PEN Blog Archives

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

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

Benefits program participants have learned include how to:

1. Use Patient Portals

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

2. Perform Google Searches

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

3. Utilize Social Media

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

4. Benefit From Telemedicine

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

5. Improve Health Travel

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

6. Engage With Patient Communities

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

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

How Medical Financial Hardship Can Affect Your Health

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How Does Your Finances Affect Your Health?

In 2002, my husband was diagnosed with MGUS, a precursor to Multiple Myeloma. As many of you have also experienced, your life changes. At diagnosis, you probably felt you couldn’t breathe or process. All you could think of for days was cancer, cancer. And if you have been unfortunate enough to witness someone else in your family or close circle of friends with cancer you could only relate to their experience or what you thought their experience was. Good or bad..

I’ve witnessed too many people in my family battle cancer. My brother with leukemia, my father with lung cancer, my great grandfather with prostate cancer and my husband with multiple myeloma. I watched my parents struggle with the cost of his care. My mother was the caregiver to my father and stopped working to care for him. That was difficult for her because her sustainable income became almost non-existent. Fortunately, it came at a time when all but one of my seven siblings were independent and on our own. This at least was less responsibility for my mom and dad to worry about. However, because he was in the hospital a lot, and she no longer had income coming in, we all covered her daily expenses, food, mortgage, gas, water, purchased her a more reliable car, home repairs etc. We became her failsafe. Many people are not so fortunate.

My mother never spoke of the emotional or financial stress of everything to any of us, but we knew it had to be difficult. We saw the strain on her health. Her weight changed. She had trouble sleeping. Her blood pressure soared and her arthritis was always troubling her. More so than usual. My siblings who lived near would spend time helping her care for dad, and within a week of his death she had to take care of her mother who was an amputee and had Alzheimer’s.

So, it’s really not at all surprising to learn that medical financial toxicity or stress could be linked to worst cancer survival. The effects are many. Unfortunately for those who live in rural areas, have low incomes, those who are minorities, the underinsured or uninsured you already have financial stress. An expensive illness like cancer makes it all the more difficult.

My husband had great insurance from his employer. I thought at first we wouldn’t have to worry about medical bills. That is until he was at first approved for coverage for a stem cell harvesting and transplant in another hospital out of network, because there wasn’t a specialist in KY. Right after the transplant we were told treatment wasn’t going to be covered by his insurance.. After 5 weeks in the hospital!!! He became very despondent and depressed could not eat or sleep. He began to suffer with other emotional and physical issues unrelated to the illness itself. Additionally healing from the transplant was difficult. Lesson learned, having good insurance does not shield you from financial stress.

An analysis of 25,000 cancer survivors showed that financial hardship had a significant association with premature death among cancer survivors, no matter their insurance coverage. And according to K. Robin Yabroff, PhD, MBA, of the American Cancer Society in Kennesaw, GA and colleagues, almost 30% of patients ages 18-64 reported financial toxicity, which is associated with a 17% excess mortality risk compared with same-aged patients who did not report medical hardship.

In older patients, they found that financial hardship was less common with a 14% excess mortality risk. Having insurance did reduce the risk but not by much and certainly didn’t eliminate it.

An earlier study in the Journal of the National Cancer Institute found an increased mortality risk in cancer survivors who filed for bankruptcy. Though the number filing was low, medical financial hardship covers a range of economic stressors.

Some of the financial hardships associated with financial stress included; patients not adhering to or even forgoing treatment. Having problems paying for expensive prescriptions could lead to not taking medicine as prescribed to make it last longer or not getting it filled at all, In addition mental health counseling and other health issues are neglected.

How to mitigate a lot of the financial stressors that can lead to higher mortality?

Understand your illness and all aspects of your treatment. Ask your doctor to refer you to someone in the facility who can help you find financial assistance to help you manage the costs of your care and help you manage your everyday expenses. A quick google search can help you locate local, state and federal resources that may be available to you. Seek out help from organizations such as American Cancer Society, Leukemia and Lymphoma Society. There are many others. Get help with finances and budgeting CoPatient is a great organization that can determine of medical bills over $500 are accurate and fight that battle for you. Triage Cancer is a great resource to help you understand legal, and insurance information based on your state of residence.

The main takeaway is, you need to focus on healing and staying healthy. Seek out help regarding your finances so that you won’t find yourself in a financial crisis. Support groups are great sources of information.

Don’t be afraid to ask. Your health depends on it!

