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What Are Common Emotional Issues CAR T-Cell Therapy Care Partners Face?

March 29, 2023/in Care Partner Programs, Care Partner Resources, Care Partner TK, Care Partner TK Tools /by Kara Rayburn

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What Are Common Emotional Issues CAR T-Cell Therapy Care Partners Face? from Patient Empowerment Network on Vimeo.

What are common emotional challenges that care partners of CAR T-cell therapy patients face? Social worker Marc Paloma explains common difficulties and advice for managing emotions. Marc Paloma is an outpatient hematology/oncology clinic social worker at University of Chicago Medicine.

Related Resources:

Expert Advice for CAR T-Cell Therapy Care Partners

How Can a Social Worker Help CAR T-Cell Therapy Care Partners?

CAR T-Cell Therapy Care Partners: What Questions Should You Ask the Healthcare

CAR T-Cell Therapy Care Partners: What Questions Should Your Ask the Healthcare Team?

Transcript:

Katherine Banwell:

Being a care partner can be emotionally and physically draining, so what are some common emotional issues that they face?

Marc Paloma:

I would say from my experience, a lot of care partners as they’re going along through the process, it’s if people have questions about their competency as the care partner. Am I not doing enough to support the patient? Am I doing something wrong? Is there something I can be doing better? Or am I maybe hovering too much?

Katherine Banwell:

Yeah.

Marc Paloma:

Am I overcaring or something in some way? And so those are some things. I also tell the care partners that it’s okay to acknowledge that they have needs as the caregiver.

And they can even say things out loud to their support people of what I’m doing can be a very tough job, and there are challenges to it. And at the same time, then also trying to not feel guilty about having those feelings of saying maybe sometimes I’m having a rough time. So, yeah, it can be, right, very, especially emotionially, emotionally taxing I think for the care partners. So, I think also just one other thing I would add.

One other I think emotionally very difficult part I think which is something that often I think goes unsaid, although I’m hoping it doesn’t go unsaid with the care partners that I work with, is that care partners and patients everybody has that nagging question, that dreaded feeling of what happens if this CAR T process does not work? What if my loved one passes away? So, it all for all of those – all those reasons, am I doing it right? Am I doing it wrong? Am I doing too much?

What if this doesn’t – all of those things just make it a very emotionally taxing process for the patient and also for the care partner as well.

How Can a Social Worker Help CAR T-Cell Therapy Care Partners?

March 29, 2023/in Care Partner Programs, Care Partner Resources, Care Partner TK, Care Partner TK Communicating /by Kara Rayburn

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How Can a Social Worker Help CAR T-Cell Therapy Care Partners? from Patient Empowerment Network on Vimeo.

What support can CAR T-cell therapy care partners expect from social workers? Licensed clinical social worker Marc Paloma shares how social workers support care partners and patients before, during, and after the CAR-T process. Marc Paloma is an outpatient hematology/oncology clinic social worker at University of Chicago Medicine.

Related Resources:

Expert Advice for CAR T-Cell Therapy Care Partners

What Are Common Emotional Issues CAR T-Cell Therapy Care Partners Face?

CAR T-Cell Therapy Care Partners: What Questions Should Your Ask the Healthcare Team?

Transcript:

Katherine Banwell:

What is your role in helping CAR T-cell therapy care partners?

Marc Paloma:

So, here at the University of Chicago Medical Center, every patient who’s identified as going through the CAR T process, I meet with them and their care partner right when they’re identified as candidates for CAR T. There’s a full social work psychosocial assessment that gets completed. It’s an 80-question questionnaire that involves the patient and the care partner both just asking all kinds of questions about the support that they have, how they’re coping. Just lots of very practical kinds of questions about have you completed your power of attorney, and do you understand the process of the CAR T? So, I find that I’m picking up on providing support to the care partners when I’m doing that initial assessment.

