Tag Archive for: cancer patients

Patient Advocacy: How To Boost Your Visibility on LinkedIn

In my previous post, I shared with you tips to optimize your LinkedIn profile.  Recall that I recommended LinkedIn as the best social network for enhancing your professional online presence and showcasing your advocacy activities.

If you have put into practice the tips from last month, you should now have a professional-looking profile. So let’s discuss ways you can make your profile more visible on the site.

In essence, you must appear more frequently on LinkedIn, share engaging content, and engage consistently to increase your visibility.

The following are my top recommendations for increasing your activity and visibility on the platform through a daily engagement routine.

1. Share a Daily Status Update

Keep active and visible by posting a status update daily and engaging with your connections’ posts and articles in your newsfeed. LinkedIn encourages users to use specific hashtags in their posts and searches. It’s important to find hashtags relevant to your followers’ interests before you start adding them to your LinkedIn posts. It’s a good idea to observe what hashtags others in your advocacy area use on LinkedIn, as well as on other social media platforms such as Twitter and Instagram.

2. Share A Video

With LinkedIn native video, you can record a video inside the app or upload a pre-made video from your camera roll. This feature is available only on mobile, so download or update the app to make sure you have the latest version.

Tip: Go Live. In the short-term, native video on LinkedIn is still a novelty and presents an opportunity for you to stand out. With live video, you can broadcast content directly to your profile, so you can interact with your audience in real-time, drive deeper engagement, and establish your thought leadership. You will need to switch on Creator mode to be able to record live video. Here’s how to do this

3. Mention People in Your Posts

Mentioning a connection encourages engagement with your posts and comments. To mention someone in a post: Type “@” and then begin typing a name in the box.

4. Engage With Comments

Pay attention to everyone who takes the time to leave a comment on something that you post. Each time someone likes or comments on your post, their network can see it, thereby increasing the visibility of your post. When people are liking, sharing, and commenting on your posts, this acts as “social proof” to your network and beyond.

5. Nurture Relationships

Nurture your LinkedIn relationships through regular engagement. LinkedIn will notify you of trigger events (such as when one of your connections starts a new job). Take a moment to reach out to them with a personalized message of support.

6. Participate In LinkedIn Groups

Join groups on LinkedIn and start a conversation or comment on what is posted there. You will find groups by clicking on Interests > Groups from your profile or searching keywords to identify groups with interests similar to yours.

7. What You Share Matters

What you post on LinkedIn will establish you as a credible authority in your field. The key is to share relevant news, articles, and insights with your connections. Consider the type of content that will be most useful to your followers. As a thought leader, your goal is to consistently share your unique perspective on the most important industry topics.

8. Post Content At Optimal Times

Finally, be strategic about when you post. As a general rule, LinkedIn users are most active right before and after work (7-8 am and 5-6 pm), as well as during lunchtime. Experiment for yourself. Post at different times and take note of which times your particular audience is most engaged with you.

Internet Access, Digital Literacy, and Bridging the Digital Divide

In the modern healthcare era along with navigating COVID-19 infection concerns, Internet service and digital literacy are more important than ever for cancer patients and their loved ones. Telemedicine serves cancer patients with multiple benefits, some of which include protecting them from infection and virus risks, providing easy ways to refill prescriptions, schedule appointments, and view test results; and reducing time, costs, and stress of traveling to and from appointments. 

Internet Access, Digital Literacy, and the Digital Divide

Yet cancer patient advocates must look closely at Internet access, digital literacy, and the digital divide to support more underserved patients. A recent National Cancer Institute study of cancer patients and caregivers showed that 90 percent had Internet access, and 82 percent owned a smartphone. While these statistics look promising, there is still more work to be done to help underserved patients. Examining results from a recent study of rural cancer survivors reveals a digital divide. Medicare-covered cancer survivors in rural areas had telehealth availability 53 percent of the time compared to 63 percent in urban areas. Rural cancer survivors are also less likely to own desktop computers, laptops, smartphones, or tablets at a rate of 67 percent versus urban cancer survivors at 82 percent. Internet access also needs improvement with Medicare-covered rural cancer survivors at 58 percent access versus 79 percent in urban areas. 

Furthermore, Black and Hispanic survivors had lower technology ownership, with 65 percent of Black survivors and 67 percent of Hispanic survivors owning a desktop computer, laptop, smartphone, or tablet versus 82 percent of white survivors. “Despite the potential of telehealth to meet the unique healthcare needs of cancer survivors (e.g., surveillance, comorbidities, primary and survivorship care), some patient groups face greater barriers to technology access,” the study authors wrote. “These patterned differences in use and access underscore a need to engage multilevel interventions to mitigate the underlying barriers to telehealth use.” 

