PEN Blog Archives

Patient Advocacy: How To Increase Twitter Engagement

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While Twitter might not be as popular as other social networks such as Facebook, Instagram, or YouTube, it nevertheless has a large following among healthcare professionals and patient communities. Twitter has the potential to be a powerful tool that keeps you informed, encourages collaboration, amplifies advocacy activity, and raises awareness of your cause.

When Twitter first launched in 2006, gaining traffic from it was easy. Since there wasn’t much competition among users and the concept of tweets was still relatively new, people were curious to click on the links users tweeted.

Today, gaining followers and increasing engagement is harder. But there are ways once you understand how Twitter’s algorithm works. In this article, we’ll cover some tips and techniques you can use to improve your engagement rate and make a bigger impact with your advocacy campaigns on the platform.

How Twitter’s Algorithm Works Today

1.Relevancy

Since 2018, Twitter’s main timeline is no longer chronological. This means an older tweet may appear alongside a tweet from two minutes ago and one from ten minutes ago. Twitter’s algorithm sorts the tweets you see based on your interests, which is why Twitter may sometimes show you a tweet from someone you don’t follow.

What this means for you: Because Twitter shows you content it thinks will be of interest to users, you should check that the people you follow and those who follow you share the same interests.

2. Timeliness

Twitter’s algorithm is heavily weighted by time so timing is one of the most crucial factors that influence how well your Tweet performs and how many people engage with your content.

What this means for you:  You need to post at a time when people are active online for a better chance of visibility. Based on research by social listening platform Sprout Social the best times to post on Twitter are around mid-mornings and mostly on weekdays (Central Time). This will of course vary depending on location. Therefore, it is best to experiment with your timings to discover what works best for you. By tweeting at various times, you can determine when your audience is most active on Twitter and use this information to identify the optimal  times to increase visiblity for your tweets.

3. Credibility

Twitter’s algorithm favors credible accounts. Even if someone doesn’t read a single tweet, they’ll see your bio. They will decide quickly whether or not to follow you when they do.

What this means for you:  In order to make your profile look credible be sure to fill out every detail, such as your profile photo, bio, location, credentials, and so on. Your Twitter profile should be regarded as an important part of your professional advocacy activities. When people encounter your online profile, what will be their first impression of you? What might motivate them to follow you?   Do you need a more professional picture to represent yourself online? Do you have an image for your header? As an example, you could use a picture of yourself holding a sign with a strong message. Maybe you’re working on a campaign or a project right now. In that case, why not include an image that represents this in the header.

How To Increase Your Twitter Engagement

We’ve looked at Twitter’s algorithmic elements, now let’s see how we can take advantage of this information to boost engagement on the platform.

What is Twitter engagement?

Simply put Twitter engagement is when someone engages with the content that you post. It includes:

  • Mentions of your Twitter handle
  • Comments on your Tweets
  • Likes of your tweets
  • Retweets of your tweets
  • Clicks on links you included in your tweets

Furthermore, Twitter followers and activity are positively correlated. A Twitter user who is active will have more followers, increasing the likelihood that they will be engaged.

What is a good engagement rate on Twitter?

Twitter’s average (high) engagement rate is currently 0.33 percent, significantly lower than that of Facebook, which stands at around 1 percent.

Engaging content is something people will see, like and retweet.  Early engagement is especially important. Tweets have a half-life of around 18-24 minutes, meaning that half of the engagement will be received in a little under half an hour. If your tweet doesn’t get much engagement within the first couple of hours, it won’t be shown to more people.

The following pointers will help you get the most out of your tweets, and if you use them consistently, you should see a boost in engagement.

Respond to engagement

The simplest way to get more engagement is to get in the habit of monitoring your notifications tab and responding to each person who @mentions, comments and retweets you. If you’re having trouble getting people to engage with you, be the one to start the discussion. Reciprocity is a big reason why people want to follow and interact with you. To start a conversation, ask a question, reference other accounts in your tweets, repost others’ tweets utilizing the quote tweet tool to add your own thoughts, or create a poll. Polls are a Twitter feature with built-in engagement – and not utilized as much as they could be.

Include a Relevant Hashtag

Hashtags, like Instagram, are an important aspect of Twitter usage. Tweets with hashtags have a 100 percent increase in engagement, according to Twitter’s own findings.

Tip: Visit symplur.com to find relevant hashtags for your disease area. If you can’t find a hashtag related to your topic, you might consider creating your own. For more information on using hashtags strategically read Everything You Ever Wanted To Know About Hashtags in Healthcare…But Were Afraid To Ask!