And then throughout the process after the patient goes through the CAR T process hospitalization and when they’re coming back for their follow-up visits. So, I can do lots of sort of follow-up check-ins with the care partners, see how they’re doing, how they’re coping, how things are going. I also try to make sure that I foster an open dialogue with the patient and the care partner. Again, since so that it’s at least being said out loud that the care partner is also going through their care – their parallel process of being the care partner and what it’s like for them and that it can be stressful.

That often leads to a little bit of a conversation sometimes of balancing between the patient’s feeling sometimes of “I’m being a burden to my care partner, I feel guilty about doing that.” And then the care partner’s feelings of, “No, you’re not being a burden. Of course, I’m going to do this for you because I’m your,” spouse or your partner or your sister or whatever.

And so I try to foster that open dialogue between the care partner and the patient so that they both sort of know this is what we’re feeling and it’s not just being kept inside. That it’s actually being spoken out aloud. I just and I think that is just helpful because that’s just sort of lets the partnership – the partners know kind of what’s going on. You’re actually talking out loud. And I feel that as the social worker, I’m able to facilitate that communication, so.

CAR T-Cell Therapy Care Partners: What Questions Should You Ask the Healthcare Team?

March 29, 2023/in Care Partner Programs, Care Partner Resources, Care Partner Resources Video, Care Partner TK, Care Partner TK Communicating /by Kara Rayburn

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CAR T-Cell Therapy Care Partners: What Questions Should You Ask the Healthcare Team? from Patient Empowerment Network on Vimeo.

What questions should CAR T-cell therapy care partners ask the healthcare team? Social worker Marc Paloma shares key questions to ask to prepare themselves for the CAR-T process for their loved one, explains the role they play as a care partner, and discusses team members who can support them. Marc Paloma is an outpatient hematology/oncology clinic social worker at University of Chicago Medicine.

Related Resources:

What Resources Are Available for CAR T-Cell Therapy Care Partners?

How Can CAR T-Cell Therapy Care Partners Maintain Their Own Self-Care?

Are You a CAR T-Cell Therapy Care Partner? Why You Should Ask for Help

Transcript:

Katherine Banwell:

When meeting with the healthcare team, what are key questions that CAR T-cell therapy care partners should ask?

Marc Paloma:

Sure. So, I think probably the most important thing for the care partner is making sure that they know who their key resource health providers are in the process. And, of course, not to discredit myself in any way, of course, because I think the social worker is obviously a very important partner in the whole process of CAR T. But here at the University of Chicago, we have CAR T nurse coordinators. They are the ones who kind of like sometimes translate things down into kind of plain English for patients.

They talk to the patients and the care partners about when your CAR T collection is going to happen, here are the next steps. Here’s maybe some testing that you have to have done prior. So, I always tell the care partners, that is – so that’s the person that you go to for sure. You go to your nurse, your CAR T nurse coordinator to answer your initial questions. And then they can bring other healthcare providers in to answer more specific questions.

So, one, knowing who your key resource health providers are. I think it’s also important for them – like a key question is to ask kind of in the vein of what are my expected responsibilities? What exactly am I going to be asked to do as the care partner? For us here at the University of Chicago, we do have a very set list of specific rules and responsibilities that we give to care partners that’s written down, and we provide that to them.

And it’s all the basics that you would think about making sure the patient has hydration, they’re taking their medicine, they’re getting their rides to their follow-up visits, somebody’s with them if there’s anything that they need. Somebody’s taking care of all the concrete things at home like cooking, cleaning, laundry, outside grocery shopping, things like that. So, those questions and then I think another thing is what – just so in the same vein of just so that the care partners know what to expect, I always tell healthcare partners ask questions like, what is it going to be like for the patient during the CAR T process?

What’s their condition going to be like? And then what is their condition going to be like when they leave the hospital, and I’m providing the hands-on care for them at home? Just so that they have an idea of what to expect. And I find that that’s important because there are some care providers who really think that when patients go home that they’re going to be bedbound and need 24/7 care, and we have to sometimes do some re-educating that that is most of the time not the case for patients.

Yes, you will have the responsibility of providing care, but it won’t be like you have to be awake 24/7 for weeks and weeks. So, those are important things I think for care partners to ask.

