Tag Archive for: empowerment

Be Empowered in Your Care

Be Empowered in Your Care  from Patient Empowerment Network on Vimeo.

When patients are empowered, they feel informed and confident when talking to their healthcare team about their care. Bladder cancer expert Dr. Fern Anari describes how she empowers her patients.

Dr. Fern M. Anari is a genitourinary medical oncologist and assistant professor in the department of hematology/oncology at Fox Chase Cancer Center. Learn more about Dr. Anari, here.

See More From The Pro-Active Bladder Cancer Patient Toolkit

Related Programs:

Who Should Be on Your Bladder Cancer Care Team_

Who Should Be on Your Bladder Cancer Team?

Key Advice for Newly Diagnosed Bladder Cancer Patients

Key Advice for Newly Diagnosed Bladder Cancer Patients

The Importance of Patient Self-Advocacy in Bladder Cancer Treatment


Transcript:

Katherine Banwell:

When patients are empowered, they feel informed and confident when talking to their healthcare team about their care. As an oncologist treating bladder cancer, how do you empower your patients?  

Dr. Anari:

There are great online references that will help. Often, doctors will tell their patients not to Google. But that’s not always the right thing. I just think you just have to provide them with the right resources. So, through our cancer center and through many cancer centers, there’s patient advocacy groups. There are support groups. So, those are great places to get information.  

There’s also something called the Bladder Cancer Advocacy Network, which has great information for both physicians and for patients and really helps guide people through their journey and give them a little bit more information that then helps guide questions when they do see their doctors.  

Six Ways the digital sherpa™ Train-the-Trainer Program Can Empower Your Members

The Patient Empowerment Network digital sherpa™ program empowers mostly older cancer patients to improve treatment outcomes through digital technology. Program participants learn skills including identifying credible online resources, using telemedicine and their patient portals, and how to use mobile devices to improve health.

Benefits program participants have learned include how to:

1. Use Patient Portals

Using patient portals can be helpful to save time for common tasks. Participants learn about booking health provider appointments, requesting prescription refills, and getting lab test results.

2. Perform Google Searches

Doing Google searches can be helpful when carried out with a watchful eye. Participants learn about performing Google searches, finding reliable sources, adding bookmarks for favorite websites, and copying and sharing links with others.

3. Utilize Social Media

Twitter and Facebook social media tools can be useful for those seeking more information and support. Participants learn the nuts and bolts of both tools including how to set up an account, checking and maintaining privacy settings, how to post or tweet, finding experts, connecting to online support communities, using hashtags and tweetchats, and posting photos.

4. Benefit From Telemedicine

Learning about telemedicine and best practices can be helpful for optimal visits. Program participants learn how to install video conferencing tools, how to be prepared for a telehealth visit, and who to contact if they run into issues.

5. Improve Health Travel

Using mobile apps can assist patients and care partners in health-related travel. Participants learn about the apps Uber and Lyft and are shown how to set up accounts.

6. Engage With Patient Communities

Engaging with patient communities can be reassuring for patients and care partners alike. Program participants learn about patient communities such as Inspire, PatientsLikeMe, MyLifeline, StupidCancer, HealthUnlocked, Cancer Support Community and how to join support groups in them.

By taking part in the digital sherpa™ train-the-trainer program, participants can learn valuable skills to gain confidence and to improve treatment outcomes through digital technology.

Why Non-Small Cell Lung Cancer Patients Should Speak Up About Symptoms and Side Effects

Why Non-Small Cell Lung Cancer Patients Should Speak Up About Symptoms and Side Effects from Patient Empowerment Network on Vimeo.

Dr. David Carbone, a lung cancer expert, emphasizes the importance of speaking up, advocating for yourself, and being an active member of your non-small cell lung cancer health care team. 

Dr. David Carbone is a medical oncologist and professor of internal medicine at The Ohio State University. Dr. Carbone is also co-leader of the Translational Therapeutics Program at the OSUCCC – James, where serves as director of the Thoracic Oncology Center. Learn more about Dr. Carbone, here.