U.S. Financial Support of Digital Healthcare Access

What can vulnerable cancer patients do to improve their situation if they’re lacking in Internet service or technology literacy? Fortunately, President Biden has put racial equity at center stage of his agenda and is working to end disparities in healthcare access and education. The  Coronavirus Aid, Relief, and Economic Security (CARES) Act helped provide telehealth and connected care services to patients, and the proposed infrastructure bill could help extend support. The U.S. federal government has taken action to help those in need of Internet service or improved Internet service. As part of the Bipartisan Infrastructure Law, President Biden and Vice President Harris operated with Democrats, Republicans, and Independents to create the Affordable Connectivity Program (ACP), as part of the Bipartisan Infrastructure Law. The ACP provides eligible households with a high-speed Internet plan for no more than $30 per month. The Biden-Harris Administration has received commitments from some leading internet providers to offer ACP-eligible families who pair their ACP benefit with one of these plans to receive high-speed Internet at no cost. You can easily check to see if you qualify here.

Digital Literacy Training

For those looking to improve their digital literacy, Patient Empowerment Network can help people build their skills. The PEN digital sherpa™ Program and Digitally Empowered™ Course help cancer patients (mainly 65 and older) and their families become better prepared for their cancer journey. The goal is for participants to learn to use technology to their advantage and to become more tech-savvy. The program’s workshops help educate patients and care partners in basic Internet and social media skills to help them in their search for information about their illness and support resources for themselves and their families.

University students, known collectively as “sherpas,” have been specially trained by the Patient Empowerment Network to offer technology skills and are paired with program participants. The sherpas empower patients and care partners by training them in skills such as: 

  • Safely navigating online healthcare resources
  • Finding credible online resources
  • Forming online disease support communities
  • Using telemedicine
  • Navigating your health with social media
  • Using rideshare and wellness apps
  • Following and connecting with experts online

The Digitally Empowered Course opens access to a whole new world of knowledge and tools to assist you in researching your condition, asking informed questions, and taking an active role in shared decision-making with your care team. The 10-module Digitally Empowered course trains participants in:

  • How to access the Internet
  • Identifying credible resources and websites
  • The benefits of your patient portal
  • Using social media to connect and learn
  • Navigating your health with mobile devices
  • Apps to use for convenience and fun
  • How to use telemedicine
  • Accessing and joining online support communities

The pandemic brought some issues to light about gaps in Internet service and digital literacy. But vulnerable and underserved cancer patients and their loved ones no longer need to remain in that state. They now have options to move them toward becoming empowered and informed. 

Empowered and tech-savvy patients have the ability to build more support for themselves and to build knowledge and confidence. With increased confidence, patients feel more at ease to ask questions when they interact with their healthcare team members. This fortified knowledge and confidence then empowers them to make more informed decisions for optimal health outcomes and improved quality of life for patients. These results make a clear win-win for formerly underserved cancer patients and for those who work to support these patients.


Sources

https://mhealthintelligence.com/news/rural-cancer-survivors-report-low-telehealth-availability-internet-access

https://pubmed.ncbi.nlm.nih.gov/34428075/

https://www.whitehouse.gov/getinternet/?utm_source=getinternet.gov

How Medical Financial Hardship Can Affect Your Health

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!

Five Ways the PEN Empowerment Lead Program Can Support Your Cancer Journey

Our Empowerment Lead program is here to support patients and families around important topics and to provide navigation for the path to empowerment. Our Empowerment Leads are highly passionate empowerment ambassadors volunteering from around the U.S., engaging with the PEN network of cancer patients and care partners, and serving as a direct channel of empowerment.  

1. Utilize the PEN Text-Line

By texting EMPOWER to +1-833-213-6657, you can meet someone with your same condition  and  receive personalized support from our Empowerment Leads. Whether you’re a cancer patient, or a  friend or loved one of a cancer patient, PEN’s Empowerment Leads will be here for you at every step of your journey.

2. Watch PEN Videos

Taking a proactive role in your well-being as a patient is of utmost importance for optimal health outcomes. And PEN videos are a trusted source when seeking out information from cancer experts, patients, care partners, and PEN Empowerment Leads. Whether you’re a newly diagnosed patient, care partner, long-time cancer patient, or other concerned patient advocate, PEN videos provide a valuable way to learn about cancer patient stories, testing information, questions to ask your cancer specialist, how to support and be supported as a care partner, ensuring that your patient voice is heard, and more.