Expert Advice for CAR T-Cell Therapy Care Partners

March 29, 2023/in Care Partner Programs, Care Partner Resources, Care Partner Resources Video, Care Partner TK, Care Partner TK Understanding /by Kara Rayburn

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Expert Advice for CAR T-Cell Therapy Care Partners from Patient Empowerment Network on Vimeo.

How can care partners prepare to care for someone undergoing CAR T-cell therapy? Social worker Marc Paloma shares advice to prepare oneself for the process and encourages care partners to manage expectations with friends and family. Marc Paloma is an outpatient hematology/oncology clinic social worker at University of Chicago Medicine.

Related Resources:

What Are Common Emotional Issues CAR T-Cell Therapy Care Partners Face?

How Can a Social Worker Help CAR T-Cell Therapy Care Partners?

CAR T-Cell Therapy Care Partners: What Questions Should Your Ask the Healthcare Team?

Transcript:

Katherine Banwell:

Marc, what are three key pieces of advice you have for care partners who are preparing to care for someone going through CAR T-cell therapy?

Marc Paloma:

So, I sometimes use the analogy with them that for patients as well, but also for the care partners going through CAR T is almost like preparing or going through a marathon or doing marathon training. So, for the CAR T partners, I always – to the CAR T care partners, I always say as much as you can be in the best physical and mental shape as you can be going into the process because there obviously will be a lot asked of you as the care partner. I also remind the care partners remember that you are not a perfect person and there are going to be times where you maybe will make mistakes or maybe not do the best that you think you could have been or you could have done. And just to forgive yourself if needed.

And also the last thing is to acknowledge even out loud to family members to the patient that while you’re being the care partner for that you are also going through a process as well, a parallel process to something that the patient is going through. And that’s something that can create its own anxieties and insecurities for the care partner. So…

Katherine Banwell:

Yeah.

Marc Paloma:

…those are the three important things I would say.

And lastly, be patient with the process as the patient goes through the recovery and the healing process. There are many days where if you’re going forward, things are going well and it can feel like three steps forward and then maybe one step backwards.

So, just be as patient as you can with that healing process and as the care provider, you and the patient will get through it. It just sometimes takes time to go through that process.

Are You a CAR T-Cell Therapy Care Partner? Why You Should Ask for Help

March 29, 2023/in Care Partner Programs, Care Partner Resources, Care Partner Resources Video, Care Partner TK, Care Partner TK Tools /by Kara Rayburn

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Are You a CAR T-Cell Therapy Care Partner? Why You Should Ask for Help from Patient Empowerment Network on Vimeo.

Asking for help as a CAR T-cell therapy care partner does not show weakness. Social worker Marc Paloma shares why it’s important to ask for support and resources. Marc Paloma is an outpatient hematology/oncology clinic social worker at University of Chicago Medicine.

Related Resources:

What Resources Are Available for CAR T-Cell Therapy Care Partners?

How Can CAR T-Cell Therapy Care Partners Maintain Their Own Self-Care?

How Can a Social Worker Help CAR T-Cell Therapy Care Partners?

Transcript:

Katherine Banwell:

Why is it so important for care partners in asking for help?

Marc Paloma:

I think it always keeps getting back to what I had said previously was that it’s important for care partners to acknowledge that they are also going through a parallel process. Obviously, it’s not the same process because the medical intervention isn’t happening to the care partner, that’s happening to the patient obviously. But there’s also a process that the care partner is going through. So, of course, the main focus of all the treatment and the follow-up visits, a lot of it, of course, is focused on the patients. Them getting blood draws and results and how are things going and looking for signs of infection and all of those things.

So, there’s so much focus on the patient that I always want to make sure that the care partner knows that they’re not being lost in the shuffle. That there’re also somebody who’s kind of thinking about them or at least acknowledging that, “Yes, I’m going through this process as well.”

