PEN Blog Archives

How Can You Insist on Better Prostate Cancer Care?

How Can You Insist on Better Prostate Cancer Care? from Patient Empowerment Network on Vimeo

How can prostate cancer patients access the best care in an evolving treatment landscape? Prostate cancer survivor Jim Schraidt shares his advice for staying up-to-date about treatment developments and for accessing support and resources

Jim Schraidt is a prostate cancer survivor and Chairman of the Board of Directors for Us TOO International. Learn more about Jim Schraidt here.

See More From INSIST! Prostate Cancer

Related Resources

How Does Us TOO International Support Prostate Cancer Patients and Their Loved Ones?

How Does Us TOO International Support Prostate Cancer Patients and Their Loved Ones?

How Could You Benefit from Joining a Prostate Cancer Support Group?

Newly Diagnosed with Prostate Cancer? Consider These Key Steps

Newly Diagnosed with Prostate Cancer? Consider These Key Steps

 


Transcript:

Jim Schraidt:              

The really great news is that sort of across the board, from early stage disease through metastatic prostate cancer patients, there are advances that are occurring very rapidly at this point, so rapidly that practitioners have difficulty keeping up with them.

And, honestly, those of us who do some patients support likewise have difficulty keeping up with them. I think, once again, these support groups can serve a useful function in that you have specific questions, you hear about it, you bring together a group of individuals, and somebody in that group may know something about it.

And they can tell you, they can give you information, or they can give you direct Internet links where you can find more information. The other source of information is some of the Us TOO publications, our monthly hot sheet, as well as the website.

There are a couple other websites that I personally regard as excellent. The first would be the Prostate Cancer Foundation. The second would be Prostate Cancer Research Institute. And then finally, ZERO. So, I think if you attend a support group, and talk to other guys, and look at some of these websites, I think that’s a very good starting point for research and trying to get the best and most up-to-date information possible.

There’s a lot of progress being made across the disease spectrum, and it’s very exciting. I mean, for many years, all we had was surgery, radiation, and hormone therapy. But new things are coming online all the time. There are immunotherapies that are frequently genetically based. And there’s new knowledge about the disease itself and making active surveillance available to more patients.

And this is extremely critical because many men can go on with prostate cancer, with low-grade disease, really for their entire lives, and avoid the side effects of treatment.

And even if they don’t, if they delay definitive treatment for a period of years, there may be something new that comes down the pike that is both effective and has a better side-effect profile. This is the kind of research that is a part of what Prostate Cancer Foundation is funding.

So, there’s a lot out there. There’s a lot that’s happening. And I think that should give encouragement to prostate cancer patients. In terms of somebody who is later in the process and having difficulty coping with side effects or disease progression, I think the encouragement is that there are people out there that you can talk to about it, that you’re really not alone, and there are people out there that are anxious to help you, to hear from you, and provide assistance.

For those of us who have been at it a while, we find that helping others enhances our own healing. And so, don’t be reticent about asking for help. Because it’s out there, and it can really make a difference.

The Value of PEN – Free Resources For Cancer Patients

Free Resources for Cancer Patients from Patient Empowerment Network on Vimeo.

The best cancer care comes when a patient is empowered with knowledge and the resources to know what questions to ask and when to ask them. Video three, in a five-part series about the Value of Patient Empowerment Network (PEN), highlights the free resources PEN offers for patients and their loved ones. Featured in the video are ways in which patients can easily engage with their doctors and other members of their care and support teams. From the comprehensive activity guide designed to make patients feel more relaxed and less overwhelmed during their cancer journey, to the scripted questions patients can use when meeting with their doctors, PEN is here to help.

PEN Board Member Nancy Gatschet is a cancer survivor, and she speaks from experience when she says that PEN is a tool to empowerment. She emphasizes that through the resources provided by PEN, cancer patients become comfortable communicating needs and feelings with doctors, friends, and other members of their support network. She says it’s important for cancer patients to speak up for themselves and that PEN helps patients do just that. Part of the free resources available through PEN 24 hours a day, seven days a week are questions and scripts that patients can use to prepare themselves to speak with their doctors. PEN helps patients identify the critical questions they need to ask and offers suggestions about how to ask them.

PEN encourages all patients to be empowered, but for many people a cancer diagnosis can be overwhelming. Board Member Asalia Goldberg says that there are so many unknowns that patients face when they are about to enter treatment, but if they are equipped with not only answers, but also the critical questions they need to ask, they become their own voice and their own advocate, and they become empowered through their cancer journey.

