PEN Blog Archives

Should You Mention That You Are a Cancer Survivor on Your Resume?

For many cancer survivors, the thought of getting back to work after your treatment is over can be a scary one. There are so many questions that you might have, and the idea of returning to total normality can feel strange and scary. 

This doesn’t have to be the case though and there are plenty of things you can do thrive in life after beating cancer. One of the best ways to do this is to get yourself back in the world of work. One of the biggest questions you will have about doing this, though, is going to be whether or not you should disclose information about your battle, and if so, how much? We’ve compiled a useful guide to help you work your way around some of these issues. 

Getting Back Into Work as a Cancer Survivor

Making a return to work after you have completed your treatment and received the all-clear can feel like a terrifying step. It can also be one of the most positive things you can do as a cancer survivor. 

Not only does returning to work provide you with a return to normality, but it can also remind you that there is a life away from cancer, and it’s one that involves you. You are more than just a cancer survivor; you are a great friend, a hard-working employee, and a valued member of the workforce. 

If you are thinking of returning to work, you should make sure that you have cleared everything up with your doctor or medical advisor first. You will need to make sure that there aren’t tasks that could put you at risk. You should work out the kind of schedule you will be able to work and the effects that it may have on your body. You will also have to make some important decisions about sharing your diagnosis with your colleagues and your employers.

How to Mind the Gap in Your Resume 

One of the biggest concerns for cancer survivors looking to find a new line of work is the gap in their resume. With the modern job market being such a tricky one to navigate, many feel as though having a huge gap in your resume, or applying for a job unemployed, can have a serious impact on your chances of getting employed. 

Thankfully, while a gap on your resume can appear bad to potential employers, there are plenty of different ways that you can get around such an issue. 

Put an Emphasis on Your Skills and Qualifications 

At the top of your resume, list your skills and qualifications instead of your work history. Putting an emphasis on what you can do instead of what you have been able to do is going to help show off your strengths. 

Make a list of examples underneath each of your highlighted skills and, if possible, demonstrate scenarios from previous jobs that can really help shine a positive light on you. 

Don’t Worry About Times 

If you have been out of employment for a while, then you may have some concern that you are going to be unemployable. This is a natural concern, but it is one that can be avoided. When you list your job experience, instead of listing the dates, you should list the amount of time that you worked in a job. 

For example, instead of saying – IT Manager 2016-2018, you could write, IT Manager – 2 years. While this may not prevent questions coming up in the interview concerning the gaps in your resume, it will give the chances of you being provided with a job interview a significant boost.

Mention Volunteer and Community Work

Mentioning any volunteer or community-based work that you have done can really help give your resume a boost. You should list any sort of volunteer or community roles that you have done and talk about the transferable skills that you have gained from them. This can be a great way of highlighting your skills and taking away any attention there may be from a break in employment.

Speak to a Professional

If you are really finding it difficult to navigate the career gap on your resume, then you can always consider speaking to a professional careers advisor or CV writer. These services don’t have to cost money either.

Local councils at unemployment offices may have someone on hand to help, while a lot of universities and colleges will also have career advice sectors that may be happy to lend a helping hand.

What About the Job Interview?

For many cancer survivors, the job interview itself can be the trickiest part of the process. While you are under no obligation to explain your medical history to any potential employer, there is also the possibility that they may have to take certain workplace precautions to help you with your recovery.

Fear not though, an employer can not discriminate against you because of your medical history. Equally, if you do not feel you need to disclose any information, then you shouldn’t. There may be questions that come up regarding your work history and gaps in your employment, and if you do not feel comfortable explaining that you are a cancer survivor, then you can always offer up an alternative explanation or explain that you are not comfortable talking about things.

Remember, Confidentiality is Important

The most important thing to remember is that your confidentiality is essential. If you don’t want to mention that you’re a cancer survivor either on your resume or in person, then you don’t have to.

Your diagnosis is nobody’s business, but your own. If, however, you feel as though it is best that your employer knows about your health for practical reasons, then you should also not feel like you are a burden or being difficult by doing so.

 


Alex C. Porter is a career advice expert with years of experience in the field. Right now he works at CraftResumes where he writes medical resumes, you can find more info here.

Interview with NORD Ambassador Maria Bellefeuille

Maria Bellefeuille is the NORD Rare Action Network Volunteer State Ambassador for Illinois. In advance of this weekend’s Living Rare, Living Stronger Patient and Family Forum, Maria answered some questions about being both a rare disease patient and advocate.

Advocate Perspective

Please tell us about yourself and why you decided to become a rare disease advocate?

I am a thirty-five-year-old wife, stepmother and cat mother to four! I was diagnosed with cystic fibrosis at six months of age when the life expectancy was less than 10 years old. My diagnosis in 1984 came with many uncertainties so my parents nurtured me to live a normal life which led me into adulthood wanting to learn more about my diagnosis. As an adult, I learned that advocating for myself was important and many people do not have the voice or tools to learn how to advocate for themselves. With the guidance of doctors and the Cystic Fibrosis Foundation, I decided to start my advocacy journey ten years ago. In the last three years, I found my passion and started advocating for all rare diseases.

What challenges have you faced when advocating for rare diseases? How did you overcome these?

Some of the challenges when advocating for rare diseases include understanding underlying issues such as access to care and limited resources for rare disease patients. I can not say I have overcome these issues but I used networking with others to familiarize myself with their struggles then reached out to policy makers with their stories and contact information for further assistance.

What is something that you wished you had known when you first became a patient advocate?