And that is something that can be very stressful. It can be very taxing physically; it can be very taxing mentally. And I feel like just knowing that a care partner somebody is there to tell a care partner that like, “Yes, I acknowledge that you’re going through this and that this is happening.” I think it just helps a care partner sometimes feel that they are being supported or that they’re being heard. Because I feel that sometimes care partners feel that it’s they’re the unsung heroes doing the heavy lifting of doing the caretaking for the patient.

And, yes, it’s not about the care provider doing it so that they can get the glory of being the care partner. But it is sometimes nice for somebody to say to them, “What you’re doing is a really hard thing. And it’s obviously very important, and the patient relies on you, and our care team here at the University of Chicago relies on you.”

“So, what you’re doing is important, but it can also be sometimes difficult physically and also even mentally.”

Katherine Banwell:

Yeah.

Marc Paloma:

So, it’s just good to I feel like good to give that encouragement to the care provider.

How Can CAR T-Cell Therapy Care Partners Maintain Their Own Self Care?

March 29, 2023/in Care Partner Programs, Care Partner Resources, Care Partner Resources Video, Care Partner TK, Care Partner TK Tools /by Kara Rayburn

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How Can CAR T-Cell Therapy Care Partners Maintain Their Own Self-Care? from Patient Empowerment Network on Vimeo.

Self-care is key for CAR T-cell care partners. Social worker Marc Paloma reviews ways that he helps support care partners and provides tips to maintain self-care while caring for your loved one. Marc Paloma is an outpatient hematology/oncology clinic social worker at University of Chicago Medicine.

Related Resources:

Expert Advice for CAR T-Cell Therapy Care Partners

What Resources Are Available for CAR T-Cell Therapy Care Partners?

Are You a CAR T-Cell Therapy Care Partner? Why You Should Ask for Help

Transcript:

Katherine Banwell:

Yeah. How can they keep up on their own self-care?

Marc Paloma:

So, I try when they’re doing their follow-up, when the patients and care providers are here for the follow-up visits, I try to check in, “How are you doing?” I will remind care providers like, “Check in with yourself. How are you doing? How are you feeling? Are you feeling stressed out? Are you feeling okay today?” If possible, we also talk about having a plan from the outset at the beginning of the discussion for the CAR T of maybe having people, a small group of people that you can rely on so that if there’s a time that you need a mental health break, you can call one of your family members or one of your adult children or somebody from your faith organization or a neighbor. That small group of people that you may be able to rely on to say, “You know what? I’m needing a little bit of a break today.”

“It’s been maybe seven days, and it’s another day today we’re at home. I feel like I just want to take a bit of a break. Can I call my,” – the parents, or excuse me, “can I call the patient’s sister and have her come over, so I can go and have some time to myself?” Go to the library, read, or go out to lunch, or do a little shopping, or do whatever. Go for a drive or for a walk. So, I think those are important things. It’s almost like having a care partner for the care partner.

Katherine Banwell:

Yeah.

Marc Paloma:

You want your backup support people so that they are – they know that they’re supported and if they need some help, that they can get some.

What Resources Are Available for CAR T-Cell Therapy Care Partners?

March 29, 2023/in Care Partner Programs, Care Partner Resources, Care Partner Resources Video, Care Partner TK, Care Partner TK Tools /by Kara Rayburn

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What Resources Are Available for CAR T-Cell Therapy Care Partners? from Patient Empowerment Network on Vimeo.

Are there resources for CAR T-cell therapy care partners? Licensed clinical social worker Marc Paloma shares information about support resources that are provided to assist CAR T-cell care partners. Marc Paloma is an outpatient hematology/oncology clinic social worker at University of Chicago Medicine.

Related Resources:

Expert Advice for CAR T-Cell Therapy Care Partners

What Are Common Emotional Issues CAR T-Cell Therapy Care Partners Face?

CAR T-Cell Therapy Care Partners: What Questions Should Your Ask the Healthcare Team?

Transcript:

Katherine Banwell:

Yeah. What resources are available for CAR T-cell therapy care partners?