Through resources like the scripts and activity guide provided by PEN, patients can have more productive doctor appointments. There’s even a checklist for patients to use to make sure they didn’t forget anything. Learn more about the many free resources available through PEN’s website, workshops, webinars, social media channels, and network managers. Watch the video and find out how you can get involved.

9 Tips to Help You Build a Better Advocacy Blog

Do you blog about your illness?

Many patients find blogging about their condition is not only therapeutic, but is also a great way to connect with others going through similar experiences. 

A blog can also be a powerful advocacy tool – a way to raise awareness, build community and show commitment and passion for the work you do.

This month, I’d like to share 9 ways to help you build a better blog. If you’re new to blogging, these tips will help steer you in the right direction. If you’re a seasoned blogger, why not use this as an opportunity to take stock to see if you’re still on track to make an impact with your blog.

1.Perfect Your About Page

For new visitors to your blog, this will be one of the first pages they will visit, so it’s worth taking time to make it as professional as possible. Use this space to share the story of why you do what you do to advocate for disease awareness and educate and support your community.

2. Check Your Blog’s Load Speed

Does your blog load quickly? A good site will load in 2 seconds. If your blog is taking longer than that, consider that around 40% of people will leave a site if it doesn’t load in 3 seconds. You can check your blog’s loading speed with a tool like GTMetrix.com.

Insider Tip: If you like to add lots of images to your blog, be aware that large images can slow your blog down. Resizing your images can speed up the loading time. Upload your image to Picresize.com for quick and easy resizing.

3. Declutter Your Sidebar

Does your blog have a sidebar? Has it become crowded with widgets? Then it’s time to declutter Marie Kondo style. Get rid of anything that doesn’t add something valuable to the reader’s experience.

4. Showcase Popular Content

One thing that you should keep on your sidebar is a list of your most popular content. Use this space to showcase your best writing. And be sure to put hyperlinks in each of your posts that direct people to other popular posts on the same topic.

5. Make It Easy For Readers to Find Information on Your Site

Providing helpful information is great, but you also need to be sure that readers can find that information. By adding categories and tags to your posts, you make it easy for readers to find the information they need when they come to your blog. It also increases views on your other posts tagged with the same keywords.

6. Create An Email Sign-Up Form

Encourage readers to sign up to receive your latest posts. Nancy Stordahl, who blogs at NancysPoint.com, advises “anyone who wants to increase readership to her/his blog to consider sending out a monthly or weekly email with links to new posts and possibly one or two older ones. “I became very frustrated with Facebook’s algorithms because it seemed no one was seeing posts I shared. Having your own email list puts you and your readers in control.”

7. Add Social Sharing Buttons

By making it easy for visitors to your blog to share your content, you increase the likelihood that they will take this action. When more people share your content, you increase the chance of driving more visitors to your blog, and having your content seen by more people.

8. Choose Typography Carefully

Typography is made up of elements such as font type and size, kerning (white space between individual characters or letters), and tracking and spacing. It’s an important factor in making your content more readable for visitors to your site.

9. Backup Your Blog

Finally, you’ve put a lot of effort and time into your blog and you don’t want to risk losing all your great content. You never know when your blog might get hacked, and the best defense is scheduling regular backups using a plug-in like BackWPup.

Happy Blogging!

What Is the Patient’s Role in Making AML Treatment Decisions?

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

What role do acute myeloid leukemia (AML) patients have in their treatment decisions? Dr. Pinkal Desai explains factors that go into decision-making and how patients may help guide the treatment option that’s best for them.

Dr. Pinkal Desai is Assistant Professor of Medicine at Weill Cornell Medical College and a hematologist specializing in acute myeloid leukemia (AML) at Weill Cornell Medicine. Learn more about Dr. Desai, here.

Download Program Resource Guide

See More From The Pro-Active AML Patient Toolki

Related Resources:

What Are the Goals of AML Treatment?

What Are the Goals of AML Treatment?

Choosing an AML Treatment Path: What Should You Consider?

Choosing an AML Treatment Path: What Should You Consider?

Being Pro-Active in Your Care: Key AML Testing to Advocate For

Transcript:

Katherine:                  

What is the patient’s role in this decision?

Dr. Desai:                   

I think it’s important for patients to understand why the decisions are being made or what goes into the decision-making. Because the patients would appreciate, if they know, that these are the genetic subtypes, and this would be the best sort of approach for them.

So, from a patient’s side, their role is, 1) to understand all the factors that go into the decision-making. And the second aspect, which is important, is their own values and their own decision on what treatment they would like to have. 