Take Part In Twitter Chats

Joining a Twitter chat is a fantastic way to meet new people and engage in conversation. People will come to know you if you attend a Twitter chat on a regular basis, and you’ll be able to swiftly create and grow your own network of supporters. Again, you can find a list of disease-specific chats at Symplur. A great place to start is by joining the Empowered Patient Chat  #PatientChat held every other Friday at 10:00 am Pacific / 1:00 pm Eastern.

Add Images To Tweets

You’ve surely heard this before, but it’s worth reiterating: images matter — a lot.  People connect more emotionally with images than text, and in an increasingly crowded digital landscape images can break through the online content clutter. Adding visual appeal to your tweet is a smart way to make your content stand out among a sea of tweets. Not only does adding an image increase the visibility of a tweet, but tweets with images also get more retweets and likes (according to Twitter, a whopping 313% more engagement.)

The type of visual assets you can create include images, videos, infographics, quotes, and GIFs. Take advantage of the fact that you may add up to 4 images to your tweets (all you have to do is click on the photo icon after you’ve added your first image, then add up to 3 more images) and build a carousel of images to draw the reader’s eye.

Tip: Stick to the same colors, typefaces, and layouts in all of your photographs to establish a strong visual identity.

Reshare your best content

Twitter is a fast-paced environment where messages are quickly buried. As mentioned already because a tweet’s shelf life is so brief, you’ll need to publish your best content on Twitter several times to boost visibility. To find your top-performing tweets, use Twitter’s built-in analytics tool (analyticstwitter.com). It’s likely that if this content did well once, it’ll do so again.

Tip: Change things up by adding a powerful graphic, highlighting a crucial statistic, or converting a statement into a question. Experiment with publishing at various times and on various days to see how this affects your engagement rate.

Ask people to share your content

A simple “Please Retweet” can increase the likelihood that people will reshare your content. Yes, it sounds simple, but it works!

As always, thanks for reading. I hope you learned something new today.

How Treatment Side Effects Impact Mental Health and Decision-Making

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Cancer is a long, hard road that no one wants to travel down. When it strikes you, though, being strong is no longer an option, but a necessity. You are probably prepared for the physical impacts of this life changing diagnosis, such as chemotherapy, radiation, and surgery.

What you might not expect, though, are the impacts that your treatment can have on your mental health and decision-making.

Depression and Anxiety

If you are going through chemo, you probably braced yourself for the nausea and fatigue that you knew would accompany your treatment. Once you were in the midst of it, however, you may have found that the mental and emotional impacts of chemo treatments are as great as the physical ones, if not greater.

It’s not difficult to understand why. The treatments themselves are inherently stressful, but what you may find even more distressing is how the treatments disrupt your daily life. These disruptions often occur not only on infusion day, but also on the days leading up to and following treatment.

In other words, you might quickly begin to feel as if your entire life is revolving around your chemotherapy, whether you are preparing for your infusion or recovering from it. You may mourn the loss of your daily routine. Your fatigue may interfere with your ability to work, take care of your home, or simply do the things you enjoy. All this can contribute to feelings of anxiety and depression.

The good news, however, is that there are things you can do to manage your emotions and nurture your mental health, even in this challenging time. This begins, above all, with giving yourself permission to feel what you need to feel, to grieve when you need to grieve, or to be angry when you need to be angry.

At the same time, getting stuck in these dark emotions isn’t good for your physical or mental health. That’s why it’s essential to track how you are feeling and to know when and how to seek help when you need it.

Daily journaling can help you process your emotions, while leaning on your support group can provide the comfort and the perspective you need to move through them.

Expecting the Unexpected

One of the most challenging aspects of the cancer journey from a mental health perspective is how unpredictable it can be. It’s difficult to prepare for a challenge, after all, if you don’t know what’s coming.

For example, vision problems are a common but often unexpected side effect of cancer treatment. Many patients experience dry eyes, eye pain, and blurriness as a result of their treatment. This can further increase emotional distress not only because such visual impacts can compromise your daily functioning but also because vision and mental health, research is increasingly showing, are deeply interconnected. Indeed, the brain’s visual processing centers lie primarily in its deepest structures, many of which are also responsible for emotion and mood.

Treatment and Decision-Making

When you are in the fight of your life, and you are truly feeling all the physical and emotional impacts of that fight, it’s not only your mental health that may be undermined; you may find it difficult to make rational decisions. When you are worried, fatigued, and sick, your brain simply cannot process information as efficiently or well.

You might find yourself, for instance, making rash and unwise decisions, or you may find yourself unable to make any decision at all. This is why it is important to surround yourself both with friends and family and with healthcare providers you trust.