As a rare disease patient and advocate, I was overwhelmed at first by how many rare diseases there are but soon I learned that each patient story has similar struggles and those were the key points to advocate. These lives show power, independence and motivation in their own ways.

Patient Perspective

What has your experience as a rare disease patient taught you?

As a rare disease patient, I became knowledgeable of my own disease before finding the right care team. My care team listens to me about my concerns and we make a plan. I have learned to be open minded on trying new ways to navigate routines and situations to achieve my optimal health goals.

What are your top tips and/or advice for living well with a rare disease?

Prioritizing and organization are some tips for living well with a rare disease. I set reminders for medication refills and keep medications handy in different areas of the house. For example, my morning pills are where I prepare my coffee and my dinner pills are on the table. I used to make lists to prioritize however the lists started to feel overwhelming when I didn’t have the energy to complete them so instead, I made weekly goals instead of daily. Best advice I would give is to find a flexible routine that works for you. Flexible routines allow you to use them when you are also away from home. Keep a bag ready in case of emergency that includes times you take medications and where you may fill them, this will help doctors and nurses plus allow you to have control of your care even when you may feel under the weather.

What do you wish everyone knew about rare diseases?

As a patient and advocate, I wish everyone would see that we are all different. Cystic fibrosis, for example has over 1,700 CFTR mutations, this means each CF patient can experience something different. Most rare diseases aren’t textbook so when you meet someone with a rare disease don’t assume their experiences, ask questions.

Music as Medicine: The Healing Power of Music

The late neurologist, Oliver Sacks in his book “Musicophilia: Tales of Music and the Brain,” argued that music is essential to being human in ways that we’ve only begun to understand. Music stimulates the brain centers that register reward and pleasure, which is why listening to a favorite song can make you happy.  There is in fact no single musical center in the brain, but rather multiple brain networks that analyze music when it plays, thereby giving music the power to influence everything from our mood to memory.

For cancer patients, music can be a powerful therapeutic tool in coping with a cancer diagnosis and treatment.   “Music was so important to me, “says breast density and cancer patient advocate, Siobhan Feeney (@BreastDense), “because my concentration was so poor I really struggled with reading books and watching movies through chemo.  I walked a lot and plugged into lots of beautiful music along the way.”

The Evidence Base for Music Therapy

Music therapy (the clinical use of music as a tool to help achieve treatment goals) is an evidence-based practice that harnesses the power of music to improve quality of life in people dealing with illness.  References to music therapy in the clinical setting dates back to a series of letters, published in The Lancet, in 1891, which discussed the approach of a group of musicians providing live music to patients in London hospitals. [1] From that point, music therapy established itself as a recognized health profession in the clinical context.

Research findings have supported a wide range of music therapy benefits from changing brain waves to lowering heart rate and blood pressure.  While clinical trials, to date, have been small, the results are promising.   Music therapy has been shown to boost the effects of anti-nausea medications in patients receiving chemotherapy and reduce pain perception.

In a study of patients who underwent surgery for lung cancer, the patients who received music therapy before and after surgery, reported less pain and had lower blood pressure, heart rate and anxiety. In addition, the dose and frequency of pain medication given after the surgery was reduced in the group who received music therapy. [2]

In 2013, a small Turkish study of 40 people found that using music therapy and guided visual imagery greatly reduced anxiety levels for patients undergoing chemotherapy.[3] The patients also had less frequent and less severe nausea and vomiting. Similarly, a study, conducted in 2017, found that music therapy could help reduce anxiety in patients having radiotherapy simulation. [4]

The benefits of music therapy are not confined to the clinical setting.  You can tap into your own self-directed music therapy session anytime by simply listening to some favorite songs or pieces of music. If you’re looking for some inspiration, check out the following suggestions crowdsourced online.

Although I’ve categorized these music choices according to genre, take a tip from breast cancer survivor and classically trained professional harpist, Amy Camie, who challenged herself to listen consciously to her sons’ heavy metal music. In doing so, Amy discovered music “can be a profound step in the exploration of self, in the conscious act of honest reflection that goes by many names–mindfulness, meditation, self-discovery, self-empowerment, and enlightenment.” [5]

Music Playlist

Choirs

Both Blanca (@BlancaUsoz), who is caring for someone with cancer, and John (@walls2) choose a piece of music sung by their favorite choirs.  For Blanca, listening to Leioa Kantika – Nel Blu Dipinto Di Blu (D. Modugno), sung by the choir of her hometown, lifts her mood.   “Music has played a pivotal role in helping me live with a terminal diagnosis,” says John. “I’ve been privileged to have gotten to know the amazing @mountsionchoir, who sang “Don’t Give Up” by @andygrammer for me at #ChoirsForCancer. It’s now my anthem.”

Classical

Jennifer (@vitalfrequencies) opts for a classical piece from Beethoven; his opera Fidelio, or his 5th,  6th and 9th Symphonies being particular favorites.

Indie Pop

Sally (@sally_crowe) finds Christine and The Queens’ song “Tilted” to be uplifting.

Rock

While Chris (@christheeagle1), who says he “fell back in love with his music collection through cancer”, chooses “Under The Bridge” by Red Hot Chilli Peppers, Ronny (@RonnyAllan1) suggests Oasis, “Don’t Look Back In Anger”.

Both Eva (@EvaAlloza) and Teresa (@tbaupuig) recommend listening to Spanish rock band  Jarabe de Palo. Lead singer, Pau Dones, recently died from colon cancer, but his songs, say Eva, “are full of vital energy.”