So, there are – sometimes, it’s very white and black. There are many times where it’s a gray zone, in the sense that there is a best treatment that’s available, that the oncologist would discuss, but it’s also possible to choose between two different kinds of therapy options.

If the patient is eligible, for example, for both intensive and non-intensive treatment, then what would they prefer based on what’s going on in their life? Whether they want to be hospitalized for 30 days for intensive induction or not? Do they want to do this out-patient? A lot of these things are important, and they have to be involved with this.

The third aspect, which is very important from a patient standpoint, is the need for transplant. So, patients who are younger and transplant eligible for leukemia that has a higher risk of coming back, we do recommend a stem cell transplant, so that the patients have to understand the process of stem cell transplant.

Sometimes, it’s slam dunk that a transplant is needed, but there are certain times where you could or could not go for it, and this is where the patient’s choices and values are extremely important, that once they hear all of this information, they would decide whether they should or should not go for stem cell transplant.

The Value of PEN: Learn More about Your Diagnosis

Video Two of a Five-Part Series

Some of the most comprehensive tools and resources to help and support cancer patients and care partners are available through Patient Empowerment Network (PEN). Video two of the five-part series, The Power of PEN, focuses on the disease-specific networks and resources that PEN offers patients and care partners to learn more about their diagnosis. These resources provide essential information so that patients are better able to understand their diseases, stay informed about treatments and research regarding their diseases, and be active partners in care decisions. The resources in the PEN network are all available for free, with access 24 hours a day, every day.

In this second video, you will meet members of the PEN community who have first-hand knowledge of the benefits PEN has to offer. Board Member Asalia Goldberg notes that the PEN website can help empower and support patients during every piece of their cancer journey.

The PEN website is also useful for care partners, says PEN Network Manager Coordinator Nykema Mpama. She adds that care partners, as well as patients, have access to PEN’s disease network online library, which offers in-depth information and resources to use during a healthcare journey.

PEN’s library of information and resources provides a great deal of disease-specific information, adds PEN MPN Network Manager Jeff Bushnell, who is also a care partner. The wealth of information is collected from doctors and professionals in their fields, and from patients and caregivers.

The PEN resources are a gamechanger for cancer patients who previously didn’t have access to a hub of resources. PEN Board Member Nancy Gatschet shares that when she was diagnosed with lung cancer in 2006, there was no access to the types of tools offered by PEN. She says she is grateful that PEN provides the tools patients need to become educated about their diseases and to feel empowered. Knowledge is every patient’s superpower.

PEN is here to help. Watch the second video and find out how you can get involved.

Learn More about Your Diagnosis from Patient Empowerment Network on Vimeo.


 

How an MPN Patient and Caregiver Make the Most of Life

How an MPN Patient and Caregiver Make the Most of Life from Patient Empowerment Network on Vimeo.

 MPN Network Manager Summer who lives with myelofibrosis and her care partner Jeff discuss the importance of not putting your life on hold. Summer continues to work on her comedy routine and Jeff has been enjoying ZOOM photography classes. Watch to hear how else Summer and Jeff continue to make the most of life despite any challenges that may present itself. 

“We have not put our lives on hold during COVID or as a result of Summer’s MF diagnosis. Our challenge to you is to do the same.” 

Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org

The Caregiver Impact: A Vital Part of Healthcare

Carly FlumerCarly Flumer is a young woman who was diagnosed with stage I papillary thyroid cancer at the age of 27. She recently received her Master’s degree from Boston University […]

Braving the Caregiver Storm

As I sit here looking out the window at the snow that is beginning to fall, I am transported back to January 2011 when I was 28 and my 35 year old husband was diagnosed with leukemia. I was thrown into a snow storm I was definitely not prepared for nor did I think I’d be in. I had little visibility in front of me as the snow fell and flew all around me. I knew cancer was something that had been around for a very long time, and that the knowledge was out there…but as a young woman, I was standing in my own little snow globe without boots, a scarf, or mittens. I had my marriage that I wrapped around me like a warm coat, and held onto that while I attempted to find resources to guide me thorough this new life of mine.

My days of working full-time, then coming home to relax had been exchanged for quick trips to let the pets out after work, then jetting over to the hospital to spend a few hours with my husband before driving back home to spend a few minutes with my pets before going to bed and starting the cycle all over again. I was exhausted and had to figure out how to get warm, protect myself from the elements and survive!  However hard and unknown it all was, I found comfort in knowing that although I was the only young person I knew to go through what I was, millions of people had done it before and I could too. I didn’t know how I was going to do it, but knew I would somehow.