3. Read PEN Blogs

Our PEN blogs are a rich source of support information on a wide range of topics for cancer patients and care partners. The blogs serve as another way to gain knowledge and advice for navigating and coping with your cancer journey. Some recent topics have included mental  health advice, financial support resources, nutrition and exercise tips, COVID-19 vaccine guidelines, patient stories, caregiver advice, genetic testing, and cancer news updates.

4. Download and Use Our Activity Guides

Initiated as a patient and care partner tool at the beginning of the COVID-19 pandemic, our PEN-Powered Activity Guides continue as a way to stay connected and to relieve stress during your cancer journey. Packed with information and support resources, the Activity Guides provide content including clinical trial information and experiences, patient stories and lessons learned, advice from care partners, healthy recipes, music playlists, coloring pages, and more. If you’re a busy cancer patient or care partner, the Activity Guides are easy to print to take with  you to read during travel and waiting room time for cancer care appointments.

5. Learn About Our PEN Empowerment Leads

If you don’t have time to watch a video or to read a blog right away, you can browse our list of PEN Empowerment Leads. You can easily see the community that each Empowerment Lead serves  and read a short bio about their experience as a cancer patient or care partner.

By taking advantage of our PEN Empowerment Lead resources, cancer patients and care partners can gain knowledge and confidence to navigate their own cancer journeys.

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

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? 

Transportation Solutions for People With Cancer Who Can’t Drive

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.

March 2022 Notable News

With all the research done in the field of oncology, we are still learning about the negative impact the pandemic has had on cancer patients. Covid has taken a toll on everyone, but it has hit cancer patients especially hard. March also brings some positive news, an exciting discovery that could lead to important advances in pancreatic cancer treatments. Finally, man’s best friend is also contributing to cancer prevention and cancer screening.

Covid’s Effects on Cancer Care

Cancer patients are more prone to severe coronavirus disease, some do not respond as well to COVID-19 vaccines, and they face delays in diagnosis and treatment due to the pandemic reports CancerHealth.com . During the pandemic and quarantine, people missed screening opportunities, and this is causing an increase in later stage cancer diagnosis. Patients with lung cancers and blood cancers are at a higher risk of having a more severe case of Covid and do not respond well to the vaccine. Cancer patients also face delays in needed treatments during the pandemic. Another negative impact of Covid is the toll it takes on a patient’s mental health due to isolation and financial stress. Racial minorities and people with lower incomes have been hit the hardest during the pandemic. Finally, cancer research has been negatively affected due to labs closing and clinical trials getting delayed. As a nation, we need to look at the toll Covid has taken on the field of oncology and make changes to lessen the impact of a pandemic in the future. Find more information here.

Molecule Discovered that Can Kill Pancreatic Cancer

A research team led by scientists at Roswell Park Comprehensive Cancer Center has discovered a molecule that inhibits the growth and metastasis of pancreatic cancer cells through the iron metabolism pathway reports MedicalXpress.com . This molecule works on iron metabolism to kill the cancer cells and proteins that cause cancer growth. A door has now opened for development of a new pancreatic cancer treatment. Pancreatic ductal adenocarcinoma (PDAC) cells have mutations that make it difficult to treat with chemotherapy. This molecule causes ferroptosis, cell death triggered by iron, in PDAC which can lead to new and effective treatments. Find more information here.

Dogs Help Sniff Out Cancer

Cancer cells give off a specific odor—traces of which can be detected by dogs through human urine, breath, skin, sweat, and feces, reports HealthDigest.com . Dogs can smell this odor before the cancer spreads, allowing for early detection. Currently, there is an eight month long intensive training for detection dogs. The canine scent detection will be used as a screening tool. Research is being done as to what biologic compounds the dogs smell and then screening tests can be created based on those compounds. Find more information here.

Finding Value in Your Care: Take Action Checklist

1. Am I getting the best care or even offered the best?  

  • Is the care appropriate for my age? My condition?
  • Am I being given more than one option, if at all possible, with the pros and cons explained to me?
  • Is my provider willing to recommend me to a colleague for a second opinion if I feel that I need one?
  • Does my healthcare provider care for me as an individual or do I feel lumped together with other patients?
    • Do I feel comfortable asking questions? 

2. Are the ordered scans and blood work helping me in my care or are they ordered “just because?”

  • Does my provider explain the reasoning behind these orders (i.e. what information we’re looking for, how this will help progression of my care, etc.)?
  • When the results come back:
    • Do I have access to them? If so, are they easy to find?
    • Are they explained to me in a way that makes sense?

3. Is insurance providing me coverage or am I consistently receiving denials/is my provider having to do a peer-to-peer? 

  • Does my coverage make sense?
    • Are providers transparent about how much something may cost?
  • Are terms explained?
  • Can I easily receive access to a care representative?