Such a support network can help guide you through choices that you may be unable to make on your own when the treatment side effects have sapped your energy, stolen your focus, and deflated your mood.

Indeed, because your support network is so important when you’re undergoing treatment, you may find yourself needing to make some major decisions even before your treatment journey begins. For example, if you live in an isolated, rural area, you may determine that it is best for your physical and mental health to relocate, at least temporarily, to the city.

Living in the city can ensure that you have consistent and easy access to your entire healthcare team, including mental healthcare providers. Not only can this make treatment easier when you’re feeling especially tired or unwell, but such proximity to your trusted team can enable you to feel more confident and comfortable with your care, mitigating some of the stress you feel and enhancing your ability to make sound decisions.

The Takeaway

The cancer journey is a scary one, but it does not have to lead to despair. The key is learning how the journey, including your treatment, can impact your mental health and your decision-making. Armed with such knowledge, you can take the steps you need to nurture your mental and emotional well-being even as you fight to recover your physical health.

#patientchat Highlights – What Role Does Music Play in Your Mental Health?

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Last week we hosted a “What Role Does Music Play in Your Mental Health?” Empowered #patientchat with Amanda G (@LALupusLady) on Twitter. Take a look at the top tweets and full transcript from the chat.

Top Tweets

Do you think music can be used as a coping mechanism? If so, how?

#patientchat - What Role Does Music Play in Your Mental Health? Highlights

What ways can we incorporate music into patient care?

#patientchat - What Role Does Music Play in Your Mental Health? Highlights #patientchat - What Role Does Music Play in Your Mental Health? Highlights

 

Full Transcript

PEN Wins 2022 Medigy HITMC Blog of the Year Award

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BOTHELL, WASHINGTON — May 11, 2022 – Patient Empowerment Network was named a 2022 Medigy HITMC Award Winner in the Blog of the Year category.

Each year, the Healthcare and IT Marketing Community (HITMC) honors individuals, teams, and organizations for outstanding marketing and PR achievements over the past year. This year a record number of nominations were received by the judging panel.

The award for Blog of the Year is given to the best blog of the past year based on quality of content, frequency of updates and overall presentation.

The Empowered Blog shares near-daily blog posts with practical, educational content for cancer patients and care partners. The blogs help empower patients with knowledge to make more informed treatment  decisions for improved quality of life and optimal health outcomes.

“Patient Empowerment Network is a shining example of what the Medigy HITMC Awards are all about,” said Colin Hung, Community Manager for HITMC. “It shows that what creative and dedicated people can do when they lean into their work and passions. As we navigate these challenging times in healthcare, we need more of this resourcefulness and ingenuity to inspire others.”

“We are thrilled to receive the 2022 Medigy HITMC Blog of the Year Award. Our Empowered Blog aims to educate and empower people with cancer and their loved ones because the best cancer care happens when patients are empowered to ask the right questions, at the right time,” said Kara Rayburn, Digital Communications and Engagement Director of Patient Empowerment Network.

For a full list of Winners and Honorees for the 2022 Medigy HITMC Awards, please visit the official awards page – https://www.hitmc.com/2022-medigy-hitmc-awards/

About Patient Empowerment Network

Patient Empowerment Network (PEN) is a 501(c)(3) non-profit organization. PEN’s mission is to fortify cancer patients and care partners with the knowledge and tools to boost their confidence, put them in control of their healthcare journey, and assist them in receiving the best, most personalized care available to ensure they have the best possible outcome.

PEN’s programs enhance patient health literacy to enable shared decision-making and provide informational and educational resources to empower patients and care partners at every step of their cancer journey. For more information, visit www.powerfulpatients.org

About The HITMC Awards

HITMC is a community – bound together by a passion for and a love of PR, communications and marketing in healthcare and Health IT. The central idea behind HITMC is to bring together all the smart, innovative and hard-working healthcare professionals so that we can learn from each other. We enable this by creating a culture where sharing, mutual respect and lifting each other up is the norm. The annual HITMC Awards are an embodiment of this ethos. They are meant to celebrate the best individuals and organizations who have elevated healthcare marketing, PR and communications in the past year. For more information, visit www.hitmc.com/awards

Rx for Community Wellness and Achieving Equitable Care

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Culturally competent whole person care is critical in work to reduce health inequities. The standard of care for underrepresented communities is not enough, treating the whole patient is crucial, in cooperation with existing care. We at Patient Empowerment Network are dedicated to working toward equitable healthcare for all, and our Rx for Community Wellness program has provided another opportunity. Here’s a look at the program, links to content and highlights from panelists and participants. PEN is grateful to our partners Triage Cancer, Leukemia and Lymphoma Society (LLS), CancerGrace and American Urological Association (AUA) for helping to raise awareness of this program.