I began to gather resources online by spending hours upon hours late at night on the internet. I looked up financial resources to help with gas cards, how to navigate insurance, disability, and requested all of the brochures possible from the Leukemia and Lymphoma Society and the American Cancer Society. As I gained more knowledge, I felt myself slip into a warm pair of boots, feeling like I had more secure grounding. I was better informed and felt more armed to walk down the road of the cancer journey, despite still not being able to see through the masses of swirling snowflakes and at times, sleet.

I quickly realized that one of the most major parts of this journey was to take care of myself. At first it felt somewhat selfish, as my husband was the patient…however I had to figure out what worked best to keep my batteries charged and running, even when the snowy road threw my tires into a ditch. I started creating blog posts to inform and update our supporters on CaringBridge and Facebook, which allowed me to feel safe, supported and heard, while still having boundaries to not be overloaded via text, phone and email from all of those that wanted to know how things were going. This social support provided the needed warmth on my hands, giving me mittens to keep from getting frostbite from the dangerously low temperatures here in Minnesota.

I learned that taking time away for myself whether it be a cup of tea with a friend, taking a nap, a walk or binging a favorite TV show, was what I needed to do to be able to recharge my batteries to be in the right mental and physical space to be there for my loved one. Caregiver burnout is very real, and I often burned the candle at both ends, learning the hard way why self-care needed to be more of a priority in my life.  I don’t think that our supporters and loved ones can fully grasp or understand why it is so important to go to dinner with friends or to a movie or concert (outside of Covid-19 times of course), when your loved one is in the hospital or stuck at home.  What those that aren’t going through what you are in this crazy world of cancer don’t know is how hard it is to balance it all. Cancer is the belligerent relative at the holiday gathering that no one really knows how to deal with or control. They are there for better or worse, and it’s up to you to know how to balance and work with what you’ve been given.  When you take the time to understand and embrace what is….you can feel more at peace in taking the cancer process day by day, if not hour by hour.  You have to let the little things go, your house may not always be sparkly clean and everything may not get done- but the cancer patient has everything they need and you are a more balanced person to support them. Once I figured out how to balance things better, a scarf was wrapped around my neck, and I was better prepared for the snowstorm.

Cancer is definitely not something that is asked for, however with adequate resources, knowledge, social support and the practice of self-care, it is all doable.  I was able to take my experience as a cancer wife, then widow and beyond to create a book to share with the world on how I navigated the cancer world one day at a time, and live today with such thankfulness for the journey that brought me here today. I still absolutely love snow, and am excited for the snowstorm that is supposed to hit this afternoon with 4-7 inches, as I now know the ways to make sure I am storm ready to walk through the journeys in front of me, as you too, walk through your own snowstorms as well.


Embracing the New Normal

People are going back to work, kids are going back to school, and more and more businesses are opening up. But, at least for the time being, it looks like the coronavirus is here to stay, so we are going to have to make adjustments to our lives and embrace the new normal. Whether you are running out the door or cautiously putting a toe out, it’s important to remember that life in the time of Covid-19 is a marathon, not a sprint. There is no one way to move forward, but if you need help getting started, we’ve rounded up some of the best advice from our past PEN-Powered Activity Guides to get you started.

Stay Connected

Social distancing, or as we like to call it, physical distancing does not have to mean loneliness. Depending on your comfort level and/or the restrictions in your area, you can stay connected in a variety of ways. Some states have relaxed their stay-at-home orders, and you can now resume many normal face-to-face activities including dining out or returning to places of worship. If you live in one of those areas and want to take advantage of in-person meet-ups, make sure you continue to follow the health and safety guidelines by:

  • Wearing a mask
  • Frequently washing your hands
  • Avoid touching your face.

If you aren’t quite ready for face-to-face interaction, there are many ways to connect such as participating in online communities, using Facetime or Zoom to get together with friends, or joining a group such as a virtual book club. Find other ideas to stay connected in PEN-Powered Activity Guide (PPAG) II, page 1.

Utilize Technology

If the 2020 quarantine taught us anything it is that technology is one of our greatest modern-day assets. Thanks to technology we were able to continue to see doctors and therapists, see the world (PPAG II, page 27), keep up with our workouts (PPAG IV, page 34), and manage our accounts all without leaving our homes. As we move forward, the ways we used technology during quarantine are influencing our new normal, especially when it comes to our health. One of the best ways for patients to take charge of their health is to keep track of all aspects of it. 