4. Does my employer offer benefits that fit what I need? 

  • Health insurance 
  • Short-term and long-term disability 
  • Options for FSA and/or HSA accounts 
  • Employee assistance programs 

5. Are the medications that are prescribed working as intended? 

  • Do I understand how to use them correctly? 
  • Do I feel comfortable telling my doctor if I have any side effects and need to switch to something else? 
  • Are they affordable or are there alternatives? 

6. Is a patient portal available and easily accessible? 

  • Is it easy to find what I’m looking for? 
  • What capabilities does the portal have?
    • Can I message my provider?
    • Can I view lab and imaging results?
    • Can I schedule appointments and see upcoming appointments?
    • Can I see visit summaries of previous appointments? 

February 2022 Digital Health Round Up

Technological advances show promise in the areas of cancer prevention, diagnosis, and treatment. During the pandemic, the virtual visit was introduced to adapt to the changing needs of healthcare. Healthcare providers and patients have demanded that telemedicine evolve to provide for an effective patient experience. Providers are harnessing the power of technology to make a less invasive way to diagnose colon cancer, which is the 2nd leading cause of cancer deaths in the United States. Two Squadrons at Keesler Air force base are joining forces and using digital health technology to make radiation therapy for cancer patients safer and more precise.

The Virtual Visit

This trend is here to stay; 76% of Americans indicated that they plan to use telehealth either more or at the same rate, even after the pandemic subsides, reports MedCityNews.com . To provide “distributed care” or care that is brought to the patient instead of the patient going to the care. It requires data and artificial intelligence (AI) to drive the digital health experience.  Healthcare providers use data and clinical history to create a strong patient relationship. The digital interaction is documented and can be shared with other providers to provide continuity. Providers create easy to use platforms to make appointments, view records, and link to the virtual visit all from one site. Telemetry tools are available to monitor patient conditions at home and use diagnostic tools to input for AI algorithms. Insurance companies and Medicaid offer billing codes and reimbursement for virtual visits. There are guidelines in place for data governance to insure patient privacy. Find more information here.

Cancer Detecting Pill

The Colon Capsule Endoscopy device, or Pillcam, passes through the digestive system taking 50,000 pictures of the bowel on its way, reports BBCNews.com . This pill camera requires the same preparation as a colonoscopy and has been used on its 2000th patient in Scotland. The pill still must be swallowed in the hospital setting but the patient can go home as it passes through their system. The patient wears a recorder on their waist to record the images.  Many patients have a fear of having a colonoscopy and avoid getting the procedure done. The Colon Capsule Endoscopy device is less invasive than a colonoscopy, it’s painless, and there is no sedation required.  Pillcam allows for early detection of colon cancer and therefore the patient gets treatment faster. Find more information here.

Customized Care for Cancer Patients

In an effort to make radiation therapy for cancer patients more accurate and effective, the 81st Diagnostic and Therapeutic Squadron joins forces with the 81st Dental Squadron to shape radiation bolus for each patient, reports WXXV25.com. They use digital dentistry software in combination with 3D Printers to help cancer patients by making an artificial surface specific to each patient.  This artificial surface acts as a barrier, allowing the radiation to work, as well as make the radiation bolus specific to each case. During the radiation bolus, the machine scans the patient’s face creating a custom prosthesis that can be used every time there is a treatment. This process makes the radiation therapy more precise and safer for the cancer patient. Find more information here.

Top Ten Writing Tips and Techniques For Patient Advocates

Patient advocacy involves sharing your unique knowledge and experience with a disease or condition with the ultimate aim of raising awareness and influencing people to effect the desired change.

As patient advocates, we need a variety of tools in our advocacy toolbox in order to effectively advocate for our cause. One of the most important tools is the ability to write compellingly for a variety of audiences and formats.

Whatever audience you’re writing for, there are some basic “rules” to follow. Incorporating these into your writing will help you become a better and more persuasive writer.

1.Use Plain English

Using plain everyday words and avoiding jargon as much as possible is the first rule of good writing.  For example, instead of “commence”, write “start”; instead of “in the event that”, use “if”. To quote the great writer Mark Twain “don’t let fluff and flowers and verbosity creep in.”

Medicine is full of abbreviations, scientific jargon, and medical terminology that not all readers will understand. People read at various levels. Knowing and understanding the audience for whom you are writing is crucial when creating content. Most people overestimate their readers’ knowledge. When writing, consider your intended audience’s level of medical knowledge.

2. Write in a conversational tone

Write as if you were speaking directly to the reader. Using pronouns like “we” and “you” fosters a sense of relatability and trust. The idea is to engage the reader and personal language does just that. It’s important to create a consistent tone of voice in your content, and at the same time, choose the tone that suits your audience.

