Tag Archive for: cancer patients

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.

How the Physician Shortage May Affect People With Cancer

Cancer is a journey that no one wants to take. Yet every day, research is yielding new insights into this fierce adversary, technology is equipping patients with powerful new weapons with which to fight, and treatments are emerging which are boosting both survival rates and patients’ overall quality of life.

Because of this, cancer patients are more informed and more empowered than ever before. Unfortunately, however, there are still things about the cancer journey that are outside of the patients’ control. Among these is the persistent, and worsening, physician shortage.

Origins and Impact of the Physician Shortage

Health leaders, healthcare providers, and patients alike have long recognized that the shortage of primary and specialized care physicians is real, enduring, and detrimental to patients and care workers alike. Experts predict that, in the coming years, the field of oncology is likely to be especially adversely affected by the lack of cancer physicians.

According to recent estimates, the number of patients requiring chemotherapy treatment is expected to rise from 9.8 million to more than 15 million by the year 2040. But even as the demand for oncologists is predicted to surge in coming years, the supply of practicing specialists continues to shrink as current practitioners reach retirement age and leave the field.

The Impact on Cancer Patients

In the face of a physician shortage fueled by rising retirement rates and surging demand, cancer patients may expect some significant changes in how they receive treatment.

The Increasing Role of Nurses

As the physician shortage worsens, nurses are increasingly stepping in to fill the care gap. Not only are nurse practitioners gaining the authority to provide comprehensive patient care, but many nursing specialists including Doctors of Nursing Practice (DNP) are coordinating clinical practices, providing nursing training, and conducting advanced research to optimize patient care.

As healthcare providers turn to high-level roles other than that of the MD, cancer patients should expect to receive care from an array of practitioners, including experts in nursing practices. Cancer patients will benefit from this by having more options to tailor their treatment plans to their particular needs, goals, and values.

For example, DNPs are often strongly connected to clinical research. For patients who are also interested in participating in clinical trials, a DNP can empower patients by offering guidance, support, and access to experimental treatments that might otherwise not have been available through more traditional care methods.

The Ascendancy of Telehealth

In addition to receiving significant amounts of care from nurses and related specialists, the physician shortage is likely to also change cancer treatment through a greater emphasis on telehealth. Though telehealth long predates the outbreak of COVID-19, its efficacy as a treatment tool for the most vulnerable patient populations was truly revealed during the height of the pandemic.

For example, at-risk patients were able to access their healthcare team through virtual consultations from the safety of their own homes without risking exposure to the virus. During this process, many realized that telehealth could streamline healthcare processes and reduce pressure on the overall healthcare system.

As the physician shortage worsens, the healthcare system will likely turn increasingly to telehealth to ensure consistency and quality of care while driving system efficiency. In addition, technologies such as health apps and remote patient monitoring devices will allow healthcare teams to maintain a close watch over patients whenever and wherever needed, reducing the need for hospitalizations and clinical consultations.

The Impact of COVID-19

In addition to the rising tide of planned retirements, the devastating impacts of COVID-19 on healthcare providers are likely to contribute to the physician shortage. As new coronavirus variants emerge and the pandemic worsens, physicians are at significant risk of burnout due both to physical and emotional fatigue.

In light of this, cancer patients will likely notice an increased prioritization of infectious disease prevention in their treatment plan. For example, physicians are increasingly finding themselves battling vaccine hesitancy. For doctors who have dedicated their lives and careers to caring for cancer patients, misconceptions regarding the safety and efficacy of vaccines, and the loss of life such misinformation may lead to, can take a devastating toll on healthcare workers.

As a result, cancer patients are likely to find that vaccinations and boosters are strongly encouraged by healthcare providers as an essential standard of care. As vaccine acceptance rates grow, particularly regarding the COVID vaccine, not only will patients be more protected, but the psychological burden of care and risk of attrition for healthcare providers will also ease.

The Takeaway

The physician shortage is impacting patients and healthcare providers alike. However, cancer patients are likely to feel the impacts of this shortage most strongly. As a result of the shortfall, approaches to care will likely change to rely on specialty practitioners and telehealth technologies, and disease prevention will increasingly become a priority.

7 Things People with Cancer Need to Know About Infection

Everyone living with cancer understands the dangers of their disease. But did you know that infections cause, or are involved in, about 60% of all deaths for cancer patients? This is because many cancers, and many cancer therapies, can weaken your immune system. As you enter each phase of treatment, your doctors will prepare you for what to expect, but here are 7 things every patient with cancer — and those around them — need to know about infections. 