Wrapping Up

Music is a universal language. It can open the doors to empathy and understanding. In the words of Camie,”In a world full of separation, anger, prejudice, fear, judgment, and pain, perhaps by expanding our familiar musical tastes we could slowly develop a listening ear for others who may not fit into our comfortable genres. Perhaps listening to music that expresses life experiences from different perspectives will naturally nurture more tolerance and empathy for our brothers and sisters around the globe.”


References

[1] Boyde C, Linden U, Boehm K, Ostermann T. The Use of Music Therapy During the Treatment of Cancer Patients: A Collection of Evidence. Glob Adv Health Med. 2012;1(5):24-29.

[2] Wang Y, Tang H, Guo Q, et al. Effects of Intravenous Patient-Controlled Sufentanil Analgesia and Music Therapy on Pain and Hemodynamics After Surgery for Lung Cancer: A Randomized Parallel Study. J Altern Complement Med. 2015;21(11):667-672.

[3] Karagozoglu S, Tekyasar F, Yilmaz FA. Effects of music therapy and guided visual imagery on chemotherapy-induced anxiety and nausea-vomiting. J Clin Nurs. 2013;22(1-2):39-50.

[4] Rossetti A, Chadha M, Torres BN, et al. The Impact of Music Therapy on Anxiety in Cancer Patients Undergoing Simulation for Radiation Therapy. Int J Radiat Oncol Biol Phys. 2017;99(1):103-110.

[5] https://upliftconnect.com/building-tolerance-and-empathy-through-music/

Comprehensive Hematological Cancer Centers

5 Technologies Shaping the Future of Healthcare

From implants to self-diagnosis, innovation is growing in the medical industry, and can soon transform healthcare all together. Although technology has already evolved since the development of the microscope back in the 17th century, the health industry is still welcoming more advances to medical and surgical tools, as well as new ways to make effective medicines and vaccines.

In this article, we’ll take a look at the five ways that technology is pushing the medical industry to another level, and shaping the future of healthcare.

1. 3D-Printed Prosthetics

“Prosthetics are one of the most requested products in the medical industry, especially with amputee patients,” says Michael Keener, a business writer at Boom Essays and Academized. “And with 3D printing, it’s now easier to create prosthetic limbs, and make these products more accessible to people worldwide. Ever since the success of the 3D-printed mini heart, now 3D printers are a must-have.” 

2. Biosensing Contact Lens

Recently introduced by UNIST’s team of researchers, biosensing contact lens will be able to detect glucose levels in diabetic patients, whenever there are tears in the eye. Having built-in transparent electronics, the lens, fortunately, won’t bother people who wear them. Sounds amazing, right?

And although the lenses aren’t in the market yet, UNIST is hopeful that they’ll soon be available in the near future. 

3. Virtual Reality (VR)

VR is no longer reserved for video games. In fact, both patients and doctors can use VR to see what’s going on – whether surgeons are using it for noninvasive procedures, or patients want a virtual escape while they’re recovering from surgery in a hospital bed. 

In addition, VR software like Osso VR and ImmersiveTouch help future surgeons train for the real deal, and lets experienced surgeons and physicians perfect their operations and methods. According to a recent study from Harvard Business Review, VR-trained surgeons did around 230% better in their overall performance – faster and more accurate in performing surgeries – than traditionally-trained surgeons.

VR also makes surgery and post-operation less painful for patients. With VR being as noninvasive as possible, patients suffering from things like gastrointestinal, cardiac, and neurological problems find them less painful when using VR to visualize soothing images and scenarios to distract them from what’s going on. Even women in labor can use VR to distract them from labor pains. With VR, the hospital experience is less stressful for patients.

4. Wearable Trackers And Sensors

With wearable trackers like Fitbit, it has never been easier for people to track their steps and heart rate. But pretty soon, these types of trackers and sensors will be able to detect one’s health status, so that people can take better control of their lives. Whether you’re looking to manage your weight, have lower stress levels, check on your body cognitively, or find a good level to be fit and active, wearable trackers and sensors will soon be able to do those things.

Here are some of the technological advances to date:

  • Fitbit Ionic – Lets you monitor your sleep, and even tracks your workout.
  • Polar H10 – Helps you find the best exercises for you, and fine-tune your current practices. (Wear this with the Fitbit Ionic, if you desire.)
  • The Muse Headband – Helps you focus on the major things that make your meditation session successful.

Now more than ever, it’s easier for people to track their health, and get a better hold of what they would need to do to stay healthy and active. 

5. Nanotech

“Nanomedicine will soon be a reality, if not now,” says Hollie Kelly, a project manager at Bestbritishessays and Academ advisor. “People are already seeing nanoparticles and nanodevices as our drug delivery systems, tiny surgeons, and cancer treatment tools.”

For example, there is already talk about smart pills like the PillCam, which is a noninvasive, electronic pill that can relay diagnostic information about the patient and or release necessary medication via smartphone. The medical industry is hoping that these smart pills can take biopsy samples for further analysis, or take the place of traditional, invasive surgeries.

Conclusion

With technology already changing our world at a rapid pace, healthcare will surely benefit from innovations from technological advances. Although these technological advances may not show up overnight, you can rest assured that doctors, physicians, surgeons, and developers are working towards these solutions, and promising a brighter future in healthcare.


Molly Crockett writes for Ukservicesreviews.com and Big Assignments. She also writes articles about writing and editing on Best Coursework Services. As a marketing writer, she shares her unique lifestyle tips and personal development advice with her audience.