See More From INSIST! Lung Cancer

Related Resources:

What Treatments Are Available for Non-Small Cell Lung Cancer?

How Is Non-Small Cell Lung Cancer Staged?

Immunotherapy for Lung Cancer Treatment: What to Expect

Immunotherapy for Lung Cancer Treatment: What to Expect


Transcript:

Katherine:                  

Patients can sometimes feel like they’re bothering their healthcare team with their comments and questions. Why is it important for patients to speak up, and become a partner in their own care? 

Dr. Carbone:              

So, it’s a fact that when patients get the diagnosis of lung cancer, everything changes in their lives. They suddenly have a whole new vocabulary thrown at them. It’s like their doctor is speaking French to them. They have to trust their life to a person they’ve never met before, and a whole cadre of people coming in and talking to them and poking them and running through scanners. 

It’s very difficult for someone whose biggest concern was what to make for dinner that night, and now has a diagnosis of lung cancer, to really comprehend what’s going on. And lung cancer is complicated, so I recommend that patients really try their best to have at least a basic understanding of what’s going on, where their cancer is. I always show the patient their scans.  

“Your cancer is here; this is what it looks like; that’s why you’re having that pain over there, because you have this spot here. Your genetic testing shows this and this, and that’s why it’s important, and that’s why we’re using this drug to match this mutation.” And these are things patients will understand if doctors will explain it to them.  

And similarly, the side effects. Lung cancer patients tend to be tough people. They’ll say, “It’s not so bad, I feel better; but the side effect is not so bad. I’m just not going to tell them.” And it even happens in clinic that they’ll tell me they feel fine, and then they’ll tell the nurse that they hurt in their left elbow. And I have to go back in and ask them some more questions on that.  

So, it’s extremely important to feel comfortable in communicating with your doctor, asking questions; “Why am I getting this scan? Why are we using this treatment? Is this the best treatment? Are there clinical trials available? I have this new symptom, x, y, z,” because symptoms are often much easier to treat when you catch them early than when you catch them late.  

And you don’t get a medal for being a tough guy in this situation. Tell your doctor if you have pain, and they can manage it. Tell them if you’re short of breath, and they can help you feel better. They can’t help you if you don’t tell them, and you are your own best advocate in this situation. Ask questions about the treatment, and why that’s the best one for you; and, as I said, about clinical trials. 

Katherine:                  

Excellent. Thank you so much. It’s important for people to remember that.  

Questions to Ask Your Doctor About Essential Myeloma Testing

Questions to Ask Your Doctor About Essential Myeloma Testing from Patient Empowerment Network on Vimeo.

Being empowered to speak up about your myeloma care is not only important but essential. Dr. Saad Usmani, a myeloma expert, shares advice for partnering with your doctor and provides key questions to ask about myeloma test results.

Dr. Saad Usmani is the Chief of Myeloma Service at Memorial Sloan Kettering Cancer Center in New York City. Learn more about Dr. Usmani, here.

See More From INSIST! Myeloma


Related Programs:

How Does Essential Testing Affect Myeloma Care and Treatment (1)

How Does Essential Testing Affect Myeloma Care and Treatment? 

How Is Minimal Residual Disease (MRD) Testing Used in Myeloma Care_

How Is Minimal Residual Disease (MRD) Testing Used in Myeloma Care? 

What Should You Ask Your Doctor About Myeloma Testing_

What Should You Ask Your Doctor About Myeloma Testing?


Transcript:

Katherine Banwell:

If patients are concerned about voicing their concerns and I think many of us are, why should they feel like they’re a partner in their care?

Dr. Usmani:

Well, that’s the only way that they will feel empowered. And we have to remember why we’re doing this, right? So, we’re doing this so that we can alleviate the burden of this disease from our patients and give them as good of quality of life as possible. And it’s a partnership. And in that partnership, the patient is the most important partner. Everyone else – it’s like you’re the main character.