1. Know if you’re at risk, and when.

 Almost 20 million people are diagnosed with cancer each year, and nearly all cancer patients are likely to be immunocompromised at some point (or points) of their disease course. Hematologic cancers like leukemia, lymphoma, or multiple myeloma can weaken the immune system themselves, and certain solid cancers are related to diseases that weaken the immune system, like AIDS.

But even if your disease doesn’t impact your immune system, the treatment might. Most patients undergo treatments with chemotherapies, which attack the fast-dividing cells of the cancer, but also bone marrow that manufactures immune cells. Similarly, common treatments for blood cancers involve destroying and replacing bone marrow to reboot the immune system. Your doctor will inform you if you enter a treatment phase that requires extra caution and vigilance.
 

2. Understand the dangers of infections for the immunocompromised.

Patients with cancer may have unique challenges from infections that people with fully functioning immune systems may not. The most obvious issue is your body can’t mount its usual defense, leaving you unable to fight off what would be otherwise routine illnesses. Also, you are susceptible to certain types of pathogens, like certain fungal infections and hospital-acquired infections, that a healthy immune system would block early.

Importantly, your body’s common tools against infection — fever, inflammation, increases in certain easily-detected immune cells — are often the telltale signs of an infection. If they don’t occur normally, it’s easier to miss red flags of early disease, when treatment is often easier.

3. Protect yourself to avoid infection.

The best defense against infection is to not get one. Living through the pandemic has likely made you familiar with some common tools and strategies to minimize exposure to infectious diseases: wear the right mask, wash your hands frequently, and avoid contact with sick people and crowds. Vaccines can be important armor against infections, especially if you are not yet immunocompromised — but may become so later in treatment. (Your doctor can guide you on which vaccines to update.)

If you are already immunocompromised, it’s important for those around you with healthy immune systems to get vaccinated. They become your first line of defense.

If your white blood cell counts are low, you are considered neutropenic. Neutropenic patients should avoid hiking, where you risk exposure to molds growing in natural environment that might be dangerous. Similarly, avoid construction sites, which tend to aerosolize dirt — increasing the spread of dangerous pathogens.

4. Know the signs of infection.

Sometimes getting sick may be unavoidable. Infections may present differently in immunocompromised patients, depending on the type of infection, immune status, and how far a disease has progressed. But there are signs to watch for: 

Fever.

This is the number one red flag, though it can be hard to interpret. When patients with low white blood cell counts have a fever it’s called febrile neutropenia. Because of the danger in developing a blood infection that escalates to life-threatening sepsis, patients will often be placed on broad-spectrum antibiotics immediately when presenting with a fever, though more accurate treatment. Fever, however, can also be a sign of cancer progression. 

Respiratory symptoms.

Things like shortness of breath or difficulty breathing can be signs of lung infection and pneumonia. 

Acute pain.

As with many symptoms, pain in the chest or abdomen are not necessarily signs of infection, but need to be investigated in immunocompromised patients 

Weight loss.

Weight loss is associated with serious infections like tuberculosis, which may be slow to show symptoms in patients with compromised immune systems. 

Fatigue.

Another symptom that can have many causes.

5. Have a plan.

Don’t let the signs of infection catch you off-guard. The point at which you’ll be most at risk of infection is often predictable — for example, when white blood cell counts have dropped just after chemotherapy. This can help you prepare and stay vigilant.

Typically, doctors will advise blood cancer patients with signs of infection not to go to an emergency room — mixing with a general population of acutely ill patients could expose you to other dangerous pathogens. 

But that doesn’t mean to ignore symptoms or avoid care — if you wait until you experience drops in blood pressure or spiking fever, the outcomes could be worse. Instead, many oncologists recommend you call your cancer clinic, where your potential infection can be addressed by your doctors in a controlled setting. It’s understandable that patients will not want to be admitted too early, but early treatment tends to give better results. Make a plan with your specialists before you wind up in harm’s way. Speak with your family members so they know how to help you if you are in need. And know where you need to go.
 

6. Stay safe in the hospital.

The most common infections for immunocompromised patients are from opportunistic pathogens. This can include hospital-acquired infections, which is why most specialists will help you try to avoid the hospital if possible.

But sometimes it’s unavoidable. In these cases, you will most likely be transferred in from your cancer center or — after a phone call to your specialist — directly from home, avoiding the ER. Often, this means you will be in a dedicated cancer ward, intensive care, or otherwise segregated from people with normal immune systems. In any event, health care providers will be wearing masks and other protective gear to prevent exposing you to new pathogens. Hospitals also have additional safety protection like HEPA air filters and rigorous protocols to prevent contamination.
 