Managing prescriptions (PPAG II, Page 4), paying bills, scheduling appointments, and keeping up with test results can all be done online, and now many of the time-consuming appointments of the past can be done through telemedicine saving both patients and doctors valuable time. Learn about telemedicine in detail from PPAG III, pages 7-21.

Practice Self-Care

Your schedule is likely filling up again making it hard for you to take time for yourself, but it’s important to recharge. Make time for relaxation (PPAG II, page 19) and exercise. There are substantial benefits from a walk around your neighborhood (PPAG II, page26), or a few minutes of chair yoga (PPAG III, page 25). Practicing mindfulness such as meditation or yoga can also benefit your overall health (PPAG IV, page 14). You don’t have to spend a lot of time on self-care, but the time you do spend will serve you well.

Stay Safe at Home

You may be leaving your home more now, but when you are at home it should feel like a safe space, especially when the world can feel a little unstable right now. Keep your environment as peaceful as possible by decluttering and surrounding yourself with things you love. You can find some other ways to make your home a sanctuary in PPAG IV, page 18.

Follow Best Practices

By now we all have heard the Centers for Disease Control’s guidelines to help prevent the spread of coronavirus. They include washing hands, wearing masks, and keeping your distance. In addition, you can help to stay healthy by eating well to improve immunity. Getting proper nutrients, prebiotics, probiotics, vitamins, and minerals are all ways to help your immunity. Learn more about eating for your immunity in PPAG IV, pages 26, 27, and 28. You can find other tips about eating well in PPAG III, pages 30 and 31.

One other thing to remember is that if you were doing something during your coronavirus quarantine that you enjoyed doing, keep doing it. New exercise program? Keep it up. Meditating to relax? Keep it up. Did you find a podcast you love? Make time to listen to it. If you need a new podcast, there’s a great list in PPAG II, pages 16 and 17. The bottom line is this: while things may look and feel different, the fundamentals remain the same. Eat Healthy, Be Active, Sleep Well, Wash Your Hands (PPAG IV, page 25).

Checking the Pulse on Multiple Myeloma Health Disparities

Even before the coronavirus pandemic arrived, health and patient support organizations made resolute efforts to examine and address health inequities for multiple myeloma patients in Black, Indigenous, and People of Color (BIPOC) communities. Diverse Health Hub and the Patient Empowerment Network partnered to help improve health outcomes for underserved myeloma patients through the Diverse Partners in Your Myeloma Care program. With a tumultuous year filled with the killing of George Floyd, social unrest, and coronavirus health disparities for BIPOC groups, these issues prompted us to focus on where things stand with multiple myeloma health disparities. We’ll take a look at what we know, what we’ve learned, and what help and resources are needed to continue advancing care for BIPOC myeloma patients.

Disparity Facts About BIPOC Myeloma Patients

  • Both Black Americans and Latina and Latino Americans show a myeloma precursor called MGUS, or monoclonal gammopathy of undetermined significance, more frequently than others—.88 percent in Black Americans, .44 percent in Latina and Latino Americans, and .22 percent in white Americans.

  • Although multiple myeloma is diagnosed at a younger age in both Black Americans and Latina and Latino Americans, both groups are less likely to receive a transplant and start treatment later than patients of other races.

  • Black Americans are actually known to have less aggressive myeloma, which should show better health outcomes—yet that is not the case.

multiple myeloma diagnosis.png

Learnings About BIPOC Myeloma Patients

Black and other BIPOC patients often have mistrust of doctors and researchers due to past experiments like the Tuskegee Study and Henrietta Lacks – whose now infamous immortal HeLa cells were taken without her consent. “If I were to walk into any community, African American community, or underserved community, that is one of the first things. They’re going to be mistrustful of me. And it’s a very difficult barrier to overcome. And that also leads over into African Americans contributing, being donors, African Americans participating in trials. It all feeds over into everything that’s done in the African American community or underserved community in regards to healthcare,” says patient navigator Diahanna Vallentine.

Barriers to care must be overcome according to Dr. Sikander Ailawadhi from the Mayo Clinic, “Myeloma patients who are African-American and Hispanic typically get to the right treatment much later. In a lot of cases they may not get to the right treatment at all. We also know that the burden of cost of care is much higher for minority patients.”

Improvements are happening in care as explained by Dr. Ajay Nooka from Emory University School of Medicine, “What’s really interesting in this meeting is that there has been a lot of large database integrations, including one database called the National Cancer Database (NCBD) where people have looked at 20-year history of how these treatments have panned out. Which of the minority populations or which subset of patients gained the most benefit over the last 20 years? And we see minorities have gotten a lot of improvement and a lot of access to care over the last 20 years, but that’s not the end of the story, we have to catch up a lot more.”