3. Write short sentences and paragraphs

To separate sections of information, use headings and paragraph breaks. follow the one-idea-per-sentence rule. Presenting information in short, manageable chunks helps you keep the reader’s attention.

4. Avoid using the passive voice

One of the tell-tale signs of scientific writing is the use of passive sentences. To make sentences more direct, use the present and active tenses instead. The term “active voice” refers to a sentence that has a subject that acts on its verb. The passive voice indicates that a subject is the object of a verb’s action.

Active Voice: ”the nurse can vaccinate your child”

Passive Voice: “your child can be vaccinated by the nurse”

Take note of how the sentence in “active voice” is shorter than the sentence in “passive voice.” Passive voice sentences usually require more words, such as “was” or “are.”

5. Cut out the deadweight

If you want your sentences to be shorter, remove unnecessary words (‘very’ is a classic offender). To help you avoid overused cliches and phrases you could try a tool like ClicheFinder.net. This simple tool finds and highlights words, expressions, and phrases in your sentences that are trite, stale, or overused to help you improve your writing.

6. Use the rule of three

In the sentence above, you’ll notice that I used the  “rule of three” (“trite, stale, overused”).  This “rule” is based on the idea that reading about things that come in threes is inherently satisfying. Consider the impact of phrases like “faith, hope, and charity” or “mind, body, spirit.” Using the rule of three in your writing helps the reader remember your points.

7. Craft compelling headlines

Consider how many headlines you read every day while searching the web or scrolling through social media. What makes you want to read an article or a blog post? It’s frequently the headline. Your headline is likely to be the first (and possibly only) impression you make on a potential reader so it pays to take time over crafting a compelling title. There is no hard and fast rule for how long your title should be, but try not to make it any longer than necessary. Aim for 6–10 words or 50–60 characters as a rough guideline.

The next time you write a headline, you might consider trying the following tips.

  • Personalize your title by adding a “You” or “Yours.” This makes your headline more effective since it speaks to your readers’ concerns and sounds more conversational.
  • Avoid the passive voice in your titles. Use strong action-oriented words and instead.
  • By nature we are curious beings, so try to leverage that curiosity in your titles.

8. Hook readers with your opening paragraph

You’ve piqued a reader’s interest with the headline; now you have the chance to pique their interest even further with the first paragraph. Make sure your opening sentence grabs the reader’s attention right away. Telling a story, sharing an eye-catching statistic, or using a memorable quote are all effective ways to accomplish this.

9. Share personal stories

As I mentioned above one of the most effective ways to capture attention is by sharing a story.  Writing is more than just disseminating information. It should also make people feel something. Your brain reacts differently to a story than it does to any other type of information, including straight facts and data. While facts and figures engage only a small portion of the brain, stories engage multiple brain regions that combine to create rich emotional responses.

Storytelling is one of the most powerful ways to breathe life into your writing. To quote a  North American Indian proverb “Tell me a fact and I’ll learn. Tell me a truth and I’ll believe. But tell me a story and it will live in my heart forever.”

10. Proofread before publishing

You should always proofread your work before publishing it. Choose a quiet, distraction-free place to do so. Turn off your phone, television, and radio so you can focus fully on the task at hand.

It helps if you print out your document. You’ll always notice more errors on a printed copy of your work. Using a blank sheet of paper to cover up the lines below the one you’re reading keeps you from skipping ahead of possible mistakes.

Another helpful suggestion is to read it aloud. When you read aloud, your ear may pick up on errors that your eyes may have missed. It’s especially useful for identifying run-on sentences and identifying those that don’t flow or make sense.

Aside from obvious spelling  mistakes, check for the following:

  • Have you used correct punctuation? Poor punctuation really undermines your professionalism. Pay particular attention to misplaced (or missing) commas and apostrophes. One of the most common mistakes is confusing “its” and “it’s.”
  • Are there any long sentences you can shorten?
  • Are you using the passive voice in your sentences? If so change to an active voice.
  • Do your paragraphs flow logically with smooth transitions between each paragraph and from one idea to the next.
  • Are there any sentences that are repetitious? Or are there any parts of the piece that need more context?
  • Have you referenced your quotes and facts correctly? If you are presenting facts in your content, be sure the sources are reliable. Check and re-check the source of quotes and statistics.
  • When publishing your writing online, such as on a blog, ensure that all links to external sites are functional and that the post is properly formatted. If you have a WordPress blog, I highly recommend installing the Yoast SEO plugin, which evaluates your post’s readability, flags passive sentences, and reminds you to use relevant keywords to improve web searchability.