Importance of Whole Person Care

Whole person care is the patient-centered optimal use of diverse healthcare resources to deliver the physical, behavioral, emotional, and social services required to improve care coordination, well-being, and health outcomes. Whole person care is critical for improving health outcomes because human wellness depends on coordination of multi-dimensional, multi-systemic care. For people with cancer, social, emotional, economic, and environmental conditions impact their health. 

Rx for Community Wellness focuses on conversations between at-risk populations and key health experts resulting in crowdsourced information that can help empower diverse communities and their providers. This information can also help motivate health leaders to understand issues that exist and to push for solutions to overcome them.

Whole Person Care Resources 

The Rx for Community Wellness program focuses on moving toward culturally competent whole person healthcare. Content for this program was crowdsourced from real-life experiences that provided a way for underrepresented patients and community partners to share their experience with whole patient care, both positive and negative with the healthcare system. In an effort to create models for culturally competent whole person care, the learning resource includes meditation and nutrition tools. These tools were created to help empower patients in optimizing their well-being and supporting them in having the best possible cancer treatment outcomes.

The Rx for Community Wellness programs have covered the following topics:

 Wellness Rx Meditative and Nutritional Tools include the following resources:

A crowdsourced resource is also available:

Rx for Community Wellness Program Highlights 

The Rx for Community Wellness program has generated a wealth of information for patients and healthcare providers alike. The information has informed others about inequitable healthcare experiences while also serving to educate and empower patients with whole person care resources.

Aswita Tan-McGrory shared about how pediatric medicine has provided a roadmap to improve adult whole person care. According to Tan-McGrory, “…they definitely have cornered that market of really thinking of social determinants of health or the whole system for their pediatric patients in a way that I think adult medicine is just catching up on…because you’re working with kids, you can’t not talk to the parents, not think about what is the school like…so you’re forced to because of that environment, but that’s really a model that we should be using for all of our patients.”

 Dr. Broderick Rodell, a naturopathic doctor and wellness expert, shared advice that he’s found helpful in maintaining his own health and wellness. According to Dr. Rodell, “I do spend a large amount of time focusing on training the mind, reducing stress, educating yourself around, what can I do to eat well, nutrition, what can I do to exercise? To get my body moving, what are the various things that I can do to care for myself to the best of my abilities…”

Mexican American patient Sasha Tanori shared about her experience with inequitable healthcare. According to Sasha, “…where I come from, it’s a very like low demographic, we don’t have a whole lot of resources and stuff like that. So getting care is…it’s not the easiest. I’ve had to go to several doctors before I even got diagnosed…I had to be sent to San Diego because they had no idea what was going on. They were like, ‘We don’t know what’s wrong with you. Go home.’ They kept giving me misdiagnosis after misdiagnosis, and especially with being a plus-sized Mexican American, they were just like, ‘Oh, if you lose a couple of pounds, you’ll be fine.’”

Dr. Nicole Rochester shared information about one of the impacts of stress on health. According to Dr. Rochester, “…there’s a study specifically looking at prostate cancer by Dr. Burnham, a researcher, and what they found in this study is that they looked at prostate cancer cells from African American patients and white patients. And when they treated these cells with stress hormones, they saw that the Black patient’s prostate cells would begin to up-regulate the genes and the proteins that are known to make that cancer more resistant to therapy.”

 Dr. Rodell shared his opinion about the U.S. healthcare system and advice for patient advocates, “…if you’re not spending enough time with patients and you’re not communicating with other practitioners that are working with these patients, then you’re not going to have a very good idea of what’s going on in this patient’s life and what could be contributing to their illness. So, therefore, it’s incumbent upon the patient, we as individuals, to try to learn as much as we can and try to get our communities involved to help create educational programs to facilitate that education and that awareness.”

Some program participants provided valuable testimonials about the Rx for Community Wellness programs.

‘I will make more of an effort to get my team members to read information that has been shared on my tests and progress.” – 

“My hematologist is pretty responsive, but I don’t have a holistic doctor, and I’d like to get one. This program definitely raised my awareness of equity issues. Sasha was great explaining her issues. Thank you!”

“THANK YOU for the amazing panel you put together and the moderator (wow!) Perfect representatives from 4 angles/roles = complete and powerful picture/movie.”