Marc Paloma:

So, I work with a variety of local and national organizations that do provide supports for CAR T partners. Some of the bigger national organizations would be like the American Cancer Society or The Leukemia & Lymphoma Society. They can link care partners with support groups for people who are doing caregiving for patients.

Sometimes you do have to do a little bit of research and I think now, especially kind of post-pandemic still, there’s a lot of things that are being done online or through Zoom. So, there – but I do notice, especially locally here in Chicago, things are kind of getting back to where there is some in-person meetings. So, support groups, I think from organizations I think also not only to it – this is something – these are things that support the patient and the care provider both.

And this is something whereas a social worker I can help, there are many different kinds of grant programs like in-kind actual money and funds that are available for CAR T recipients. And the care partners that can help them with cover the cost of transportation for all of their follow-up visits, or they are needing to live locally in lodging or hotels following their CAR T hospitalization. There’s a lot of organizations that can be tapped into that way to get financial assistance or financial help.

And I think lastly also the CAR T companies themselves, I mean, there are – when we started doing this, I can’t even remember here at the University of Chicago four or five years ago, maybe. There were just three or two CAR T companies that were offering CAR T, and now there’s over a dozen. And we do so many now and they’re all different. And as much as I can, I try. But there are CAR T companies that actually also offer patients and care partners that kind of in-kind, kind of support like assistance like financial assistance with food, with lodging, with travel.

So, those are all things, again, I mean that helps the patient, but that also very much is helping the care provider as well because they also need to make sure that their expenses are taken care of, so. I always whenever I’m doing the initial meeting with a patient and the care provider, I always say check back and it’s, again, it’s with their CAR T nurse coordinator, check back with your CAR T nurse coordinator.

See if the CAR T that you are doing, see if that company offers any kind of actual assistance with transportation or with your lodging or whatever. And their patients who are flying from other parts of the country who come here where they don’t realize that their CAR T program actually can cover the cost of their flights when they’re going back and forth. So, yeah. So, it’s things like that.

Tips for Making Treatment Decisions WITH Your DLBCL Team

May 4, 2022/in Diffuse Large B-Cell Lymphoma (DLBCL), DLBCL Newly Diagnosed, DLBCL Programs, DLBCL Toolkit, DLBCL Treatment TK, DLBCL Treatments and Clinical Trials, DLBCL Videos ND, DLBCL Videos TC /by Kara Rayburn

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Tips for Making Treatment Decisions WITH Your DLBCL Team from Patient Empowerment Network on Vimeo.

DLBCL expert, Dr. Jason Westin, explains shared decision-making and provides tips for engaging in your treatment decisions.

Dr. Jason Westin is the Director of Lymphoma Clinical Research in the Department of Lymphoma/Myeloma in the Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Westin, here.

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Transcript:

Katherine:

Lately, we’ve been hearing this term shared decision-making, which basically means the patients and clinicians collaborate to make healthcare decisions. And it can help patients take a more active role in their care. So, I’d like to get your thoughts on how best to make this process work. Are there questions that patients should consider asking about their proposed treatment plan?

Dr. Westin:

Definitely. And I think shared decision-making is something that we view to be critical. We want everybody on board to feel like they’ve got some sense of ownership of these decisions and that they’re involved in a way that’s meaningful. At the end of the day, the patients make the decisions about which treatments are right for them but they’re trusting their healthcare team to give them good advice. This is not something that patients have expertise in. This is often out of nowhere that somebody is newly diagnosed and this is not on their radar, not something that they ever thought that they’d be sitting in the chair talking about which type of therapy for this cancer.

And so, patients are often relying on the healthcare team to give them good advice. But it’s a fair question and it’s, I think, one that’s appropriate to ask. “Are there other treatment options that we should be talking about?” Basically, exploring, “Is this option you’re presenting the option or is this what you consider to be the best option.” Oftentimes physicians, and PAs, and nurse practitioners might filter information such that, “Yeah, there are other options but here’s why they’re bad. Here’s why they’re not right for you.”