7. Be ready for the fight.

Clinicians will often use empiric antimicrobial therapy for cancer patients showing signs of infection. Under this approach, doctors begin the process of testing for the specific pathogen, but simultaneously start the patient on a broad-spectrum antimicrobial therapy while waiting for the results of testing. If testing can identify a specific cause, the doctors can switch to a more directed therapy that is appropriate for the specific illness.

If they can’t, there is still a chance the signs of infection will resolve, sometimes without ever finding a specific diagnosis. Those patients may have endured additional suffering, remained at elevated risk for new infections in a hospital setting, or encouraged antimicrobial resistance by treating a pathogen with an inappropriate treatment course. In the worst-case scenario, failure to identify the right pathogen may lead to worse outcomes for the patients.

The good news is that diagnostic testing is improving, and there are novel, highly accurate tools to help doctors get their patients on the most appropriate therapeutic course faster. This means directed treatment for more patients, earlier in the course of disease, for better outcomes with less antimicrobial resistance. 

Ten Things You Should Never Say To A Person With Cancer…And One Thing You Should

I get it. People so often just don’t know what to say to someone with cancer.

It’s a shock when someone you care about has received a life-changing diagnosis. Our natural instinct at times of trouble is to rush in with well-meaning phrases and encouraging thoughts.

It may feel to the person saying these things that they are being supportive, but it’s all too easy to say the wrong thing.

So what should you avoid saying to a cancer patient? The following list includes some of the most common things that we in the cancer community have heard from well-wishers. At the end of the list I share the one thing I would have most liked to have heard instead.

1. You’ll beat this

Probably the top-most thing that people say when they want to be supportive is that you’re strong and will beat cancer. While we all hope for the best outcome, we cannot actually be sure of the outcome of the disease for anyone. As breast cancer blogger Nancy Stordahl writes in What Does Beating Cancer Mean Anyway? [1] ”Struggling to live up to some gold standard of what beating cancer means, adds to the already exhausting burden. We need to stop patronizing and judging cancer patients based on misguided battle talk analogies. Cancer isn’t an opponent in some war game you can stomp out by mindset or determination.”

2. You’re so brave

An extension of “you’ll beat this.” This can come across as quite patronizing – especially when it’s followed by a statement like “I couldn’t do it.” The truth is we don’t feel particularly brave, we just don’t have a choice. We do what we have to do to get through treatment the best we can. By promoting belief in bravery and stoicism in the face of cancer, society creates unfair expectations of cancer patients and deprives us of an outlet for our darker fears.

3. My aunt had the same cancer and she was cured

While I’m happy your aunt recovered from cancer, no two cancers are alike. Cancer is a complicated disease and chances are her cancer is not the same as mine. An alternative version of this statement concerns an aunt who died from the “same cancer”. Please don’t go there with us.

4. What’s your prognosis? What are your odds of surviving?

Never, ever ask anyone this question. It is highly personal, intrusive, and insensitive. Enough said.

5. Have you tried [insert latest miracle supplement or diet]. I hear it can cure cancer.

There’s no shortage of advice urging cancer patients to eat a particular food, juice religiously, or try a miracle supplement, however, there’s no scientific evidence that these work and many are downright harmful.

6. The stress of [your divorce, bereavement, job loss] probably caused your cancer.

This is a variation of the “you’re to blame” for getting cancer brigade. “Did you smoke?” asked of lung cancer patients. “Did you breastfeed?” directed at breast cancer patients. All said with the implication that you should/shouldn’t have done a certain thing and really it’s your own fault for getting cancer. In fact, using a statistical model that measures the proportion of cancer risk, across many tissue types, scientists from the Johns Hopkins Kimmel Cancer Center published a study in 2015 which concluded that two-thirds of the variation in adult cancer risk across tissues can be explained primarily by “bad luck.” In other words, a major contributing factor to cancer is in fact beyond anyone’s control.

7. But you don’t look sick

This sounds almost accusatory. As if to be a card-carrying cancer patient you must look the part of a cancer “sufferer”. As cancer patients, we have good days and bad days. On the good days, we look just fine. Other days not so much. How we look is not a reflection of what we are going through.