Ideally, you should let your writing rest for a day to gain a new perspective on it. Better yet, have someone you trust proofread the text for you. You may be surprised at how many mistakes you missed.

Finally, one last point. End with a strong call to action. After reading your piece, what is one thing you want readers to remember or take action on? In your conclusion, motivate and empower your readers to put the information you have provided into practice.

Writing is a skill that improves with practice. I hope you find these tips helpful and encouraging as you work on improving the important skill of writing to persuade and inspire your audience.

January 2022 Digital Health Round Up

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

Healthcare Technology

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

Artificial Intelligence to Support Both Caregivers and Patients

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

Artificial Intelligence to Help Patients Avoid Excessive Radiation

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

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

Managing Medical Mistrust: Creating a Healthy, Trust-Based System

If there’s anything “positive” that has come out of the pandemic, it’s that it has brought to light the many disparities that are still prevalent in healthcare. These have translated into disparities in the Covid world based on where people live, their education level and income, and their race, among others.

The same can be said about oncology specifically. Health disparities in the diagnosis and management of cancer can be described as being “higher cancer death rates, less frequent use of proven screening tests, and higher rates of advanced cancer diagnoses.” This was (and still is in some areas) exacerbated by the pandemic, where patients either opted to delay treatment or were told they couldn’t undergo treatment because of the surge of Covid patients in clinics and hospitals. Additionally, there have been delays in patients undergoing screenings for cancers, including colon, cervical, and breast cancers, especially among those of racial and ethnic groups, who already had a decreasing level of access to healthcare services at the beginning of the pandemic.

Undoubtedly, this has increased the level of mistrust in the healthcare system. How are patients supposed to get the care they need? How do providers increase their level of trust with their patients who are already at a disadvantage and have a greater risk of becoming infected with Covid or any other disease? Below are ways the healthcare system can bring patients and providers together to create a healthy, trust-based system:

Providers should:

  • Establish empathy and understanding of patients’ needs and values (and reiterate them back to the patient)
  • Offer different treatment options, if available. Be willing to discuss the pros and cons of each option, including recommendations
  • Discuss clinical trials as a treatment option, if applicable. Yes, healthcare is a business, but instead of a provider seeing it as “giving up” a patient, understanding that the patient’s health and well-being comes first is much more important
  • Work with the patient’s insurance, if necessary, for prior-authorizations on medications and procedures
  • Be honest with your patients. Gauge and/or ask about the amount of information they can handle when providing a diagnosis
  • Tell a patient if they don’t know something and/or if errors have been made. Being vulnerable and transparent in this regard demonstrates that you’re human

Patients should:

  • Be respectful of the physician’s (and other patients’) time during each appointment by bringing in a list of questions that need to be answered
  • Utilize patient portals!
  • Ask questions if unsure of anything spoken about during an appointment, especially medications
  • Be your own advocate when discussing your health (i.e. bring up why certain solutions are important to you)
  • Understand there are multiple patients being taken care of and no one patient’s needs are more or less important than another

Mind The Gap: How To Handle A Cancer-Related Absence In Your Work History

Are you looking for a new job after cancer treatment? Perhaps you left your last employment after your diagnosis, or maybe you are still in your current job but want a fresh start in a new position, one which offers you more flexibility or a new career direction.

If you had to leave a job to undergo treatment, this brings up the question of how to explain those missing months (or years) from your work history. How do you account for this time when updating your resume? Will you be expected to talk about it at an interview?

Let’s start with your resume.

For the moment, put aside any worries you may have about how to explain the gap in your job history. Instead, grab a pen and a piece of paper and list at least ten great qualities and skills you have. Ask your friends and family to help you brainstorm the list if you get stuck.

When it comes to writing your resume, forego the traditional chronologically based CV (listing job titles, companies and dates in chronological order), in favor of a more dynamic skills-based resume. If you really do need to add your work history include the number of years of service, rather than detailed dates.

Go through your list from earlier and circle any skills that relate to the job for which you are applying. Add your skills in bullet point format and under each bullet point, provide an example of an area of accomplishment related to this specific skill.

Review Your Digital Footprint

One of the things that I wish now I was more mindful of at the time of my own diagnosis, is the digital footprint I was leaving for future employers to find. Many of us turn to social media sites and blogs to keep our families and friends updated on our progress and to seek support during cancer treatment. But when your focus returns to work, you may not want your employer or prospective employer to know of your cancer history.

With an increasing number of employers googling prospective candidates, you may want to take some steps to protect your privacy online.