The Path to Health Equity

Although the additional focus on health inequities has started to improve access to care, there is still a critical need to raise awareness about the treatment gaps for myeloma patients in BIPOC populations. How can myeloma patients get the best care no matter where they live when factors like age, geography, socioeconomic status, ethnicity, gender, and insurance type heavily influence the path to better health outcomes?

Some valuable steps that patients, community leaders, and healthcare providers can take to improve care include:

  • Support organizations providing educational materials to patients that are target specific BIPOC groups

  • Patients and advocates making the BIPOC voice heard by asking for funds from community and political leaders to improve care

  • Healthcare providers developing relationships and partnerships with political leaders and support organizations to continue building momentum in improving patient care

  • Patients taking advantage of social workers and patient navigators at their clinics and support organizations

  • Patients, advocates, and healthcare providers working to increase clinical trial participation

  • Healthcare providers integrating cultural competency as a universal approach in the healthcare model

Resources like myeloma patient resource guides, informational graphics, and the Myeloma Coach section on the Myeloma Crowd website provide valuable information for patients. And though trust of clinical trials by BIPOC populations remains an issue, there are initiatives like Diversity in Clinical Trials Benefits Everyone. BIPOC patients can take action working together with medical researchers to increase clinical trial participation to improve and refine myeloma treatment developments for specific patient populations. If you want to explore options in your treatment, seek out resources that embrace diversity in clinical trials. The “All of Us” program is a public health initiative designed to remove the barriers that prevent inclusive access.

Participating in clinical trials not only will improve myeloma treatments down the line but also provides a minimum of standard of care treatment at no cost to the patient. It’s a win-win for both the patient who participates in the study and  also helps the progression of treatment for BIPOC patients diagnosed with myeloma in the future. Though progress has been made, patients, advocates, community leaders, and healthcare providers must take action to continue an upward movement to achieve equitable care that BIPOC myeloma patients deserve. Take advantage of the resources below and continue to visit our Multiple Myeloma Hub as we publish more on health equity developments for multiple myeloma.

Resources to Learn About Improving Myeloma Health Disparities

Disparities Around Health Technology Access for Subset of Myeloma Patients

Good News for Myeloma Treatment Today – Still Addressing Race-Associated Risks

2020 Shaping Up to Be a Big Year for Multiple Myeloma Treatment

How Can a Myeloma Patient Advocate/Financial Advisor Help

Is It Possible to Achieve Health Equity in Multiple Myeloma?

Are Myeloma Clinical Trials More Critical for African Americans?

A Multiple Myeloma Advocate’s Uphill Battle to Care

What Do Disparities in Multiple Myeloma Look Like?

How a Second Opinion Saved a Myeloma Patient’s Life 

Myths vs. Facts: Myeloma Health Disparities Care Infographic

How Can I Get the Best Multiple Myeloma Care No Matter Where I Live? Resource Guide

Diversity in Clinical Trials Benefits Everyone

Sources

How Can a Myeloma Patient Advocate/Financial Advisor Help? Patient Empowerment Network website. https://powerfulpatients.org/2020/08/17/how-can-a-myeloma-patient-advocate-financial-advisor-help/ Accessed October 19, 2020.

The Value of PEN: Your Path to Patient Empowerment

Start here. That is the message Patient Empowerment Network (PEN) is sending to cancer patients and care partners in the first of a series of five videos introducing PEN and its programs. Getting a cancer diagnosis can be a confusing and overwhelming time. No one gives you a handbook to help guide you through treatment options, doctor visits, and all the information coming your way, and it can be hard to know where to begin to make sense of it all. PEN is where you begin. Through free online resources that help to educate cancer patients and care partners about the options for the best possible care available, PEN serves to guide and support you step by step through your cancer journey.

In this first video you will be introduced to PEN through three of the members who serve on PEN’s diverse, talented, and entrepreneurial-minded board of directors. Two of the members are also cancer survivors. Board Member Scott Riccio describes PEN as the first step to take after someone is diagnosed with cancer. He says that PEN shows patients how to learn what to do through empowerment and building confidence.

In addition to educating patients, Board Member and Cancer Survivor Nancy Gatschet says, PEN plays the role of coach for your cancer journey marathon. She says PEN empowers you every step of the way. Board Secretary and Cancer Survivor Dr. Sajjad Iqbal adds that PEN uses knowledge to empower cancer patients. Knowledge about your illness helps you to be proactive in your treatment, which can lead to a better outcome and higher survival rates.