8. It’s only hair, it will grow back

On the flip side of #7, there are those comments you receive when you do show signs of being a cancer patient. When you lose your hair after starting chemotherapy, you may find your distress dismissed with “it’s only hair, it will grow back” or “lucky you have a nice shaped-head – you can carry off the bald look”.

9. Look on the bright side, at least you will lose weight without having to diet

The crassness of this statement seems hard to believe – but yes, it has been said to cancer patients. Another variation on the looking on the bright side theme – breast cancer patients quite often have to deal with people saying to them “at least you’ll get a free boob job.”

10. You must stay positive

I’ve saved the best for last. Ok, I admit that I caved in when I was first diagnosed with breast cancer to the pressure to be positive because it reassured the people around me. While I accept that for some people, maintaining a positive attitude is a valid coping mechanism, for myself, and for many others, being asked to always show our sunny side is a denial of the times we are in pain, anxious, and afraid.

So what should you say to someone with cancer?

Sometimes there are no right words to say. Sometimes the best you can do is listen, without judgment, without offering any well-meaning advice.

Author Rachel Naomi Remen says it better than I ever could.

“Perhaps the most important thing we ever give each other is our attention…. A loving silence often has far more power to heal and to connect than the most well-intentioned words.”

Having listened first, you could then say something like the following:

“I can’t begin to understand what you are going through/ I am so sorry you have to go through this. I am here for you. What one thing can I do for you right now?”

Knowing we’ve been heard and understood opens up a space for us to feel freer to ask for what we truly need at this moment.


[1] Nancy’s Point What Does Beating Cancer Mean Anyway?

September 2021 Digital Health Roundup

More and more technologies, from gaming technology to artificial intelligence, are being used in the quest to beat cancer. Electronic appointments are helping with taking medicine, and steps are being taken to protect patient data.

The Federal Trade Commission (FTC) is working to combat breaches of personal data by making health apps more accountable when it comes to telling patients their data has been exposed, reports mobihealthnews.com. In a recently released statement, the FTC announced that health apps will need to notify users, the FTC, and possibly the media when data is compromised, and if they fail to make the notifications, they could be fined more than $40,000 a day. Learn more here.

Electronic directly observed therapy (eDOT) is a technology that is becoming more popular for providing medical services to patients, especially when it comes to taking medicine correctly, says ardorcomm-media.com. The eDOT appointments can be scheduled live, or they can be recorded. Providers can ensure that medications are taken properly and on time, and they can observe any side effects that may occur. Providers can also provide coaching or training during the appointments. The eDOT appointments require less time and resources than in-person visits. Find out more here.

Researchers are using 3D printing to create models of glioblastoma tumors, reports reuters.com. The models are made by taking part of the tumor from the patient’s brain and using it to print a 3D model of the tumor and then to fill it with the patient’s blood, creating a viable tumor. Researchers are then able to test how well various treatments will treat the tumor before they try them on the patient. Glioblastoma is the most common brain cancer in adults and is an aggressive cancer with poor prognosis. Learn more here.

Researchers have been inspired by gaming technology to create a virtual tool to study cancer, reports webmd.com. The tool, a virtual cancer tracker named Theia, for the Greek goddess of sight and clairvoyance, allows researchers from around the world to interact and study the cancer using 3D models and virtual reality. Get more information here.

A new type of artificial intelligence (AI) is being developed to detect lung cancer, says genengnews.com. It is a blood testing technology that can potentially detect over 90 percent of lung cancers. The test is called DELFI, which stands for DNA evaluation of fragments for early interception, and it can detect the fragmentation of DNA from cancer cells that circulate in the bloodstream. Researchers are hopeful that if lung cancer screening is as simple as a blood test, more people may get screened, and the cancer could be detected at earlier, more treatable stages. Learn more here.

12 Best Practice Tips To Design Helpful Patient Information Materials

As a patient advocate, you may be asked to help review or co-design patient information materials. Or you may wish to create the information yourself because you’ve noticed a gap in helpful information for your patient community.

Good patient information is important for several reasons.

Firstly, it reinforces what a healthcare provider has told the patient. If, due to stress, a patient hasn’t absorbed the information from their provider, a brochure or information sheet serves as a reminder.

Secondly, by educating patients, good information empowers patients with the knowledge, understanding, skills and confidence to take an active role in their health and wellbeing.

Thirdly, by sharing the information with friends and family, their loved ones can take a more active role in supporting the patient.

Whether it’s information for a brochure, leaflet or website, the same design principles apply. Information design should make complex information easy to use and understand, and ultimately empower patients to take a more active role in their care.