  • Google yourself to see what people who search for you online will find.
  • Set your privacy settings on sites like Facebook and Instagram to high so that nothing will be seen by people who aren’t on your friends and family list.
  • Delete what you can from your postings on Facebook and other media that talk about your cancer.
  • Set up a Google Alert to monitor mentions for your name online.

Create A Professional LinkedIn Profile

When it comes to your digital footprint it’s not all bad news. There is still one social network that you can turn to your advantage when it comes to job seeking. Spending time on creating a professional profile on LinkedIn can be enormously helpful to present the best online impression to prospective employers. Because of the way Google’s search algorithm works, an optimized LinkedIn profile will frequently show up in the first few places of a Google search for your name.

While you may already have a profile on the platform, is it optimized for a job search? LinkedIn profile optimization simply means that your LinkedIn profile is fully updated to maximize your visibility on the platform.

Here are some quick tips to optimize your profile:

  • Make your first visual impression count by displaying a high-quality professional photo.
  • Adding a background image directly behind your photo will help brand your profile. Think of it as your professional billboard.
  • Create a strong professional headline. This is a critical step because your professional headline is not just highly visible on LinkedIn, it’s also searchable by Google.
  • Nurture your LinkedIn relationships through regular engagement. This is not about making large numbers of contacts; rather, it’s about making meaningful connections.
  • Join industry-relevant groups. Job openings are often posted by recruiters in industry groups. You will find groups by clicking on Interests > Groups from your profile or searching keywords to identify groups with interests similar to yours.
  • Be strategic about when you’re active on LinkedIn. As a general rule, LinkedIn users are most active right before and after work (7–8 am and 5– 6 pm), as well as during lunchtime.

Handling The Job Interview

Congratulations, you’ve made it to the interview stage. Remember, you do not have to mention your cancer diagnosis during either the application or interview phase. If an interviewer draws attention to a gap in your career history, have a prepared explanation that you feel comfortable with – for example, you might put the gap down to personal issues that are resolved now. Then turn the conversation back to your strengths and suitability for the job. The more you prepare your answers prior to the interview, the more relaxed and at ease, you will come across during the interview.

Of course, you may decide to be upfront about your cancer diagnosis. Salivary gland cancer survivor and author of Travail et Cancer, [1] Magali Mertens de Wilmars, encourages job seekers to ask themselves “if you want to work for someone who would take the fact that you’re a cancer survivor as a weakness?”

What If You Decide Not To Conceal Cancer?

Everything I’ve written thus far supposes you have finished active treatment. What happens, if, you are, in the words of melanoma patient, Kay Curtin, “a cancer patient, who is well, but will always be in treatment,”? “Would we have the same resistance to disclose if say we were diabetic?” she asks. “How will I be perceived by potential employers, will they want to invest in me or is self-employment the lesser of two stressors?”

My own decision to start a blog after my breast cancer diagnosis sealed my fate for the future. It has forced me to be open about my cancer history, a decision which in turn catalyzed a new (self-employed) direction for my career. For me pivoting my career to patient advocacy is one of the more positive things to emerge from cancer. Perhaps this too will be an opportunity for you to reconsider how, instead of concealing your cancer history, you might use the experience to decide on a new direction for your own life.

Notes

[1] Travail&Cancer (travailetcancer.org)

Understanding the Oncology Care Model

Some of you may have received a letter from your oncologist notifying you that your oncologist is participating in a program called the Oncology Care Model. It was sent out to Medicare patients who are currently being treated by this provider. This letter informs you that you still have all the Medicare rights and protections including which health care provider you see. However, if you do not want to participate in this program, your opting out will require you to find a new provider. This can be very daunting for a patient that has been getting care and have a relationship established. Therefore, I want to give a brief overview of the Oncology Care Model, (OCM).

This program was developed by the Center for Medicare and Medicaid Innovation (Innovation Center) which was established by the Social Security Act and added to the Affordable Care Act. Its purpose was to test innovative payment and service delivery models to reduce program expenditures and improve quality for Medicare, Medicaid, and Children’s Insurance Program beneficiaries. The practices participating in this program have committed to providing enhanced services to Medicare beneficiaries, which includes care coordination and navigation, and to using national treatment guidelines for care.

Because cancer is such a devastating disease and because a significant proportion of those diagnosed with cancer are over 65 years of age and Medicare beneficiaries, this provided the OCM, CMS, in partnership with oncologists, other providers and commercial health insurance plans, the opportunity to support better quality care, better health, and lower cost for this patient population. It is intended to improve our nation’s health by providing clear measurable goals and a timeline to move Medicare and the US healthcare system toward paying providers on the quality of care rather than the quantity of care that they give their patients.