As you will learn throughout this video series, PEN has a variety of programs to help improve a patient’s journey, and these resources are completely free and available to you any time you need them. You can access PEN 24 hours a day, every day. Cancer doesn’t take time off and neither do the PEN resources.

So, start here. Watch the first video, find out how PEN can support you, and get involved.

Your Path to Patient Empowerment from Patient Empowerment Network on Vimeo.

#patientchat Highlights: Checking the Pulse on Patient Influencers

Last week we hosted a “Checking the Pulse on Patient Influencers” Empowered #patientchat, the community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

Patient Advocate/Activist Over Influencer

“Supporting patients (regardless of approach) is paramount”

What is a patient influencer?


Full Transcript

5 Ways a Patient Portal Can Improve Your Health Care Experience

A patient portal is an online application which gives patients access to personal health information stored in a health care organization’s electronic health records (EHR). If your doctor’s office offers a patient portal, consider these reasons why you should take advantage of the service.

Schedule Appointments

Use the portal to request or schedule appointments with your health care providers.

Request Refills

Giving you a convenient way to request refills should make it easier for you to keep up with refills and avoid lapses in the medication regimen. One study found that patients who use the portal to request refills of cholesterol medications took the medications more consistently and had better cholesterol levels (compared to patients who didn’t request the refills online).

View your Records

With a patient portal, you gain access to critical health information that was previously locked up in the EHR. A typical portal allows you to view your test results, medications, immunizations, and allergies. A summary of your doctor visits and educational materials may also be available. You have the right to view this information and use it to participate more fully in your health care.

Improve the Accuracy of Your Records

Keeping a list of your medications may seem like a straightforward task for a health care provider using an EHR. However, there are several reasons why your medication list may not be current and accurate, reflecting the name and dose of all the medications you are taking:

  • Human error in entering the medications into the EHR
  • Incomplete information at time of medication entry. For example, in your first visit to a doctor, maybe you remembered the names but not the doses of your medications.
  • Over-the-counter medications are frequently overlooked
  • Providers from multiple health organizations are prescribing medications for you
  • You stopped taking a medication

Fortunately, some portals give you the opportunity to submit corrections to your medication list and other parts of your record. This type of feedback loop is designed to improve the quality and safety of your care. In small pilot study in the Geisinger Health System in Pennsylvania, patients used the portal to submit corrections such as:

  • Add over-the-counter medications, vitamins, and supplements
  • Add medications prescribed by providers outside the Geisinger system
  • Remove medications they had stopped taking
  • Make corrections in the frequency and doses of medications

Communicate with Healthcare Team

A patient portal allows you to exchange secure messages with your healthcare provider. Rather than wait on hold or play phone tag, you can submit a question at your convenience. The response time may depend on the triage system used by the medical office for electronic messages, the content of your message, and the frequency with which your provider checks messages. A systematic review showed that patients who communicate electronically with their health care team can enjoy improvements in the following health dimensions:

  • Knowledge about their health condition
  • Ability to cope with and manage chronic health issues
  • Blood sugar, blood pressure, cholesterol, and weight (for patients with diabetes)
  • Control of asthma and quality of life (for patients with asthma)
  • Chronic back pain
  • Self-esteem and empowerment
  • Stress, depression, and loneliness

Note that electronic messaging isn’t appropriate in all medical situations.

When You Should (and Shouldn’t) Email Your Doctor

If you don’t already do so, you probably wish you could communicate with your doctor by email. It would align your health care experience with the rest of your increasingly digital life. Who wants to play phone tag or be put on hold when dealing with health issues?

Emailing your doctor is best done through a patient portal linked to your electronic health record (EHR). This allows your doctor to view your medical history, medications, and test results when responding to your email.

Patient-doctor email will likely increase as patient portals become more widespread and federal incentives for email are rolled out. Someday, emailing your doctor may become part of standard medical care.

However, email is not suitable for all health-related situations. Just as there are rules of etiquette for work-related emails, there are a few guidelines for emailing with your doctor. This article will outline a few scenarios where it is appropriate and not appropriate to email your doctor.

Email your Doctor if . . .

You have a straightforward question which can be answered in one or two exchanges.

You can save yourself an office visit by taking care of the issue by email. For example, if you just need a refill of a medication you have been taking for a long time, and you’re otherwise doing well, then an email may save you and the doctor some time. Depending on the nature of the request, the doctor may forward the message to another member of the medical team or office staff. Some offices designate a nurse or assistant to screen all the messages and assign them to the appropriate recipient.