But feeling that you have some clarity about why a treatment choice was made, I think, is often quite important. For first line DLBCL, there are less options to consider. But in the relapse space, there are lots of options. And those should be discussed. And sometimes the healthcare provider, a physician, might have their favorite that they have had good experience with treatment A and therefore they recommend treatment A to the next patient. But that may not always be the right treatment for a given patient.

There may be reasons to consider other treatments. And so, asking that question, “What else is out there? What other treatments are there? Anything else that we should be considering,” I think is a fair question to ask and an important one. And if the answer is, “No, there aren’t other treatment options. This is the one that we should choose,” at least you’re aware of that by asking that question. So, I think that’s an important one to clarify.

Who Are the Members of Your DLBCL Care Team?

May 4, 2022/in Diffuse Large B-Cell Lymphoma (DLBCL), DLBCL Basics TK, DLBCL Newly Diagnosed, DLBCL Programs, DLBCL Toolkit, DLBCL Treatments and Clinical Trials, DLBCL Videos ND, DLBCL Videos TC /by Kara Rayburn

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Who Are the Members of Your DLBCL Care Team? from Patient Empowerment Network on Vimeo.

Lymphoma expert Dr. Jason Westin describes the key members of a multidisciplinary DLBCL care team.

Dr. Jason Westin is the Director of Lymphoma Clinical Research in the Department of Lymphoma/Myeloma in the Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Westin, here.

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Transcript:

Katherine:

Today, we’re going to be learning about DLBCL treatment goals and how patients can be active members of their team. So, let’s start by understanding who is typically on a patient’s DLBCL healthcare team.

Dr. Westin:

It’s a good question. The members of the DLBCL healthcare team usually consist of a physician – and this person usually would start the process of saying, “This is something. I don’t know what’s going on with this mass or this pain you’re having. Let’s get some imaging. Let’s get a biopsy to figure out what’s going on.” There would often be a nurse as a member of the team. And the nurse usually provides a critical service in terms of help – facilitating patients to understanding what’s going on and to work with the healthcare team directly to provide excellent patient care.

And eventually, there would often be a pharmacist involved in terms of the chemotherapy or treatments that are administered to help review those and work with the physician and the nurse directly. Those would be the main members of the healthcare team. Occasionally, there might be a social worker or there might be other care providers that are involved. But usually, it’s the physician, the nurse. And then, sometimes the physician extender, such as a PA or a nurse practitioner.

Katherine:

Okay. What do you feel is the patient’s role as a team member.

Dr. Westin:

Patients are a critical part of our team and are often the decider of what goes on. The physicians, nurses, PAs, pharmacists – our jobs are to help educate the patient and to help the patient to decide what the best treatment is.

Ultimately, it’s the patient’s responsibility to understand what’s going on, to ask good questions, and then to make a decision about what treatments are best for them.

Katherine:

What role do caregivers take?

Dr. Westin:

Caregivers often play a very important role, and it’s variable from person to person how involved a caregiver is. But if patients have symptoms or side effects of treatment, caregivers are often critical to make sure patients get the appropriate medical care that they need. Some treatments may have more potential for side effects than others. Sometimes, caregivers are essential to actually stay with a patient, even during admission to the hospital to make sure the patients are monitored closely.

And we may talk about different treatments later in the interview. But at our center, sometimes we even mandate that there are caregivers involved in the sense of staying with the patient in the hospital for certain therapy types. But in general, being a supportive family member or caregiver, it’s a good thing to have even if we don’t have a lot of toxicity for emotional and physical support. But sometimes it’s really important to help manage toxicities.

What Is the Patient’s Role in WM Treatment Decisions?

April 7, 2022/in NHL Newly Diagnosed, NHL Videos ND, NHL Videos WPS, NHL Whole Patient Support, Non-Hodgkin's Lymphoma, Waldenstrom, Waldenstrom Newly Diagnosed, Waldenstrom Video ND, Waldenstrom Video WPS, Waldenstrom Whole Patient Support, Waldenstrom's Advocacy TK, Waldenstrom's Programs, Waldenstrom's Toolkit /by Kara Rayburn

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What Is the Patient’s Role in WM Treatment Decisions? from Patient Empowerment Network on Vimeo.