OCM focuses on Medicare Fee for Services beneficiaries receiving Chemotherapy treatment and includes the spectrum of care provided to a patient during a six-month episode that begins with chemotherapy.

The benefit to the patient would include enhanced services, including

  • The core functions of patient navigation to find other patient-focused resources.
  • A care plan that that meets your needs
  • Patient access 24 hours a day, 7 days a week to an appropriate clinician who has real-time access to the practice’s medical records: and
  • Treatment with therapies consistent with nationally recognized clinical guidelines.

There is no additional cost to patients to participate in this program. Medicare will pay for the full amount of the services. There is however a survey that patients would need to participate in to provide feedback to help improve care for all people with Medicare.

To get a good understanding of this program so that you can make the best decision regarding your care, don’t hesitate to share with your treatment team any questions or concerns you may have. Visit online at www.innovation.cms.gov/initiatives/oncology-care or call 1-800-MEDICARE (1-800-633-4227).

November 2021 Notable News

Cancer research has come a long way in the last half century. Each month there is an amazing amount of new knowledge. There’s new information this month about childhood cancer, prostate cancer, pancreatic cancer, and a couple of vaccines. The research and advances we learn about each month are due in large part to the programs and systems that resulted from the National Cancer Act of 1971.

National Cancer Act of 1971

Fifty years ago, a few days before Christmas, President Richard Nixon signed the National Cancer Act of 1971, and the National Cancer Institute (NCI) is commemorating the anniversary at cancer.gov. The act established networks of cancer centers, clinical trials, data collection systems, and advanced research. As an amendment to the Public Health Service Act of 1944, by signing the act, Nixon declared a war on cancer. The bill expanded the authority of the director of the NCI and made possible many of the present-day advances in cancer research. Learn more about the National Cancer Act of 1971 and the impact it has had over the past 50 years here.

HPV Vaccine

One of the accomplishments noted by the NCI is the HPV vaccine. The vaccine for the human papillomavirus (HPV) is reducing the number of cervical cancer cases by almost 90 percent, says bbc.com. Almost all cervical cancer cases are caused by HPV, and cervical cancer is the fourth most common cancer in women worldwide. More than 100 countries are using the vaccine to help in the World Health Organization’s goal to eliminate cervical cancer. With such positive results in the United Kingdom, the hope is that the vaccine will have an even bigger impact in lower income countries. Read more here.

Covid-19 Vaccines

Covid-19 vaccines are safe and effective for most cancer patients, reports usnews.com. In a study that included more than 1,000 vaccinated cancer patients, researchers found that the vaccines were effective in protecting cancer patients from severe Covid-19. Patients who had been treated with chemotherapy, bone marrow transplants, or corticosteroids had a weaker immune response, but still benefited from the vaccine’s protection. Cancer patients had similar side effects as healthy vaccine recipients. Get more information here.

Pancreatic Cancer Detection

Researchers have identified two additional symptoms of pancreatic cancer that could help with earlier detection of the disease, reports webmd.com. The newly identified symptoms are feeling thirsty and having dark urine, and they are associated with the most common type of pancreatic cancer. Other symptoms include problems swallowing, diarrhea, vomiting, weight loss, abdominal swelling, tiredness, constipation, back pain, itching, loss of appetite, change in bowel habits, indigestion, abdominal pain, abdominal mass, nausea, flatulence, heartburn, and fever. Patients can have symptoms for up to a year before diagnosis. Get more information here.

Gut Microbiome and Prostate Cancer

A new study shows that there might be a link between the gut microbiome and deadly prostate cancer, reports medicalnewstoday.com. Researchers analyzed different metabolites in the blood serum of study participants and found a connection between aggressive prostate cancer and three of the metabolites. The metabolites, phenylacetylglutamine, choline, and betaine, are either produced by the gut or found in some foods. The metabolites are mostly found in meat and animal products, but also in beans, nuts, and diet sodas with aspartame. Men with high levels of choline or betaine were two times more likely to die of prostate cancer, and men with high levels of phenylacetylglutamine were 2.5 times more likely to die of prostate cancer. Learn more about the study here.

Childhood Cancer Survivors

Childhood cancer survivors tend to have higher risk of lifelong health problems, reports medicalxpress.com. A new study shows that the type of cancer and how the cancer was treated can affect the type of health issues survivors will have later in life. Researchers found that people who were treated with chemotherapy and radiation were most likely to experience later health problems. The lowest risk was for people who were treated only with surgery. Researchers say the long-term health effects should be considered when discussing treatment options for young people with cancer. Learn more about the study and watch an animated video that explains the study in an easy-to-understand manner here.

Here’s hoping that we will have more preventive vaccines and life-saving measures before the passing of the next 50 years.