Note that the email exchange may not be free, because doctors can bill for the time they spend responding to your email.

You have been waiting longer than expected to hear about test results or other pending issues. Doctors can easily get bogged down with their responsibilities. A timely reminder from you is helpful.

You forgot or needed some clarification of what your doctor said during a recent visit. It can be tough to remember or process everything that you and your doctor discussed. Sometimes it’s best to tie up the loose ends by email.

You can supply information that your doctor requested, such as home blood pressure readings, or results of a test you had at another health care facility.

Don’t Email Your Doctor if . . .

You are reporting sudden or severe symptoms which could indicate a medical emergency. You may not get an immediate response, and your condition could deteriorate as you wait for a reply. Email in a medical setting is only appropriate for non-emergencies.

You want to discuss a complex issue that would require a lengthy back-and-forth discussion. These issues are best discussed on the phone or in person.

You want to discuss an emotionally-sensitive topic which can’t fully be addressed by email. Facial expressions and body language are important in communication. Sometimes an old-fashioned office visit is best.

You are unsure of the security of the email transmission. Patient portals are designed to be secure. But if you’re emailing your doctor at “Doctor@mail.com”, the message could be intercepted.

Once your email becomes a part of your medical record, other people who have legitimate access to your record may see it.

How Can You Advocate for the Best Breast Cancer Care?

How Can You Advocate for the Best Breast Cancer Care? from Patient Empowerment Network on Vimeo.

Breast cancer expert Dr. Julie Gralow explains how you can advocate for the best metastatic breast cancer care, through speaking up, utilizing care team members and taking key steps to achieving better care.

Dr. Julie Gralow is the Jill Bennett Endowed Professor of Breast Medical Oncology at the University of Washington, Fred Hutchinson Cancer Research Center, and the Seattle Cancer Care Alliance. More about this expert here.

See More From INSIST! Metastatic Breast Cancer


Related Resources:

How Genetic Mutations Affect Metastatic Breast Cancer Disease Progression and Prognosis

Factors That Guide a Metastatic Breast Cancer Treatment Decision

What Could Metastatic Breast Cancer Genetic Testing Advances Mean for You?


Transcript:

Katherine:                  

For patients who may be hesitant to speak out for themselves and advocate for their own care and treatment, what advice do you have?

Dr. Gralow:                

You have a whole team who’s behind you, and I’m the MD on the team, but I’ve got a nurse practitioner, and a nurse, and a scheduler, and a social worker, and a nutritionist, and a physical therapy team, and financial counselors. I’ve got a whole team who works with me. And so, a patient might be hesitant to speak up during the actual appointment with their physician. It’s a short amount of time. I would recommend come into it with written-down questions because things go fast. You don’t get a lot of time with your doctor.

Things go fast, but don’t come in with 25 questions, either. Pick your top few that you want to get taken care of this visit because if you come in with 25 or 30, you’re going to lose the answers to most of them. Maybe bring somebody with you who’s an advocate and a listener for you who could be taking notes, so you can process and you don’t have to write it down, or ask if you can record it. It’s really important if you’re newly diagnosed or maybe there’s a progression and you’re going on a new treatment. That’s okay too.

But, I would also say you have a whole team behind you, so sometimes, if you don’t have time or if you’re hesitant to speak up in your doctor’s visit, you can ask the nurse, or maybe you can ask the social worker for help, even. See if there’s support groups around.

Interestingly, we’ve got a peer-to-peer network where patients can request to talk to somebody else who’s matched to them by some tumor features, and their stage, and things like that. Maybe finding somebody else who’s gone through something similar, and somebody independent to talk to instead of relying on your family.

It can also be really helpful to talk to a therapist or a psychologist about your fears, and sometimes, you want to be strong for your family, strong for your children and all, but you need a safe space with somebody that you can just express your fears and your anger if that’s what’s going on, or your depression or anxiety to while you’re trying to hold a strong face for others in your family. So, I would encourage patients to look at who is the whole team and talk to the other members of the team as well, and sometimes, they can help advocate.

Also, find somebody who might be able to come to your appointments with you, somebody who will help you advocate or remind you – “Didn’t you want to ask this question?” – or be another set of ears that you can process it with afterwards.

Katherine:                  

Dr. Gralow, we’ve covered a lot of useful information today for patients. Thank you so much for joining us.

Dr. Gralow:                 

Thank you, Katherine.

Katherine:                  

And, thank you to all of our partners. To learn more about breast cancer and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell.

The Pro-Active MPN Patient Toolkit: Find Your Voice Resource Guide

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