The patient’s the main character in the movie. And all of us are supporting cast around them. I think that’s how you have to approach it. That’s how – that’s why it’s very important. And of course, patients – we’re not expecting our patients to read the papers and be knowledgeable about everything. But have a general sense of what to expect and it will be – so, having a more educated patient helps them deal with treatments better and have realistic expectations of what’s to come.

Katherine Banwell:

Right. As I mentioned at the start of this program, Dr. Usmani, patients should insist on essential myeloma testing prior to choosing a treatment. As we conclude, I think it’s important to point out that some patients may not know if that can even receive these important tests. So, what key question should they ask their physician about them?

Dr. Usmani:

So, you should be asking your physician about what kind of myeloma you have? What stage of myeloma you have? How much involvement in the bones you have? Do you have any chromosome abnormalities or any features of disease that put you at a higher chance of the myeloma coming back?

As you ask these questions, your physician will be prompted to think about “Okay. Am I missing something in my work?” And you can always ask is there anything else you need to do in terms of testing to give you a better idea of how best to approach my treatment and follow-up. 

How Speaking Up Can Positively Impact Your Colon Cancer Care

How Speaking Up Can Positively Impact Your Colon Cancer Care from Patient Empowerment Network on Vimeo.

Why should you advocate for the best care for you? Dr. Smitha Krishnamurthi, a colon cancer specialist from Cleveland Clinic, provides key advice to access better care, including the value of second opinions, and why you should feel empowered to speak up.

Dr. Smitha Krishnamurthi is a gastrointestinal medical oncologist at the Cleveland Clinic. Learn more about Dr. Krishnamurthi here.

See More From The Pro-Active Colon Cancer Patient Toolkit


Related Resources:

Should Your Family Members Be Screened for Colon Cancer?


Transcript:

Katherine Banwell:

What is your advice to patients who may feel like they’re hurting feelings by seeking a specialist or even a second opinion?

Dr. Krishnamurthi:

I would advise patients to not worry about that at all. I think that any one of us diagnosed with colorectal cancer would want a second opinion, would want to make sure that we’re getting an opinion from a high-volume cancer. Working here are Cleveland Clinic, I have the luxury of focusing on treatment of gastrointestinal cancers, whereas my colleagues who are in the community are treating patients with all different types of cancers. They have to be knowledgeable in all different types of cancers.

I think that’s actually much harder. I think that if your oncologist is not a specialist, the oncologist may actually appreciate having an opinion from a specialist, which helps them as well.

I think that if the doctor is going to be offended, then that’s probably not the right doctor to see. I think it’s important to just advocate for oneself and go for it.

Katherine Banwell:

That leads to my next question. What advice do you have about self-advocacy, about speaking up for yourself as a patient?

Dr. Krishnamurthi:

I think that’s very important to feel comfortable with your treatment team, with the doctor, nurse, nurse practitioner. If you have the luxury where you have choices where you live, seek out somebody who you can really connect with. I think it’s very important for the treating team to know what the patient is going through.

We have to know how the treatment is going so that we’re dosing properly, making adjustments. We want to know what our patient’s goals are so that we’re providing the best quality care.

I think it’s helpful to bring somebody to appointments. Or if you can’t bring somebody, you’ll call them on the phone. We’re doing that a lot now. People are joining by video call or even speaker phone. Many offices will have a speakerphone. You can ask to have somebody called on your behalf. Especially with COVID and the restricted visitation. Let’s get people on the phone. Somebody else to listen for you. For the patient, I mean, and to take notes. That really helps

Wondering how YOU can advance MPN research?

September is Blood Cancer Awareness Month and we’ve spent the month focusing on ways you can become a more empowered patient. If you missed our recent webinar: What YOU can do to advance MPN Research, the replay is now available. As always, we’d love to hear from you about ways you’ve empowered yourself!