May 2022 Notable News

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This month brings exciting and new information to help with the fight on cancer. As technology improves, knowledge gathered about cancer changes how the medical community views and approaches cancer treatment. Early screening is the key to dramatically reduce colon and rectal cancers in women. There is also a rise in esophageal cancers in middle aged adults, early screening plays a key role in patient outcome.

New Evidence Shows Cancer is not as Heritable as Once Thought

Scientists have found that cause of cancer is not primarily genetic as once thought. There are three causes of cancer: genetic (genome), environmental (exposome), and metabolic (metabolome). As cancer develops and spreads in the body, it creates its own environment and introduces certain metabolites. It becomes a self-fueled disease, reports MedicalXpress.com . Looking at how the cancer grows and survives in the body offers another more specific avenue of treatment for physicians to offer their patients. Simple changes to a patient’s metabolism and lifestyle can change the internal environment and prevent the cancer from growing. Scientists looking at all three causes of cancer opens more options for cancer prevention and treatment. Find more information here.

Starting Colon, Rectal Cancer Screening Earlier Reduces Risk in Women, Study Finds

Starting colon and rectal cancer screening at ages 45 to 49 has resulted in about a 50% reduction in cases of the disease diagnosed in women ages 45 to 60, compared with starting screening at ages 50 to 54 reports, UPINews.com.  Colon and rectal cancers are the third deadliest cancers and there has been rising rates among younger people. In response to the rising rates of occurrence, earlier screening has been encouraged by physicians. The standard procedure for screening is a colonoscopy. During the colonoscopy, the doctor can identify and remove cancerous tumors at an earlier stage and remove polyps that could become cancerous. Find more information here.

Alarming Rise Found in Esophageal Cancer and Barrett’s Esophagus in Middle-Aged Adults

Adults ages 45 to 64 experienced a nearly doubled rate of esophageal cancer and a 50 percent increase in the precancerous condition Barrett’s esophagus between 2012 and 2019 reports MedicalXpress.com . This information has prompted doctors and scientists to look at the causes of this rise, is it due to an increase in screening or is it an actual rise in cancer. Doctors use endoscopy to guide a small camera down the patient’s esophagus, stomach, and duodenum. Esophageal cancer is usually detected in later stages due to minimal symptoms in the early stages. People with elevated risk factors such as chronic acid reflux, male gender, smoking, alcohol consumption, obesity, and Barrett’s esophagus need to get earlier screening. Early screening is the best tool in prevention, often the endoscopy can be done at the same time as the colonoscopy. Find more information here.

May 2022 Digital Health Round Up

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This month brings great strides in the advancement of technology available to physicians treating cancer patients. Scientists are using artificial intelligence to help physicians predict cancer reoccurrence for patients, helping patients have better outcomes. New imaging technology, using fluorescent probes, aids in tracking the patient’s cancer drug progress. Researchers have also developed a procedure using photodynamic therapy to help in the fight on colorectal cancer.

AI Tool Accurately Predicts Tumor Regrowth in Cancer Patients

Doctors and scientists have developed an artificial intelligence tool that can accurately predict how likely tumors are to grow back in cancer patients after they have undergone treatment reports, TheGuardian.com. Using this AI for the patients that are at highest risk of having the cancer reoccur helps with getting detection sooner and increases the patients’ chance of a better outcome. Cancer patients carry the burden of worrying about reoccurrence daily, and this AI can help decrease some of that anxiety. Accurate prediction of recurrence can decrease the amount of CT scans for patients, decreasing the amount of radiation that the patients are exposed to. This study tested the AI on lung cancer, but this artificial intelligence tool can be used for many other cancers throughout the body. Find more information here.

Fluorescent Probe Can Track Cancer Drug Progress, Study Shows

Researchers say the fluorescent probe can track how tumors are responding to the drugs, which harness the body’s immune system to fight disease. The light-sensitive technology is able to detect which key immune cells-a small group known as T cells- are involved in attacking tumors reports, MedicalXpress.com . This new imaging technology can show doctors how the patient’s body is responding to the treatment right away. The doctors can see the response through tissue or blood samples and make changes to treatment based on the findings. This imaging allows for a more personal approach to each cancer patient, improving patient outcomes. Find more information here.