How to Take Action for Community Wellness

Valuable advice has emerged from the Rx for Community Wellness program. Anyone with a desire to help can take action to improve care for underrepresented communities. Some recommended actions toward equitable care include:

  • Educate yourself as a patient to work toward better health and wellness. Take advantage of the Rx for Community Wellness resources to help yourself and others who may be struggling with their health.
  • Healthcare providers can read patient experiences to gain an understanding of their points of view and try to do more active listening to make their patients feel heard.
  • Take action to ensure you use wellness practices like exercise, healthy eating, and exercise to decrease stress levels and to maintain a healthy body, mind, and spirit.
  • Use the crowdsourced solutions in the Equity Rx Crowdsourced Resource to learn patient and patient advocate suggestions for more equitable healthcare.
  • If you have an experience to share of when you experienced a health disparity, contact us at question@powerfulpatients.org and let us know what future topics you’d like us to cover.

#patientchat Highlights – How Can You Use Technology for Better Care?

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Last week we hosted a “How Can You Use Technology for Better Care?” Empowered #patientchat on Twitter. Take a look at the top tweets and full transcript from the chat.

Top Tweets

Which digital applications (if any) do you use to help manage your health and why?

Has technology changed healthcare to benefit patients? If yes, how so?

Closing Thoughts

Full Transcript

There’s an App for That…Or There Should Be: Utilizing Technology for Better Health Outcomes

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Health literacy has always been a passion project of mine ever since I was diagnosed with cancer. I stand by the notion that plain language and clear communication leads to better health outcomes. However, communicating with our care team isn’t always easy. How many of us have gone into an appointment only to leave the office 10 minutes later, wondering what happened and what our copay went to? Were all of our issues and questions addressed? 

This is where we have to come in as advocates for our own health, and below are a few ways to do this: 

  • Try and focus on one ailment per appointment 
  • Write down a list of questions you want addressed prior to the appointment 
  • Ask questions during the appointment – you are the expert of your body and health 
  • If something doesn’t make sense, ask for the information to be explained in another way. Patients are found to be more compliant if they know: 
    • How to take their medications properly 
    • Why specific blood tests and imaging are ordered (i.e. if they’re necessary) 

How do we keep track of all of this information, though? There are patient portals that keep track of our appointments and records, but those can often be hard to navigate, and they lack the capability of being able to enter our own information (i.e. about how we’re feeling). Additionally, different health systems have different portals, leading not only to lost passwords, but a missed opportunity for integrated healthcare. This is essentially senseless for cancer patients who have to keep track of multiple appointments and medications, all while trying to keep afloat in a system that wasn’t built for patients and their caregivers. 

However, there’s a role technology can play here. I’ve heard of patients carrying around large binders of their records from appointment to appointment, but if we’re being honest, I don’t believe a physician or other member of a patient’s care team is going to take the time to go through it. Instead, utilizing the power of the device that we’re constantly carrying around and looking at may be the way to go (in addition to a smaller folder or journal for those that are comfortable with paper). 

If we think about it, there’s an app for everything, and having an app to keep track of our cancer journey should be no different. What should this app be able to do? Here are a few things that I think are especially important: 

  • Keep track of: 
    • Medications (dosage, picture of what it looks like, how to take it and what to do if you accidentally miss a dose or take more than what is prescribed, ability to refill) 
    • Blood work (results and what they mean [featuring a scale of what’s low vs. normal vs. high], what to ask your doctor about in terms of next steps) 
    • Imaging (results and what they mean, what to ask your doctor in terms of next steps) 
  • Ability to connect with all members of your care team (primary care doctor, oncologist, nurse navigator even if they work in different health systems) 
  • Ability to connect with caregivers and share information with them 
  • A diary to describe daily thoughts, symptoms, and side effects, flagging specific keywords that can alert a member of your care team 
  • A calendar with appointments (date/time, office location, directions) 
  • Tips to assist with mental health (i.e. offering local or national support groups [both virtual and in-person], counseling that accepts insurance and/or is offered on a sliding scale) 
  • Exercise routines featuring different forms of exercise (yoga, pilates, HIIT, weightlifting, playing a sport, walking and running, etc.) based on you’re feeling side effect- and energy-wise 
  • Information about nutrition through the different phases of a cancer journey (pre-treatment vs. in-treatment vs. post-treatment) that includes recipes 
  • Most importantly, all of this information should be in plain language that’s easy to understand in whatever language the patient is most comfortable reading 

Having an app that features all of these capabilities, I believe, would push the needle forward in patient care, not only creating better health outcomes, but a more satisfied patient. What would you add to the list? 

April 2022 Digital Health Round Up

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This month the advances in technology, from the pages of a science fiction novel, are offering great hope in cancer detection and treatment. A new laser microscope is being used to make cancer cell detection more precise, improving patient outcomes. Robotic technology is being used by doctors to give patients the best chance of surviving one of the deadliest cancers, lung cancer. Scientists have discovered innovative technology using the gene editing tool, CRISPR, to study the genetic makeup of tumors which can provide valuable information about immunotherapy for cancer treatment.

