PEN-Powered Activity Guide III

PATIENT EMPOWERMENT NETWORK

PEN- POWERED ACTIVITY GUIDE

UTILIZING TELEMEDICINE TOOLS AND STAYING CONNECTED JUNE 2020

VOLUME III

This program is made possible with the support of AbbVie Inc. and generous donations from people like you!

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04 05 03

ACKNOWLEDGMENT AND EMPATHY

FOREWARD

STAY CONNECTED COMPLETE BREAKDOWN OF TELEMEDICINE

06

TELEMEDICINE & SECOND OPINION OPTIONS 19 YOUR TELEMEDICINE VISIT: KEY STEPS FOR SUCCESS 20 MAKING THE MOST OF YOUR TELEMEDICINE VISIT 21 COMMUNITY MATTERS: TIPS FOR STAYING INVOLVED 22 24 RESOURCES HEALTH EXERCISES 25 FINANCIAL RESOURCES FOR PATIENTS & FAMILIES 26 DISCOVER YOUR HISTORY AND LEAVE A LEGACY 27 CARE PARTNER'S CHECKLIST DURING A CRISIS 28

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29 EATING WELL WORD FROM A REGISTERED DIETICIAN & NUTRITIONIST 30

MEAL PLANNING TIPS FOR THE FAMILY

32

MEDITERRANEAN TUNA SALAD

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GARLIC CHIVES MASHED POTATOES

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DINING WITH DANNY

35 38

RELAX & HAVE FUN WORD JUMBLE

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EMPOWERED PLAYLIST & BLOG

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HOW TO WRITE STAND-UP COMEDY

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COLORING PAGES

42

PEN BOOK CLUB

44

CLOTHESPIN PAINTBRUSHER

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Team PEN recognizes the current climate of the world and invites you to join us in empowering yourself, your families and your communities through this third volume of our PEN-Powered Activity Guide. This guide represents an authentic expression of our dedication to patients and families facing health inequities, health disparities, racial injustices, gender inequalities and other injustices. Let’s stand together, for one another. We are all in this together. Diversity, equity, equality and inclusion is a journey, more than a destination. Our team has compiled resources for combating racism to learn more and fight implicit bias impeding the advancement of progress. Below are many helpful resources. Resources to Fight Racism & Unconscious Bias FOR EVERYONE: Anti-Racism Project Jenna Arnold’s resources (books and people to follow) Rachel Ricketts’ anti-racism resources Showing Up For Racial Justice’s educational toolkits “Why is this happening?” — an introduction to police brutality from 100 Year Hoodie Zinn Education Project’s teaching materials

FOR PARENTS:

Coretta Scott King Book Award Winners: books for children and young adults 31 Children's books to support conversations on race, racism and resistance Books:

Parenting Forward podcast episode ‘Five Pandemic Parenting Lessons with Cindy Wang Brandt’ Fare of the Free Child podcast Integrated Schools podcast episode “Raising White Kids with Jennifer Harvey” Podcasts: PBS’s Teaching Your Child About Black History Month Your Kids Aren't Too Young to Talk About Race: Resource Roundup from Pretty Good Articles:·

The Conscious Kid: follow them on Instagram and consider signing up for their Patreon

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PATIENT EMPOWERMENT NETWORK

Foreward As Myeloma Network Manager for Patient Empowerment Network (PEN), it is my pleasure to write the foreword for this 3rd volume of the PEN-Powered Activity Guide. This month’s guide focuses on Utilizing Telemedicine Tools to Stay Connected. This alternative way to provide care and connect with the patient has expanded rapidly during the COVID-19 pandemic, and is likely to continue to grow in popularity moving forward. I was fortunate to be able to discuss and demystify this new paradigm of patient care during an informative interview I had recently with Dr. Joe Kvedar, President of the American Telemedicine Association (ATA). As Dr. Kvedar and I discuss, some of the benefits of telemedicine are that it makes it easier for patients with chronic illnesses to access healthcare providers without leaving their home, or when traveling some distance to a medical appointment may present a challenge. As a Myeloma patient, I have found that my telemedicine appointments have enabled me to save my (limited) energy and time, and that interacting with my doctors via secure video through a patient portal or by telephone has been very convenient. As with all appointments, I have gotten more out of the telemedicine visit when I prepared ahead by making a list of questions, concerns and topics that I wished to discuss and used that as a guide to ensure that the session addressed everything that was important to me. It has also been easier for me to take notes while on the video session, which is sometimes logistically harder in person. Medicare and my secondary private insurance have covered these sessions seamlessly. Check out my conversation with Dr. Kvedar starting on page 5 of this issue.

It is my hope that this activity guide will provide relevant information and useful activities for patients who live with chronic disease, including their caregivers, and families.