Dr. Jorge Castillo discusses the patient’s role in their Waldenström macroglobulinemia (WM) treatment decisions and shares advice encouraging patients to be active participants in their care.

Dr. Jorge Castillo is Clinical Director at the Bing Center for Waldenström Macroglobulinemia Dana-Farber Cancer Institute and Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Castillo, here.

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Transcript:

Katherine:

What do you feel is the patient’s role in treatment decisions?

Dr. Castillo:

From my perspective, the patient’s role is very important. I need, as a physician, that the patient feels that it’s part of the team here. So, when patients come to see me, I strongly encourage patients to bring as many people as they want with them. If they want somebody on FaceTime at the same time, I’m happy with that too. And that helps because the amount of data that we provide, the amount of information that we provide, is a lot in terms of quantity. But sometimes, it’s not easy to understand when you just hear it one time, right?

So, having somebody taking notes, having somebody else taking notes, having somebody else listening, somebody else asking questions, and then somebody else explaining back to the patient – the patient is looking for the best for them, but if he’s also affected by the whole process. It would be naïve to feel – or to think – that somebody was told they have an incurable blood cancer, and they are completely paying attention to everything you’re saying, after you said something like that.

So, I think it’s important for patients to be there with family, friends, or whoever wants to be there to help out. I think that’s a really important aspect. Then, number two is you need to know about your own disease. And I am fortunate to work with a group of patients who are highly educated, to the point that they get to know more about their disease than their own doctor. And I think that’s key. I think that’s important. For me, that is not threatening or challenging. I think that is actually a good thing.

And that way, I can have a more direct conversation, meaningful, because I understand that the patient is understanding what I am saying, and we are trying to speak the same language, so I think that is key also. So, bottom line, I think education from the patient perspective, involvement of their care, I think that’s key so they can be their own best advocates.

There is going to be a lot of – since it’s a rare disease, there’s going to be a lot of backs and forths with different physicians. Some physicians are going to be more intensive and trying to treat when the patient doesn’t need to be treated. The opposite is also true in which a patient, they do need treatment, and the physicians are saying, “No, we can wait a little bit longer.” And again, that has nothing to do with the quality of the doctor. It’s just the fact that the disease is rare, and to keep up with it is very difficult. So, the patient being their best advocate is actually a very important role that they should have.

Katherine:

Knowledge is power.

Dr. Castillo:

That’s right.

January 2022 Digital Health Round Up

January 19, 2022/in PEN Blog /by Dana Kaiser

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Technology has changed the face of healthcare; this new year begins with exciting advances that positively affect the patient and the provider. Providers embracing telemedicine are creating opportunities to change the entire patient experience. The use of AI (artificial intelligence) can take care of tasks that free up more time for providers to spend with the patients. AI is also being used to help identify patients with certain head and neck cancers, that would benefit from lower doses of radiation, decreasing radiation toxicity and side effects for patients.

Healthcare Technology

If you can achieve the right mix of high-tech, high-touch options, you’ve hit the sweet spot for improving equity and accessibility, patient engagement, health outcomes, loyalty, and profitability, reports MedCityNews.com. Telemedicine offers patients a way to seek medical care without missing work and often from the comfort of their own home. With proper education, telemedicine makes healthcare accessible to everyone regardless of language barriers or disabilities. Telemedicine does not replace the hands-on approach of medicine, but it offers interesting and convenient options for patients. During the pandemic, telemedicine has proven to be a powerful tool to stay in touch with patients and keep everyone safer. Find more information here.

Artificial Intelligence to Support Both Caregivers and Patients

In healthcare, as in all fields, the job of AI is not to replace humans, but rather to perform repetitive, tedious and time-consuming tasks so that people don’t have to – freeing time for tasks that require personal touch, reports Enterpeneur.com. AI uses algorithms to predict patient volumes for hospitals, anticipating appropriate staffing for caregivers. AI can quickly sort through images and information saving providers time to get them the appropriate information faster. Humans will always be the ultimate decision makers, but AI can be a tool to help them provide better care. With the increasing demands on providers, time with patients is the most important aspect of their job. Artificial intelligence allows for more efficient use of that time, allowing for better patient outcomes. Find more information here.