New Laser Scanning Microscope Improves Cancer Cell Detection

Removing a cancerous tumor involves removing all the cancerous cells while causing as little damage as possible to the surrounding tissue. Laser Scanning Oncology Project (LSC-Onco) uses laser scanning microscopes and tumor markers to achieve this. A fluorescent marker applied beforehand allows doctors to see any cancer cells that may be left behind after the incision. Then these cells can be completely removed with great precision reports MedicalXpress.com . Doctors can do this procedure and remove any remaining cancer cells before leaving the operating room. Scientists have developed a fluorescent tumor marker liquid that will make the cancer cells glow under the microscope, making it easier to see and remove the cells. This technology allows for time saving precision during the operation, giving the cancer patients a better recovery and outcome. Find more information here.

Robotic Technology Helping to Discover and Remove Cancer

Lung cancer is the deadliest type of cancer because of its low long term survivability rate. Early detection gives patients diagnosed with this type of cancer the best chance of treatment and a good outcome. Doctors at Baycare St. Anthony’s Hospital in Tampa, Florida use a CT scan in combination with the DaVinci Surgical Robot to help patients with lung cancer. The ion robot has allowed us to reach out further into the lung where we were unable to previously reports abcactionnews.com . By going into the lung further, this allows for a more accurate biopsy and earlier detection. This technology is already showing reliable results for patients and is being expanded for use in another hospital. Find more information here.

New Genomics Technology Could Power Gene Therapy in Oncology

Using CRISP-R, which is a gene editing tool to study and alter DNA, this innovative technology uses protein barcodes to study the genetic makeup of cancerous tumors in a more detailed way. The Pro-Code system is the basis for their spatial functional genomics technology called Perturb-map reports Biospace.com. Perturb-map allows scientist to look at thousands of genes on cancer at the same time. Using this information, scientists can learn how to change the tumors’ environment to allow drugs to turn on T cells to help fight the cancer. They can also use this technology to learn what genes are causing drug resistance. This can be used to help the doctor and patient learn who will respond to what immunotherapies. This technology and the information gained will make an enormous impact on the future of cancer treatment. Find more information here.

Is Inflation Adding to Your Financial Burden?

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The stock market was doing well, until it wasn’t. For those of you who are invested in the market, things have been going splendidly for quite a while. Then comes the virus and job closures, people leaving their jobs for better pay. Home prices went through the roof. Many people made money selling their homes at a premium but then couldn’t find a home to replace it with. Rent is exploding. The cost of food is skyrocketing. You can’t find a decently priced used or new car anywhere. Sure, you can trade that used car you currently drive for a great return, but then spend the equity you made plus more into another car.  

How do you keep right-side up with all of the changes the world is enduring right now? 

Oh Yeah! Now we have a war to contend with and the fallout of it! How about gas prices soaring, way before the usual hikes around spring break and early summer 

Can you get a break? If you’re reading this you probably have already been struggling with the high costs of one of the biggest booms… Healthcare. This economic shift is a hard one. The gears are grinding and the brakes are shrieking.  

What are steps you can take to help mitigate, the best you can in your situation, the financial stress that comes from all of this uncertainty? 

Take a deep breath and I will give you some strategic steps you can take to help alleviate your financial stress and help you make the best of a difficult situation. 

First understand you cannot control what happens economically or politically, but you do need to be aware that there are risks that we can anticipate and be ready for.  

Here are some basic questions that you can ask yourself to help identify problem areas and then where to address these concerns so you can avoid financial toxicity.  

  1. What is your main area of concern?  
  2. Is it your ability to pay for healthcare?  
  3. Are you concerned that you may not have the insurance coverage you need? 
  4. Do you need help meeting your healthcare expenses? 
  5. Are you concerned about having to leave employment early due to illness? 
  6. Are you unsure of how to keep health insurance if you need to stop working? 
  7. Are you swimming in debt and need outside help managing it? 
  8. Do you need information about SSDI, or SSI 
  9. Are you having difficulty working due to your illness? 
  10. Do you need information about ADA and FMLA? 
  11. What resources do you have that you can use strategically to help you manage your overall expenses? 

I know this seems like a lot, but unless you identify your concerns it will be impossible to address your concerns effectively. Take a bit of time to ask these questions, write everything down and prioritize. Pull out your employer benefits booklet and get to know what options you have available to you through your employer. 

Get to know your insurance plan and what they are responsible for and what you are responsible for.  