Honora Miller, MSW (MSS, MLSP) Myeloma Network Manager Myeloma Warrior since 2015

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STAY CONNECTED

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A Complete Breakdown of Telemedicine

President, American Telemedicine Association (ATA) Professor of Dermatology, Harvard Medical School Physician Scientist, Author

Joe Kvedar, MD

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.

Dr. Kvedar, thank you for joining us.

Honora Miller:

I’m delighted to be with you.

Dr. Kvedar:

Can you tell us what telemedicine is?

Honora Miller:

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.

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Dr. Kvedar:

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

Honora Miller:

Dr. Kvedar:

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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.

What is telemedicine remote monitoring?

Honora Miller:

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.

Dr. Kvedar:

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?

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

Honora Miller:

Dr. Kvedar:

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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.

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. wondering if you can speak to whether or not health insurance cov Honora Miller: 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.

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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. Do you think 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? 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.

Honora Miller:

Dr. Kvedar:

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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. 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.

Honora Miller:

How can patients 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.

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

Honora Miller:

Dr. Kvedar:

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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.

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

Honora Miller:

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.

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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.

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

Honora Miller:

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.

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

Dr. Kvedar:

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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? 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.

Dr. Kvedar:

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.

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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. Thank you. These are interesting times and we are moving at an amazing speed. The incredible growth in the use of telemedicine that you have described is a testament to how there can be beneficial and unintended consequences of a pandemic. Thank you very much for joining us and for sharing your expertise.

Honora Miller:

Dr. Kvedar:

It's been a real honor and pleasure.

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Telemedicine & Second Opinion Options

When making choices for your treatment plan, you should fully informed, comfortable, and in agreement with how you want to proceed. If time permits, consider getting a second opinion (and perhaps a third) if you are not crystal clear on what you want to do. More and more institutions are implementing telemedicine into their offerings. A telemedicine consult can give you and your care team access to some of the best experts to get input on your care plan, regardless of location. In the past it was often cost prohibitive or impractical to travel to these centers. To get started, discuss your desire for a second opinion with your oncologist. They should welcome the additional expert insight into your condition, can often help facilitate an introduction and get the necessary records, test results, and biopsy slides sent to the expert. Sometimes you have to request the records or slides yourself, so be prepared to do a little work. Getting additional opinions on your treatment options should give you confidence to make the best choice for you. Below is a list of some of the National Comprehensive Cancer Network centers Member Institutions that offer telemedicine resources.

Abramson Cancer Center Penn Medicine

City of Hope National Medical Center (888) 319-6267 Duarte, CA

Fox Chase Cancer Center (888) 369-2427 Philadelphia, PA Stanford Cancer Institute (650) 498-9000 Stanford, CA

Huntsman Cancer Institute (801) 585-3090 Salt Lake City, UT

Fred Hutchinson Cancer Research Center (206) 667-4415 Seattle, WA

(215) 316-5145 Philadelphia, PA

Moffitt Cancer Center 1-888-663-3488 Tampa, FL

Roswell Park Cancer Center 1-800-767-9355 Buffalo, NY

James Comprehensive Cancer Center: OSU

Memorial Sloan Kettering Cancer Center

1-800-293-5066 Columbus, OH

(212)639-2000 New York, NY

O'Neal Comprehensive Cancer Center | UAB

University of Colorado Cancer Center (720) 848-9264 Aurora, CO

UC San Diego Moores Cancer Center (800) 926-8273 San Diego, CA

UCSF Health (888) 689-8273 San Francisco, CA

University of Chicago Medicine (773) 702-1000 Chicago, IL

800-UAB-8816 Birmingham, AL

University of Wisconsin Carbone Cancer Center (608) 720-6111 Madison, WI

Vanderbilt-Ingram Cancer Center (615) 322-5000 Nashville, TN

Yale Cancer Center (203) 785- 2140 New Haven, CT

UCLA Johnson Comprehensive Cancer Center (310) 825-5111 Los Angeles, CA

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Your Telemedicine Visit Key Steps For Success The idea of telemedicine may seem a bit daunting, so here’s what you need to know to help you have a smooth, effective experience.

VISIT THE PATIENT PORTAL

Obtain your login information from your provider’s office. Login and familiarize yourself with the functionality. This is where you will find the technology for your virtual visit.

DOWNLOAD THE APP

If available, download the app that corresponds with your patient portal. This may be an easier-to-use option as it removes the nuances of compatibility with various browsers.

REVIEW INSTRUCTIONS

Take the time to review the instructions In advance of your appointment so you can troubleshoot any issues if necessary.

SIGN CONSENT

You will be asked to electronically sign and consent for the virtual appointment.

HAVE PATIENCE As with any video chat technology, there is inevitably an issue early on either with sound or video. Be patient and flexible with your provider and yourself as you try to connect.