Wireless Device to Provide New Options for Colorectal Cancer Treatment

Photodynamic therapy is a new tool available in the fight on colorectal cancer, the third most common cancer. The researchers will use photodynamic therapy (PDT) during surgery by using a photosensitizer- a drug activated by light- to kill the cancer cells. During this process, surgeons will be able to remove the bulk of the tumor, then fully irradiate the tumor bed when the photosensitizer is activated by the light reports, MedicalXpress.com . The primary treatment for colorectal cancer is surgery and chemotherapy, this allows for another option for treatment of this cancer. Using the photodynamic therapy helps the surgeon get out all the cancerous cells, helping to prevent reoccurrence of the cancer. This method of treatment also helps decrease the toxic side effects that chemotherapy has on the body. Photodynamic therapy can be used for treatment of other cancerous tumors throughout the body. Find more information here.

Low Testosterone in Cancer or Transplant Survivors

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I was one of the authors (out of more than 50) of a review article on male specific late effects in stem cell transplant patients [1]. The article looked at many late effects in male transplant survivor. This post is a summary on one late effect, hypogonadism (that is low testosterone) as well as my opinion about the recommendations on screening for low testosterone.

We do not know much about low testosterone in cancer survivors or transplant survivors. There is a significant increase in the incidence of low testosterone but the size of the increase in transplant survivors is not well understood. Symptoms related to low testosterone include: “loss of body hair, small testes, and ED (Erectile Dysfunction)”. Other symptoms that may be signs of low testosterone but may be signs of other problems include: “loss of libido, anemia, fatigue, lack of motivation, reduced muscle mass, and increased fat mass” (I don’t really know what “lack of motivation” means). The article recommends: “testing and consideration of hormone replacement therapy based on symptoms”. This is similar to what has been recommended in the past [2].

In 2016, some 23 years after my bone marrow transplant (BMT) I was diagnosed with low testosterone. I had finally asked one of my doctors to get tested and my testosterone level was 192 (my free testosterone was also low, and this is useful for the doctors, but I won’t mention it anymore). The normal level of testosterone is between 300 and 1000 nanograms per deciliter (ng/dL). [3] While I had symptoms, low libido, loss of muscle mass and fatigue primarily, no doctor had asked about those symptoms, and I had not thought about them as more than getting old.

I started on testosterone replacement, and it has made a huge difference. The biggest difference in my mind is less fatigue. One of the more common side effects of testosterone replacement is it can raise your red blood count (I like to call this an “effect”). Since a year or two after my transplant, my hemoglobin was on the low side (typically 12-13, normal for men is 13.2-16.6) and my hematocrit was generally between 37 and 40% (normal for men is 38.3-48.6%) [4]. A few years ago, at my annual exam my hematocrit was close to 35%. I went to see an oncologist (the oncologist who treated me is no longer seeing patients in the office). A whole bunch of tests were run, but not a testosterone test and nothing abnormal other than my red blood values was found. After starting testosterone replacement, my hematocrit is 43-45% and my hemoglobin is 14-15. The biggest change for me is that I have far less fatigue presumably because I have more red blood cells.

Testosterone levels naturally decrease with age. The folklore is that the testosterone level decreases about 1% per year from age 30 or so. [5] Other sources say from age 20. I believe this means that if you level is 800 at age 30 (there seems to be little data for a “normal” level at different ages), it will go down about 8 units per year (1% of 800). So, at age 80, the level would be around 400 (if this actually means a decrease of 1% of the current level every year, it will go down to about 480 at age 80). If the level was 600 at age 30, then it would be about 300 at age 80 (or around the low end of the normal range, which I imagine is about the average level for 80-year-old men). What if a 30-year-old had a testosterone level of 800 and then was diagnosed with AML and had chemotherapy and a transplant? Perhaps 2 years post-transplant is now 500, which is normal. There seems to be no data on testosterone levels in long term transplant survivors. However, if this goes down 8 units a year (this seems to be as good a guess as any), then after 25 years the level would be 320 and after 30 years it would 280, which is less than the 80-year-old man without cancer. It is important to state that there appears is no data to support or refute this scenario. Still my belief is that this is essentially what happened to me. My guess is that quite a few male transplant survivors have a testosterone level in the normal range 1 or 2 years post-transplant (although most will not have it tested) but will eventually have hypogonadism and likely not realize it.

While there is a lot we do not know about testosterone levels in transplant survivors (or for that matter healthy men), there is one thing we do know. “The majority of health care professionals do not address [sexual dysfunction]” [1]. In my mind this calls into question the recommendation to test testosterone levels “based on symptoms”. Most doctors do not seem to ask about symptoms specific to low testosterone and the other symptoms are non-specific. It seems to me that not testing testosterone levels at say 1 or 2 years post-transplant is likely causing harm to some male long term survivors. A better guideline would be to routinely test 1 or 2 years post-transplant and then again if symptoms warrant.