Artificial Intelligence to Help Patients Avoid Excessive Radiation

A Case Western Reserve University led team of scientists has used artificial intelligence (AI) to identify which patients with certain head and neck cancers would benefit from reducing the intensity of treatments such as radiation therapy and chemotherapy, reports MedicalXpress.com. The AI program analyzed hundreds of tissue samples from patients with a particular type of head and neck cancer. It was able to pick out some of those patients that could have done well with a lower dose of radiation. Reducing the level of chemotherapy and radiation can significantly reduce some of the toxic side effects of the treatments. Using Artificial Intelligence to achieve this can give the patient better quality of life. There is hope in the future that this application can be used in clinical trials and eventually with other types of cancer as well. Find more information here.

Technology is an important partner to healthcare providers and patients. Every day there are great advances in treatment due to artificial intelligence. The potential of telemedicine is expanding and helpful in our daily lives. Technology is an area of healthcare to follow and see all the benefits it will provide for patients and caregivers alike.

Dana Kaiser

Dana Kaiser is a professional writer and a strong patient advocate, learning from experience during her 22-year career as a nurse.

What Role Can Care Partners Play in Advocacy?

January 10, 2022/in Caregiving, Diahanna Vallentine, PEN Blog, Sherea Cary /by Kara Rayburn

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What Role Can Care Partners Play in Advocacy? from Patient Empowerment Network on Vimeo.

Care partners can play many roles in advocacy. Diahanna, Sherea, and Patricia discuss that as a care partner you have to stay knowledgeable and up to date about various treatments and discussions happening in your loved one’s disease area. Diahanna shares a time where she had to advocate for her late husband by speaking up to the nurse and nearly saving her husband’s life. She also expresses that as care partners, you cannot be afraid to ask questions on behalf of your loved one.

Care Partner Tips for Communicating with Healthcare Teams

January 10, 2022/in Caregiving, Diahanna Vallentine, Patient Empowerment, PEN Blog, Sherea Cary /by Kara Rayburn

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Ensure that you are in a position to ask the right questions of your healthcare team. Diahanna suggests familiarizing yourself with various online resources so you are aware of the potential needs of your loved ones. Watch as care partners, Diahanna, Sherea and Patricia share more crucial tips to help others communicate with one’s healthcare team.

Resources for New Care Partners

January 10, 2022/in Care Partner Resources Video, Caregiving, Diahanna Vallentine, PEN Blog, Sherea Cary /by Kara Rayburn

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Sherea explains that you cannot move forward, unless you are able to acknowledge all the feelings that may come with the initial diagnosis of your loved one. Watch as care partners Diahanna, Sherea, and Patricia also share their tips and go-to online resources for new care partners.

Is There a Difference Between Care Partner vs Caregiver?

January 7, 2022/in Caregiving, Diahanna Vallentine, PEN Blog, Sherea Cary /by Kara Rayburn

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Is There a Difference Between Care Partner vs Caregiver? from Patient Empowerment Network on Vimeo.

The term caregiver is generally more recognized around the world. Care partners Diahanna, Sherea, and Patricia share that being a care partner is generally more intimate than being a caregiver. Care partners are those who are taking care of family members and loved ones whom they’ve known before any initial diagnosis.

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January 2022 Digital Health Round Up

Healthcare Technology

Artificial Intelligence to Support Both Caregivers and Patients

Artificial Intelligence to Help Patients Avoid Excessive Radiation

What Role Can Care Partners Play in Advocacy?

Care Partner Tips for Communicating with Healthcare Teams

Resources for New Care Partners

Is There a Difference Between Care Partner vs Caregiver?

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Artificial Intelligence to Support Both Caregivers and Patients

Artificial Intelligence to Help Patients Avoid Excessive Radiation

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CONNECT WITH US