Know what treatments you are on and their associated costs. Ask your treatment team if anything is expected to change so you can anticipate and prepare financially for the changes. 

If you haven’t done so already, ask your social worker about financial resources that you may be eligible for to help pharmaceutical drug costs as well as financial assistance programs through nonprofits and charitable organizations.  

There is help out there for food, utilities, medical bills, rent, insurance premiums, drug costs, travel for medical care and a host of other state and local resources. Now is a good time to take advantage of the resources. If you have a low income, you can even seek help through Legal Aid Society at no cost to you for legal help.  

Don’t let financial stress keep you from staying on your medical treatment or from keeping your lights on and food in your refrigerator. Ask for help. Seek out resources that can help you and your family.

#patientchat Highlights – Extended Reality: The Use of VR, MR, and AI for Patients

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Last week we hosted a “Extended Reality: The Use of VR, MR, and AI for Patients” Empowered #patientchat on Twitter. Take a look at the top tweets and full transcript from the chat.

Top Tweets

Do you have any reservations of extended reality and/or AI being used in healthcare? If so, what are they?

#patientchat Highlights #patientchat Highlights

How can we increase the overall education around extended reality and artificial intelligence being used in healthcare for patients and their loved ones?

#patientchat Highlights

Full Transcript

Transportation Solutions for People With Cancer Who Can’t Drive

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For people with cancer, transportation can be a major issue. While everyday trips like going to the store or running errands can be difficult enough, transportation becomes a bigger issue when you have to get to your medical appointments and treatment solutions.

Not having access to adequate transportation can hinder your recovery and add stress, making it even more difficult to stay strong and maintain a positive attitude throughout treatment.

Thankfully, even if you don’t have a vehicle or aren’t able to drive yourself, there are resources you can reach out to and options to consider when you need transportation. Your quality of care shouldn’t depend on whether you can drive. Let’s cover a few of those solutions, so you’ll never have to miss an important appointment or experience a lesser quality of life.

Why You Shouldn’t Drive

As many as 30% of people with cancer skip their appointments regularly. One of the biggest reasons why is a lack of transportation. That doesn’t necessarily mean you don’t have access to a vehicle or don’t know how to drive. But, your diagnosis and/or treatment could make it difficult or dangerous to get behind the wheel on your own, and you may be hesitant to ask someone else for help. If you’re going through radiotherapy or chemotherapy, it’s not uncommon to experience symptoms like

  • Fatigue
  • Nausea
  • Vomiting
  • Impaired motor skills
  • Difficulty concentrating

Obviously, it’s not a good idea to get behind the wheel if you’re struggling with any of those problems. Treatment impacts everyone differently, so until you know which side effects impact you the most, it’s a good rule of thumb to have someone else drive you to and from your appointments.

Even certain medications can impair your driving ability, so you might need to rely on someone to help you with everyday errands, too. If you’ve had “near misses”, multiple accidents, or multiple traffic warnings or citations, it’s a good indicator that it’s time to stop driving yourself until you’re off certain medications or until you’re able to build your physical and mental strength.

Reach Out to Resources

One of the best ways to find transportation to your appointments is by utilizing resources specifically designed for people with cancer. The American Cancer Society’s Road to Recovery program is one of the most popular transportation solutions. It offers free transportation to and from appointments, and all you need to do is visit their website and provide information about your location and schedule.

If you’re not able to find a Road to Recovery driver near you, consider reaching out to local church groups or the hospital you use for your treatment. Often, they will have volunteers or special services designed to provide transportation for those in need. While they might not be limited to people with cancer, as long as they are a trusted organization and are willing to work with your schedule, these are great resources to keep in mind.

Finally, reach out to your insurance company. Some companies reimburse people in need for any fares they might have to pay on public transportation, while others have programs that provide rides to their clients if there are no other options.

Utilize Technology

We haven’t officially perfected self-driving vehicles yet, but it’s coming! Learning more about the technological advancements in the auto industry can help you look for better safety features in your next vehicle, including things like

  • Lane assist
  • Blind spot detection
  • Parking assist

Some vehicles will even brake automatically if they sense a potential collision, which can be a huge help if you’re having trouble focusing or you’re tired after a treatment. Using technology to make driving safer and easier for you can build your confidence if you have no other choice but to transport yourself. However, technology isn’t perfect and there are still risks involved. If possible, it’s still safer to have someone else transport you while you’re undergoing treatment.

To that end, you can use ridesharing apps to help you get to your appointments. Uber created a dashboard specific to healthcare organizations that allows them to schedule car rides for patients. UberHealth gives providers the opportunity to coordinate rides for patients who might otherwise not have access to transportation. The Patient Empowerment Network’s digital sherpa® program teaches cancer patients tech skills, including how to use ridesharing apps like Uber and Lyft. Thus, patients using the program always have access to transportation.