The following checklist is designed to help you in your own advocacy work when you are called upon to design patient information materials.

1. Know Your Purpose and Audience

Before you start, consider the purpose behind creating this information. What do you wish to achieve? For example, do you wish to increase understanding or raise awareness of a disease, or give instructions about a procedure or a medication?

Next, who are you creating this information for? Who is your intended reader? Are there health literacy challenges you will need to address with this audience? Consider if audio or video is needed if there are challenges for your audience in reading the information. Consider also if English is not a first language for your intended reader, will you need to create multiple versions of the content in different languages?

2. Use Plain English

Plain English is a way to write and present information so a reader can understand and act on it after a single reading.

Use plain, everyday words. For example, instead of “commence”, write “start”; instead of “in the event that”, use “if”.

Avoid jargon and acronyms. If you have to use medical terminology, explain the terms as you go along. If this clutters up your text, put the explanations in a glossary.

3. Write From The Perspective Of A Newly Diagnosed Patient

As patient advocates, we have most likely been immersed in our disease space for many years. We have become experts in the terminology and language of the medical world. We understand side-effects and know how to weigh up the pros and cons of treatment. But experts are made not born. Think back to those first few days and weeks of diagnosis. Remember the confusion and the uncertainty you probably felt at the time. Put yourself back into those shoes of a newly diagnosed patient and communicate from this perspective.

4. Make It Personal

Write as you would speak to the reader. Using personal pronouns such as “we” and “you” helps create a sense of relatability and trust.

5. Use Direct Language

Adopt present and active tense to make sentences more direct (e.g.” the nurse can vaccinate your child” rather than “ your child can be vaccinated by the nurse”.)

6. Design For Readability

Use short sentences and only include one main point in each sentence.

Try to avoid using hyphens and semicolons.

Keep capitalization to a minimum. Capital letters are harder on the eye. Use lowercase letters throughout the text. Save capital letters for the start of sentences and names.

Left align paragraphs. Left-aligned paragraphs make text easier to read than justified text. Justified text can create gaps between words, which slows down reading particularly for people with dyslexia.

7. Avoid Dense Text

Dense text means patients lose concentration and therefore cannot find the information required. To avoid this, keep your paragraphs short. Short, clear, separated chunks of text encourage those with reading difficulty to continue reading.

Use headings and paragraph breaks to separate blocks of information.

Good use of large text, white space and columns can also help readers to more easily assimilate information. Make sure related information is located together and not split over different columns.

8. Pay Attention to Typography

Typography is the art and technique of arranging type to make written language legible, readable and appealing when displayed. No matter how well written the text is, if it is set out in a typography which is difficult to read, it is going to adversely affect readability and comprehension.

Choose Arial or Calibri type fonts for readability. When it comes to font size, 10 point is too small for most people to read. 12 point is more suitable. Choose 14 point for older people and children. 16 point is used for partially sighted people. Finally spacing between the lines should be 1.5 line spacings.

9. Use Design To Enhance Comprehension

How the information is set out in the document is an important feature of readability and comprehension. People tend to scan when they read information (this is particularly true of online information), so your document should have a logical order and structure to help readers find their way through the information.

You can achieve this in a number of ways, including the use of reversed text (e.g. white lettering on a dark background), headings and subheadings in bold font, bullet or number points. Use bold instead of italics and underlining as italics or underlining make text harder to read.

When using bulleted lists, make sure each item follows logically in sequence. Keep lists to a maximum of eight points where possible and start and end a list on the same column or page.

Tip: Use callouts to highlight key messages for content skimmers.

10. Choose Good Visuals

Visuals such as pictures, diagrams and photos can sometimes say more than words. Ensure the images you use are real, relatable and sympathetic to the reader.

Avoid idealized, ‘photo-shoot’-style images of people.

Choose images that are inclusive. Use images that don’t reinforce negative or stereotypical attitudes especially for ethnicity, age or gender.

11. Be Consistent

Be consistent in your use of design features, such as headings, sub-headings, etc. Describe numbers consistently (for example, don’t use percent on one line and fractions on the next).

12. Signpost to Other Sources of Information

Including other useful sources of information, such as helplines of patient organizations and general sources of medical information is a valuable source of further information and support for patients.

Do not confuse people by covering several treatments and conditions in the same leaflet. Tell people what other information, resources and support are available to them.

Conclusion

Next time you are called upon to design patient information materials, use the checklist in this article to guide you. Providing patients with accurate and actionable information is essential in delivering high quality care to patients and an important element in our patient advocacy.