A Word From the Registered Dietician & Nutritionist

How Much Protein Do I Need?

Each person’s nutrient needs are a little different, and you actually have some leeway with how much of each to have. However, when it comes to macronutrients (protein, carbs and fat), it’s not the same rule. We want to get enough, without too much. There are varying suggestions on what the correct ratio is for macronutrient intake, but they typically fall within the following range:

  • 45-65% of calories from carbs
  • 20-35% of calories from fat (I’ve seen some studies show Mediterranean diets that have up to 40%)
  • 10-35% of calories from protein

NOTE that these are not percentages of food on the plate, they are percentages of CALORIES from each food group. What makes this extra confusing is that carbs and protein are 4 calories per gram where fat is 9 calories per gram. Fat is very calorie dense, which is why you aim to eat less of it by volume, than the other sources of calories. Less is more!

Also, FYI – alcohol is 7 calories per gram. That’s still more calories per gram than carbs and protein. It can add up fast, hence the ‘beer belly’ that some people can accumulate even when it seems that they don’t “eat” that much.

Given this information, what is the optimal amount of protein that you should aim for? Consuming more protein than your body needs is not helpful. The average American eats twice as much protein as they need (they fill 1/2 their plate with meat!)

Protein Sources & Amounts

Cancer: The Scariest Ride of Them All

June is home to National Cancer Survivors Day (June 7th), a day to celebrate the journey of survivors, who are defined as “patients diagnosed with cancer.” While there are multiple resources for cancers patients, including an entire website dedicated to the National day, I thought that I would share my perspective of what it means to be a patient/survivor on an emotional/mental level:

Emotional/Mental

  • Sadness and in denial when diagnosed
  • Angry that this is happening to you specifically
  • Hopeless because of a lack of control
  • Frustration when you don’t understand your treatment plan
  • Guilt knowing other cancer patients have it worse
  • Anxiety when preparing for a scan or an appointment
  • Betrayal when you find out who your true friends and family are
  • Hope knowing you may make it out on the other side
  • Strong when you make it through the next chemo and/or radiation treatment
  • Resilient when you’re declared “in remission
  • Fear that the cancer may come back

This is only a glimpse into the many feelings felt, the life that is suddenly a roller coaster with ups and downs and hidden twists and turns. Sometimes you may not hear the whole story, the emotions guarded underneath a face that tries to “be strong” through it all. Really take a listen when you, as a caregiver, a medical professional, a friend, or a family member, ask a cancer patient, “How are you feeling?” Look at the facial expressions, the body language, and the words they’re using. To summarize: Be present.

Ending Isolation: Tips for Connecting & Resources for Support Empowered #patientchat Highlights

Last week, we hosted an Empowered #patientchat on Twitter titled Ending Isolation: Tips for Connecting & Resources for Support Empowered alongside NORD. The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Increased Engagement Across Social Economic Boundaries


Ways to Improve Patient Access


Health Literacy Matters


Full Chat


For a list of all past #patientchat topics and transcripts, click here.

Health Exercises to Tap Into Your Resiliency

The current pandemic the world is facing has caused a whirlwind of emotions, especially for immunocompromised patients, including cancer patients. Every feeling, from grief to sadness, and anger to hopelessness, has been magnified as our minds take a toll and our level of vulnerability has grown.

Right now, we are doing the best we can with the knowledge, experiences, and tools that we have. A couple of ways to utilize these tools and stay grounded during this time include meditation and exercise. Below are a list of resources, including ones I have personally used, that can be utilized to build inner and outer strength.

Walking

A great form of exercise that can be done anywhere and doesn’t require any equipment. During your walks, take in the scenery around you. Challenge yourself by quickening your pace, going up and down hills, or see how far you can go in a specific amount of time.

Yoga

Another activity that requires little to no equipment. Find free videos on YouTube or look to see if a local studio is offering online classes. Yoga allows your mind to calm and your stress hormone levels to reduce as you focus on slower movements and breath work.

Aerobics or high-intensity interval training (HIIT)

Helps improve cardiovascular health and endurance through quick movements done in rounds and can utilize the entire body. YouTube and Instagram are great places to look for these types of exercises. You can also incorporate weights (if you have them) to make it more challenging.

Strength training or weight lifting

Beneficial for both men and women, and burns more calories over time. You don’t have to be buff to lift weights or even have equipment. Buckets filled with heavy items or other things with handles, soup cans, bags of flour, a dish towel, or even body weight can be used to break a sweat. Again, YouTube and Instagram are your places for videos. Pinterest can also be helpful by searching for “body weight exercises,” or “exercises with no equipment.”

  • Mastering the form of each exercise is crucial to avoid injuries. Form > the amount of weight you can lift.
  • Do each exercise slowly. Form a mind-muscle connection.
  • Don’t forget to breathe!
  • Stretch!
  • Favorite exercises:
    • Bicep curls
    • Tricep dips
    • Bent over rows (back)
    • Rear delt flys (deltoids)
    • Upright rows (shoulders/trapezoids)
    • Squats
    • Deadlifts: Romanian, sumo, one-leg, stiff-leg (hamstrings)
    • Calf raises
    • Military press (shoulders)
    • Chest press

Meditation

Meditation is a wonderful practice that can be used to mitigate negative thoughts and distractions. This is important any time, not just during quarantine! One of the best things about meditation: you don’t have to be perfect! Meditation takes dedication and practice. YouTube has free, guided meditations that can be done in any quiet space. Some have someone spreading, while others are simply music. Apps, such as Headspace and Calm, also offer guided meditations.