The BMT Infonet as part of their Celebrating a Second Chance at Life Symposium had a really good workshop on Sexual Concerns in Men after Transplantation by John Mulhall MD, from Memorial Sloan Kettering Cancer Center. You will have to register before viewing the replay of this workshop. While it covered other topics, there was a lot of information about low testosterone 

Contact Art Flatau, flataua@acm.org

Bibliography

[1] Phelan, R et. al., “Male-Specific Late Effects in Adult Hematopoietic Cell Transplantation Recipients: A Systematic Review from the Late Effects and Quality of Life Working Committee of the Center for International Blood and Marrow Transplant Research and Transplant Complica,” Transplantation and Cellular Therapy, 2021.

[2] Navneet, Majhail S.; et. al., “Recommended Screening and Preventive Practices for Long-Term Survivors after Hematopoietic Cell Transplantation,” Biology of Blood and Marrow Transplantation, vol. 18, no. 3, pp. 348 – 371, 2012.

[3] Icahn School of Medicine at Mount Sinai, “Testosterone,” [Online]. Available: https://www.mountsinai.org/health-library/tests/testosterone

[4] Mayo Clinic, “Complete Blood Count,” [Online]. Available: https://www.mayoclinic.org/tests-procedures/complete-blood-count/about/pac-20384919

[5] Mayo Clinic, “Testosterone therapy: Potential benefits and risks as you age,” [Online]. Available: https://www.mayoclinic.org/healthy-lifestyle/sexual-health/in-depth/testosterone-therapy/art-20045728

[6] WebMd, “Is Testosterone Replacement Therapy Right for You?,” [Online]. Available: https://www.webmd.com/men/guide/testosterone-replacement-therapy-is-it-right-for-you

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 underserved 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 underserved 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 underserved 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

April 2022 Notable News

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April brings positive news in the field of oncology. Advances in methods of chemotherapy delivery offers a new hope in the treatment of cancer. Scientists have also developed new materials to assist the body in fighting cancer. With all the amazing and lifesaving new treatments discovered with each new day, there is still much damage to be repaired in screening and diagnosis of cancer caused by the pandemic.

New Highly Effective Treatment for Liver Cancer

A new treatment for liver cancer which isolates the organ and “bathes” it in chemotherapy has been found to be effective in almost 90%of patients, reports newschain.com . This treatment uses two small balloons to make the blood supply to the liver flow around it instead of to it, for one hour. During the hour, the chemotherapy is delivered to the liver. This method allows for higher chemotherapy doses to be used because it does not go directly into the bloodstream, therefore not causing damage to other parts of the body. After the chemotherapy is delivered, the blood supply to the liver is drained and filtered. Typically, there is a poor outcome when liver cancer is diagnosed, due to how the treatment damages other parts of the body. This new treatment helps lessen that damage, therefore allowing a better outcome. Patients have a quicker recovery from this treatment and a better quality of life during the chemotherapy treatment. There is hope that this technique may be used to treat other types of cancer as well. Find more information here.

Simple Delivery Method Enhances Promising Cancer Treatment

One cutting-edge cancer treatment exciting researchers today involves collecting and reprogramming a patient’s T cells-a special set of immune cells-then putting them back into the body ready to detect and destroy cancerous cell reports MedicalXpress.com. These cells are called chimeric antigen receptor T cells or CAR-T cells. Engineers at Stanford University have developed a hydrogel to deliver these immune cells next to a tumor in the body to make the cells more effective. This gel is made of water, and a polymer from cellulose and biodegradable nanoparticles. This hydrogel makes the CAR-T cells effective in treating solid tumors, instead of only treating blood cancers. The cells are not going into the bloodstream but right next to the tumor, allowing for the tumor to have a longer exposure to the immune cells. Find more information here.

Doctor’s Warn of Cancer Survival Rates Going into Reverse

Many lives will end “prematurely” due to a combination of a reluctance of some people to come forward and seek help for symptoms and delayed treatments during the Covid-19 pandemic reports www.ShropshireStar . If cancer is diagnosed in later stages, it is harder to treat and the patients’ survivability decreases. During and since the pandemic, cancer surgeries have been backlogged or cancelled. There are significant staffing shortages which affect patient access to care, diagnosis, and treatment. There are shortages in oncologists, pathologists, radiologists, and nurses to care for the cancer patients. In England, they are asking for government interference for solutions to these issues, there are dramatically fewer people getting screened for cancer since the pandemic. This decrease in screening will have a serious consequence to patient survivability. Find more information here.

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.