If you truly have no other transportation options, you can use technology to your advantage by utilizing telehealth. While some appointments will always need to be in person, including radiotherapy or chemotherapy treatments, you can practice better self-management and improve remote monitoring by connecting with your doctor online. Many physicians have their own digital portals, but even a video call can ensure you and your medical team are on the same page when it comes to your treatment.

Transportation difficulties should never keep you from getting the treatment you need. Keep these solutions in mind to keep yourself safe as you drive to and from appointments, and consider reaching out to family members or friends who might be able to help, too. You’re never going to burden someone with your request, and a lack of transportation shouldn’t be a reason to skip out on the treatments you need to beat the disease.

Three Ways to Partner in Your Waldenström Macroglobulinemia Care

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How can Waldenström macroglobulinemia (WM) patients become partners in their care? In the “Waldenström Macroglobulinemia Treatment Decisions: What’s Right for You?” program, expert Dr. Jorge Castillo from Dana-Farber Cancer Institute shares three key ways that WM patients can take a more active role for optimal health outcomes.

1. Ask Your Doctor When the Appropriate Time to Treat Is

WM patients can often remain in the watch-and-wait phase of their disease for many years, but it’s important for the oncologist to monitor the patient during this time. Ask your doctor when the appropriate time to treat will be, make sure that your bloodwork is monitored on a regular basis, and report how you’re feeling and all of your symptoms.

 2. Establish Your Treatment Goals and Plan

Depending on each Waldenström macroglobulinemia patient, treatment goals may vary depending on the patient age, overall health, lifestyle, and other factors. Work together with your healthcare team to determine your treatment goals and then learn about treatment options. Take action to both ask your WM provider about treatment options and ask about credible Waldenström macroglobulinemia online resources to do further research. And then discuss your treatment options with your WM provider to determine the best treatment for you.

3. Become a Proactive Patient

WM patients can take actions to further advocate for their best care. Educate yourself about your condition by reading credible online resources like International Waldenstrom’s Macroglobulinemia Foundation, Lymphoma Research Foundation, and The Leukemia & Lymphoma Society. Bring a friend or family member to your appointments with your Waldenström macroglobulinemia doctor to help take notes or to ask questions – and make sure to advocate for yourself if you feel ignored or unheard.

By taking a more active role in their care, Waldenström macroglobulinemia patients can help determine the best treatment plan for optimal health outcomes.

#patientchat Highlights – Improving Equity in Clinical Trials

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Last week we hosted a “Improving Equity in Clinical Trials” Empowered #patientchat on Twitter with special guest Diverse Health Hub.  Take a look at the top tweets and full transcript from the chat.

Top Tweets

What are ways researchers can improve their overall engagement to reach more diverse communities?

#patientchat top tweet

How can we continue to increase public awareness of clinical trials?

#patientchat top tweet

Share Your Story

#patientchat top tweet

Full Transcript

Introducing Art Flatau, AML Empowerment Lead

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I have decided to try my hand at writing a regular blog.  I hope to write a post every month or so. This first post is something of an introduction.  You can read more of my background on my PEN Empowerment Lead page. I suppose I should mention that I am not a medical doctor and am not giving medical advice. I have in the past written a very occasional blog, largely summarizing conferences or meetings I have attended (Art Flatau’s Blog on Leukemia). My plan is to mostly write about new advances in AML treatment and stem cell transplants (including other cellular therapy like CAR T-cell).  However, I also want to write some about my own experience, particularly dealing with late effects. 

I am an AML and bone marrow transplant survivor. My interests are in new advances in AML treatment including stem cell transplants. As a long-term survivor (the 29th anniversary of my transplant was last month, February 2022) I am also interested in late effects. I have a few ideas currently on subjects I would like to explore further, including: 

Let me know if you have topics that you are interested in. I cannot promise to write about them there are lots of interesting topics in this area that I know little about. 

#patientchat Highlights – How is “Value” Defined in Healthcare?

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Last week we hosted a “How is “Value” Defined in Healthcare?” Empowered #patientchat on Twitter.  Take a look at the top tweets and full transcript from the chat.

Top Tweets

How do you assess “value” in your care?

#patientchat top tweet

How does measuring value vary from all involved in healthcare such as patients, caregivers, physicians,  health systems, etc.?#patientchat top tweet

As the definition of value continues to evolve in healthcare, what steps can you take to ensure your voice is heard? Do you have advice for other patients who are struggling to have their voices heard?

#patientchat Top Tweet

Full Transcript