Steps to Improve Patient Access to Online Services

The telehealth market is expected to experience an 80% year on year growth in 2020 as a result of the pandemic, with telehealth services easing the burden on traditional healthcare systems by urging patients with mild or moderate ailments to use web-based applications for treatment or management. Telemedicine also takes the lead in the cancer care strategy during the coronavirus outbreak and will continue to play a role in the future to support symptom management, lifestyle changes, and medication protocols. Therefore, access to online services to support patients with cancer is crucial to coordinate care from availing of financial aid and medical services to legal and psychological support. Empowering the patient to take control of their overall care using internet-based technologies can improve care coordination with medical and legal professionals and may also reduce the burden on the health care system.

Learn to Navigate the Web

Of vital importance to accessing online services is knowing how to use the internet to search for resources that you may need. In addition to the basics of having an email that you use to communicate, you must familiarize yourself with the main features of browsers such as clearing cache, bookmarking, and viewing history as well as the practicality of tabbed browsing.

Another important aspect of being internet savvy is to learn to use search engines such as Google, Bing, or Duck Duck Go effectively that will enable you to find answers to queries on all types of subjects. Know that you can also filter and refine your search to yield results that are suitable to your queries. Hence, if you are looking for lawyers that can help you find financial assistance for your cancer treatment, it will save you time since most professional websites are optimized for search engines nowadays. Professional sites do this by providing relevant and authoritative content that are useful to website visitors ranking them high whenever a query is typed in the search engine and results are displayed. Keywords that are often used by surfers are also incorporated in the text and articles of sites, making these portals easy to find by search engines.

Retrieve Information and Benefit From Online Access

Now that you are confident about using internet technology, there are many things that you can do online to assist in your cancer care management. One of the constraints in cancer care is health insurance. Access to government portals and organization websites such as the Social Security Administration (SSA) for disability insurance benefits or the Cancer Financial Assistance Coalition (CFAC) which offers a data base of financial resources can already give you leads on where to get financial aid.

Although many people are benefiting from treatment outside of hospitals due to mounting medical costs, declining number of doctors, and an older cohort of patients who are living longer, outpatient care can lead to a decrease in support delivered by health care staff. The good news is internet-based tech including patient portals, websites, and apps can tip the scale to balance the perceived support deficiency.

The ability to access health records, choose health providers and place of treatment, book and cancel appointments online, find psychological support, and order prescription refills virtually are major steps in cancer care management. Telephony is also another feature of the internet offering free phone calls if a patient needs to talk to a healthcare provider or specialist urgently. Other forms of communication with doctors and hospitals include forums such as message boards and instant messaging. Mobile applications to track and fight cancer also make it easy for patients to sign up for trials and access research results and other information on the go.

Improved access to online services by learning to navigate the web efficiently and effectively can open up an entire virtual world to a person with cancer. It also empowers a patient by managing the coordination of their condition with different actors such as oncologists, lawyers, therapists, and psychologists.

A Complete Breakdown of Telemedicine

Interview with Joe Kvedar, MD, President, American Telemedicine Association (ATA) Professor of Dermatology, Harvard Medical School Physician Scientist, Author. As the only organization completely focused on advancing telehealth, the ATA is committed to ensuring that everyone has access to safe, affordable, and appropriate care when and where they need it, enabling the system to do more good for more people.


Honora Miller:

Dr. Kvedar, thank you for joining us.

Dr. Kvedar:

I’m delighted to be with you.

Honora Miller:

Can you tell us what telemedicine is?

Dr. Kvedar:

Well, it’s not a new concept, but since the late 1960s, people have been talking and working towards this idea that care doesn’t necessarily have to be two people in the same room at the same time — that we can use technology to connect people. Like we’re doing now with this video interview, that’s the most common type of telehealth visit, but we can also connect with patients via telephone calls.

There are various remote monitoring devices that are able to monitor an individual’s vital signs or other health measures in their homes.

Finally, in the same way we exchange emails and text messages, we can do that securely with patients, what we call e-visits, which can be very helpful, as well. So there are a variety of forms, but it’s really all about care where the patient is, when the patient needs it, and not having an individual travel to visit a doctor in person.

Honora Miller:

Can you break down the differences between the terms telehealth, virtual visits, e-visits, and virtual health?

Dr. Kvedar:

I’ll go back to the beginning when there were visionary clinicians who believed medicine could be delivered this way and were doing this kind of work. They called it telemedicine. A few years into that journey, there were a number of clinicians who felt that the same technologies could be used in other ways, including education, and so they started using the term telehealth to make it broader and more inclusive. To this day, telehealth the term that everyone is mostly comfortable with.

A few years ago, some people started to say that we needed to be able distinguish between real-time and asynchronous interactions, the same way that we have video or phone calls and emails, and that we also needed to distinguish between direct-to-patient interactions and interactions between clinicians

If it is an interaction between patient and doctor, it’s a virtual visit; if it’s between clinicians, it’s a virtual consult. For example, if a physician is caring for a stroke patient in another hospital, we call that a virtual consult. An e-visit is considered an asynchronous interaction. For instance, I’m a dermatologist, so if my patient takes a picture of a rash or skin disorder, and sends it to me via a secure portal, I could respond with a message back to the patient. That would be an e-visit.

Likewise, if the primary care doctor caring for a patient decided that she wanted a picture of something looked at and sent it to me electronically, then we call that an e-consult.

Telehealth generally encompasses four areas: virtual visits, virtual consults, e-visits and e-consults. Digital Health has become a term of art because that includes everything from robotic process automation, to artificial intelligence, and so on.

