more understanding where it could also be stress as it relates to work, it could be stress related to family, to love the ones…to kids, to spouses, there are so many different things on top of that, that’s more than just, you know, “Hey, you know like, I just need a prescription,” and you can go. There’s so much more conversation needs to be have then I really wish that a lot more healthcare providers would have that conversation with them, I know they don’t always have the time, they’re busy, but at least a little bit more compassion, a little bit more understanding, going about when it comes to patients.

Dr. Nicole Rochester:

I appreciate that, and you’re right. The time is an issue. And I will tell you as a physician and as somebody who has tons of physician friends, it causes internal conflict within the doctors, because I don’t know any doctor that got into this for any reason, primarily, other than to help patients, and so to be placed in these situations where you know that you’re falling short of providing the care that your patients need is actually quite disturbing.