Honora Miller:

What is telemedicine remote monitoring?

Dr. Kvedar:

Well, remote monitoring is best suited for certain conditions, mostly chronic illness — conditions like congestive heart failure or high blood pressure or diabetes, particularly type 2 diabetes, when it’s helpful to have more data from the patient about their condition.

For example, if you were starting out on blood pressure medication, we could give you a blood pressure cuff to take home, so that you could take your blood pressure for a week. The cuff, connected by Bluetooth, would automatically share your BP readings with your healthcare provider.

That would be an example of home-monitoring. For people with heart failure, we might give them a wireless blood pressure cuff, weight scale and a device to measure oxygen levels in the blood, so that we can remotely monitor their vital signs.

There are a variety of opportunities to monitor all types of health measures using wearable devices like an Apple Watch, and sensors, that can remotely monitor things like an EKG, sleep patterns, daily activity and other functions.

Honora Miller:

Is the monitoring done in real-time? Or do patients supply the data as it becomes available by entering it into a portal?

Dr. Kvedar:

A lot of remote monitor is done in an asynchronous way. For example, you might step on a scale every morning, take your blood pressure and heart rate, and that personal health data is securely transmitted to your healthcare provider and winds up in your electronic health record. Then a nurse or other provider could look at your data and put in a call to you if something was not quite right, and you’d have a dialogue. Again, it could be a video call or an audio call, but you’d have a dialogue with your provider about what was going on — maybe your diet was off, or maybe you need to increase your medicine dose, but that’s typically how it’s done. It’s not usually done with real-time readings.

Honora Miller:

Can you speak to what telemedicine care looks like in the era of COVID-19?

Dr. Kvedar:

I’ll start with statistics from my own large delivery system in Boston to give you a flavor, and by the way, our numbers are not unique. February of 2020, across two academic hospitals, we did about 1600 virtual encounters. In March, we did 89,000 and in April we did 242,000. We are not unique because I’ve been talking to my colleagues around the country and everyone’s having that kind of accelerated demand for telehealth services, what we would call hockey stick growth, partly because, to help stop the spread of the virus, people need to stay at home, yet we still have to take care of our patients. The technology that you and I are using for this interview is common now, whether it be Zoom or Skype or FaceTime.

People are, for the most part, comfortable with video calls, and likewise, patients have really taken to it. Patients generally have been very, very positive. Doctors are warming to it. Many doctors are saying Gosh, there’s so many things I can do this way that I hadn’t thought about, and I’m going to continue to practice this way. So telehealth services have grown a like wildfire. Before the pandemic, mental health was the biggest user and for sure now mental health providers are still the biggest users of telehealth. In mental health care, providers are talking to the patient, so it’s very easy to make that transition. And then we mentioned chronic illness before, but it turns out that the screening questions used to decide if someone needs a COVID test can easily be asked via telehealth.

if someone is sick at home with only mild symptoms, that individual can be monitored quite well using this kind of virtual care tool set because it’s all about asking questions.

Honora Miller:

So those are the main things that we’re seeing — the use of telehealth for follow-up visits for all kinds of conditions and health concerns, mental health, as well as respiratory symptom questions to determine if individuals need additional testing for coronavirus.

I’m wondering if you can speak to whether or not health insurance coverage has kept up with the pace of change in this arena?

Dr. Kvedar:

So great question and any time you ask about insurance coverage, it is always a long answer with a lot of caveats. I’ll start with Medicare, the Centers for Medicare and Medicaid Services, the biggest payer in the country for the elderly and disabled, and they said very early on they would pay for telehealth at the same level they would pay us for seeing you in the office, so that was a big boom. They’ve since refined that to pay for telephone calls at that rate, as well. That, by the way, is really a nod to addressing disparities because there are people who can’t afford a smartphone or have broadband and we want to make sure that we get to them.

I credit the Medicare folks for seeing that. Medicare is doing very well. Medicaid is state-by-state. Reimbursement will depend upon where you live. But most states, most governors, during this State of Emergency, said that they should pay and most private payers are paying for telehealth as well, so it’s pretty rosy right now, in terms of reimbursement.

One of the things that we’re doing at the ATA is trying to make sure that enough of that reimbursement culture sticks when we move out of this health crisis so that people can continue to enjoy the benefits of this type of care delivery.

Honora Miller:

Do you think that there will be legislation required in order to have that level of coverage continue or is there going to be another mechanism to advocate for that to be the case?

Dr. Kvedar:

Again, great question. I would say that if we look at history as a guide, when Medicare decides to pay for something, private payers typically follow, and there was no need for legislation because it was something that just rippled through the medical economy. So that’s what we’re hoping will happen again. In every state Medicaid is a little bit different. Patients have found that they can get care and there’s this what I call the magic of access, quality and convenience. And when you get that kind of care delivery, everyone feels great about it.

Patients have experienced that and doctors have experienced that. I would just suggest that you listeners and readers talk to their company’s human resources person, and tell them how much they’ve enjoyed their telehealth benefit; if you are insured by the government, take the time to write your senator or representative, and tell them that you don’t want to go back to in-person only care. I think we will have to advocate some but there’s such an overwhelming positive response that I’m quite optimistic that it will stick.

Honora Miller:

Having recently experienced four or five different medical professionals interacting with me through telemedicine, I’ve noticed that there’s a different cadence to each of the visits depending on the person’s communication style and their comfort level with the medium.

How patients can prepare themselves in order to get the best possible experience out of telemedicine?

Dr. Kvedar:

Sure, but before I get to that, I would just quickly say that we’re working on doctors, too, on what we’re calling “website manner.” It used to be something that we sort of said with a chuckle, but we’re very serious about it now. And it’s things like looking directly at the camera, and dressing up so that your patient takes you seriously.

But back to your question about how patients can prepare for a telehealth visit. I’d suggest everyone think about being more conscious of the information that your doctor needs to help you, either in making a diagnosis or by helping you with a care plan. For example, when we were able to have office visits back in the day — that was only several weeks ago — the doctor was asking questions, they listened to your lungs, your heart, even indicators such as your speech pattern or if you look your doctor in the eye. They were collecting information constantly during that office visit. So, let’s say, you’re a patient with diabetes. You should make sure you have your blood sugar readings handy.

Let’s say you’ve been following your blood pressure, make sure you have your blood pressure readings handy.

For me, as a dermatologist, it’s so important that we have good images of whatever it is on your skin that you need looked at. So it’s really thinking through what information your provider needs, and sometimes a doctor will help you. In our case, in advance of a telehealth interaction, we send patients information about how to take good quality pictures of their skin condition. So we’re learning, too.

Also, make sure you have your questions ready in advance, which is always good advice, both for an in-person or virtual visit, so that you get all your questions answered.

Make sure you have all the information about your condition that you can gather and make sure you have your questions prepared.

Honora Miller:

In relation to lab tests that a patient may need to get, how does that work in the telemedicine context?

Dr. Kvedar:

Well, that’s a wonderful question. Notwithstanding home pregnancy tests and the like, there are a number of companies making great strides towards taking a drop or two of blood and having a test done in the home, so we can look forward to that in the future.

In the meantime, the answer is, you need to go to a lab, hospital or clinic for testing, which is in most cases what happens currently. Things like genetic tests can be done with saliva, so some samples can be packaged from the home and shipped to a lab to be evaluated.

So it depends on the test, but unfortunately, for a lot of these tests, we still have to send people to a lab to get a blood specimen drawn or to leave a urine or stool specimen.

Honora Miller:

How can patients best identify whether their doctors provide a telemedicine option?

Dr. Kvedar:

Well, these days, I think most doctors are being very proactive, because we have this dilemma, where we want to take care of you but we’re discouraging you from coming to healthcare facilities because of the risk of contracting the virus.

If your doctor hasn’t reached out to you and you feel like you need a consultation or some care, reach out to your doctor and ask them what telehealth platform they’re using.

The government also said in the middle of March, when they relaxed the reimbursement rules, that providers could use any technology right now that we wanted during this crisis, including FaceTime, Skype, Google Hangouts, Zoom et cetera.

I’ve been telling patients, if you’re comfortable, there’s no harm in asking your doctor’s office if they will talk with you via FaceTime or another platform. I would say the first step is to ask your provider. Most people can also get access to basic telehealth services through large pharmacy chains. If you happen to have a CVS app on your phone or a Walgreens app, you can get a telehealth visit that way as well.

Most health plans, even before this health crisis, would offer an option for you to get a telehealth visit. I hope your doctor is responsive and he/she should be, but in the event that your provider isn’t offering telehealth visits, other options exist.

Honora Miller:

Can you speak to what tools a patient will need to adequately engage with patient portals?

Dr. Kvedar:

Patient portals have been around for a long time. However, I would give us a bit of a black eye on making them user-friendly. I don’t think we’ve done a very good job of that. And again, this is a patient empowerment conversation, and I don’t know that we’ve done a very good job of empowering people to interact with us through those tools.

That said, all of a sudden now patient portals have become a primary way you’re interacting with your healthcare providers, so we’re upping our game. It’s too bad it takes a crisis but there it is, and I think we’ll get much, much better.

I often say, every service you consume other than healthcare has a digital front end that has a way of interacting with software to get things done easily. For example, you take a picture of your check and deposit in your bank account with just a few taps on your smartphone. There’s millions of examples now, and health care is just getting going in that regard.

The patient portal story is really mostly about security, that is to say, it’s a very secure electronic environment for you to interact with your healthcare provider. The basic things that you can do there, apart from doing a virtual visit, is to do billing information, usually there’s a way to get a list of your medications, ask for prescription refills, schedule appointments, get letters for things like school physicals, and that the like. Nowadays, those things can be handled electronically.

There’s a little bit of, I would say, activation energy for some people, because signing up can be complicated.

It is so secure you are sometimes required to submit a letter or do something extra than you would to sign up for a normal website, all in good intent. I would urge people to put up with whatever barrier hits you in the beginning. Once you get involved with a patient portal, and we’re working very hard now to make it a really a good experience for you, patients will be able to not only interact with us as providers, but you will be able to access all kinds of information and services offered by your healthcare system, access lots of information from your record and so forth.

Honora Miller:

As a cancer patient, and for others living with chronic conditions, how might telemedicine impact the future of survivorship?

Dr. Kvedar:

It’s a great question. One aspect of survivorship is things like living wills which, if it isn’t done electronically, we will have to move in that direction, to enable that. There is a lot of interest in interactivity with palliative care and hospice around how to better care for patients, particularly around medication management. Patients can be afraid of opiates and sometimes they’re in terrible pain, so we need to get this right. So those are a couple of examples.

Honora Miller:

Is a potential for telemedicine to be used in lieu of in-person visits to such an extent that the medical provider doesn’t get to see the patient enough to pick up on subtleties that are crucial? Can you share any insights about this concern?

Dr. Kvedar:

I think that’s wonderful insight and we are definitely grappling with that for sure, especially now that telehealth use has surged. Before this pandemic hit, we had only one channel healthcare delivery to come to the hospital or doctor’s office. Now of course the answer is, let’s do a telehealth visit.

But the truth is somewhere in the middle, and I trust clinicians to have good instincts about that.

For instance, patients that we’re treating for a chronic illness, maybe we do every other visit in the office so that we can have that face time and actual interactivity. There’s something about in-person interactions with patients that’s very special. I take care of patients with acne, for example, and arguably that can be done online. But I would say we’ll probably end up doing every other visit in the office, because you want to get to know the patient, their family, etcetera. It’s just that right now where we don’t really have a choice.

Honora Miller:

Can you speak to privacy concerns around telemedicine?

Dr. Kvedar:

Forty-eight states have temporarily loosened their licensure restrictions in response to the pandemic. As, a patient, that may or may not hit your radar, depending upon where you live. Here in Eastern Massachusetts, I have a medical license in Massachusetts, but regularly take care of patients who live in New Hampshire and Rhode Island, because they often had come in for office visits. So now if we’re doing follow-up care, there’s a mechanism where I can still take care of them, even though I don’t have a medical license in those two other states.

Waiving restrictions on state licensure is important to point out because it’s really enabling us to again deliver better care to more people. The question then becomes, after this crisis is over, will we have to go back to the very old-fashioned, state-by-state geographic border-based care delivery model? This is something that the ATA is working on, as well as the need to maintain patient privacy, especially for providers using telehealth for the first time, who may not be familiar with these new procedures.

I would also point out that the biggest part of health data security is how we record that visit in the medical record, and that hasn’t changed. We do that in a very secure way. It’s something we take very seriously. And I don’t mean to say that you’d never get hacked. It’s part of reality that anyone can get hacked any time, but I don’t believe it’s something that should get in the way of delivering care.

Honora Miller:

Thank you, these are interesting times and we are moving at an amazing speed, and just the incredible growth that you described it really is a testament to how there can be interesting unintended consequences of a pandemic. Thank you very much for joining us and for you sharing your expertise.

Dr. Kvedar:

It’s been a real honor and pleasure.

Care Partner’s Checklist During a Crisis


 

PEN’s Care Partner Network Manager, Sherea Cary, shares her tips for care partners during a crisis:

 

Patient Access: Let’s Talk Health Care Technology #patientchat Highlights

Last week, we hosted an Empowered #patientchat on Twitter titled Patient Access: Let’s Talk Health Care Technology. The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Increased Engagement Across Social Economic Boundaries


Ways to Improve Patient Access


Health Literacy Matters


Full Chat


 

Cancer Patient and Care Partner Tips for Keeping Busy During A Pandemic

Cancer Patient and Care Partner Tips for Keeping Busy During Pandemic from Patient Empowerment Network on Vimeo.

MPN managers Summer and Jeff share tips for keeping busy during a crisis. They both share how exercise, scrapbooking, and zoom improvisational theater has kept them occupied.

Summer, who lives with myelofibrosis, shares her experience with getting her regular blood draw and some of the new procedures in place allowing her visit to be smooth.

How are you keeping busy? Let Summer and Jeff know: question@powerfulpatients.org

How to Make the Most of a Virtual Visit

“Well, we need to check your titer,” the doctor explained as he went over my lab results via a recent Zoom call. “Titer?” I thought. I know I’ve heard that term before, but I wasn’t really sure what it meant. The doctor reappeared the word a few more times, exacerbating my confusion. I was too embarrassed to ask what he meant; he was talking quickly. When he eventually said, “The titer is the strength of the antibodies in your blood,” I finally understood and felt more at ease.

As we face this pandemic, chronic and/or rare disease patients like myself are facing an extension of the “new normal” that everyone is experiencing firsthand. Our doctor’s appointments are critical times when we’re able to explain how we’re feeling, how our medication may or may not be working, and what the next steps are. But our visits become different when our face to face sessions turn virtual. I believe we become more vulnerable, as we invite the doctors into our home lives.

While healthcare has certainly come a long way and telemedicine has been on the horizon, virtual visits are now the norm. We have been placed, both as patient and healthcare professionals, in a position that allows us to take advantage of the technology we have and still provide and receive great care. In my opinion, these visits should not be considered a hassle, but rather an encounter that continues to focus on patient education as we face unprecedented times.

A part of patient education is health literacy. Health literacy can be defined in many ways, but the short, paraphrased version is that health literacy is the ability of patients to understand health information (verbal, visual, etc.) in order to make the best decisions about their health. This includes understanding the messages that are being conveyed to them by health professionals, including symptoms to look for and how to take medication. The case remains the same whether visits are in-person or virtual, perhaps with greater emphasis on the latter, in my opinion.

Below, I will highlight things that patients can do to make the most of their health appointment, with a focus on health literacy.

Tips for Patients

  1. Discuss any information you have questions about during your appointment, especially if it has jargon you don’t understand
  2. If a doctor speaks too quickly, tell them to slow down or repeat what they said
  3. Take notes during your appointment if having something visual helps you remember
  4. If your doctor mentions a word you’ve never heard of, ask them to define it
  5. Share your understanding of how a certain medication or treatment is helping you and/or if you think something could work better
  6. If you’re unsure of how to take a medication, show the label to your doctor to have them explain
  7. If you are provided with test results, ask your doctor to review them carefully with clear language