Compiled by Health Content Collective

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PATIENT EMPOWERMENT NETWORK

As we face this pandemic, patients like myself are facing an extension of the “new normal” and that includes virtual visits. Both patient and healthcare professionals are now in a position that allows us to take advantage of the technology we have and still provide and receive great care. A part of patient education is health literacy. Health literacy is the ability of patients to understand health information in order to make the best decisions about their health. The case remains the same whether visits are in-person or virtual. How to Make the Most of a Virtual Visit

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

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MD and Patient Authored Tips for Staying Involved The Virtual Empowered #PatientChat is a 45 minute multi-platform support group style moderated chat, that includes a “venting session” and concludes with a solution-based empowerment session. Join #patientchat bi-weekly on Friday's @ 1pm ET. View program highlights. Empowered #patientchat

Panel

Honora Miller @HonoraMiller

Melvin Mann @MelMann

Alexa Jett @ohiialexa

Dr. Nicole Rochester @yourgpsdoc

"This [COVID-19] pandemic has taught people that community means thinking about everyone , not just how our actions affect ourselves."

Top Tips & Tools

Cope through strong community Form new bonds; connect with friends Find creative ways to stay connected Stay focused: it's a marathon not a sprint

Don't just zoom. Try online games with your loved ones! Schedule virtual coffee or tea Join a wellness challenge Take care of yourself

Top Quotes "Be kind to yourself. Extend compassion to others. Find an emotional accountability partner. Write down a list of loved ones whenever you think of them so you remind yourself to check in later." Honora

“I have always felt that we have under-utilized telemedicine. There is so much that can be done via a telemedicine visit.” Dr. Rochester

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PATIENT EMPOWERMENT NETWORK

“One of the best things I’ve seen from telemedicine is for a lot of people with physical ability issues or anything like that, or a really bad migraine or if you have a chronic illness that fluctuates every day. What if you make an appointment in December and it comes up a couple months later and you don’t feel good that day. You can still have the access to your provider and talk through any concerns or even potentially get help for a flare or things like that.”

Alexa

"I was experiencing some symptoms of COVID and I made an appointment with my PCP. We went over the symptoms and I tested negative for the antibodies, but I didn’t have to go in at the time when it was crowded." Mel

A T I M E L E S S C A L L T O A C T I ON

“Reach out to others. You can physically distance without socially distancing. Pick up the phone, call someone, do a zoom call or FaceTime or Skype, but don’t let these trying times prevent you from staying connected with your community and even from creating a brand new community.”

Dr. Rochester

Chat Highlights

What's your go-to attire for online meetings?

PJ’s ALL DAY EVERY DAY PJ'S ALL DAY EVERY DAY

PJ’s on bottom, business on top PJ's on bottom, business on top

All business All business

Can't disclose Can't disclose

0 10 20 30 40 50

Video Chat Style Poll

"Zoom mullet"!

1,698,291 impressions

Compiled by Diverse Health Hub

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RESOURCES

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PATIENT EMPOWERMENT NETWORK

Health Exercises to Tap Into Your Resiliency

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

STRENGTH TRAINING OR WEIGHT LIFTING

Beneficial for men and women, and burns more calories over time. You don’t have to be buff or even have equipment. Buckets filled with heavy items or other things with handles, soup cans, bags of flour, a dish towel, or body weight can be used to break a sweat. Check out YouTube, Instagram, or Pinterest.

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.

QUICK TIPS:

FAVORITE EXERCISES:

Mastering the form of each exercise is crucial to avoid injuries. Form > the amount of weight Do each exercise slowly. Form a mind- muscle connection. Don’t forget to breathe! Stretch! 1. a. 2. 3. 4.

Bicep curls Tricep dips

Bent over rows (back) Rear delt flys (deltoids)

For more mindfulness resources and apps, head over to pages 19 & 20 in our PEN-Powered Activity Guide II

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PATIENT EMPOWERMENT NETWORK

Financial Resources for Patients and Families

The financial impact of the COVID-19 crisis is impacting millions of Americans. Patients might find themselves facing unique financial challenges as they manage both the impact on the economy as well as treatments. Below are some organizations currently providing financial assistance and relief for patients, survivors and families. Support may include: cancer financial grants, transportation assistance, emergency food assistance, utility assistance, prescription assistance and gift certificates.

Angel Flight (800) 549-9980

American Cancer Society (800) 227-2345

Dream Foundation (805) 564-2131 (888) 437-3267

Cancer Financial Assistance Coalition (866) THE-CLRC

Cancer Care, Inc. (800) 813-4673

NeedyMeds (800) 503-6897

National Patient Travel Center (800) 296-1217

Patient Access Network Foundations (866) 316-7263

Patient Services Incorporated (800) 366-7741

Family Reach COVID-19 Emergency Fund (973) 394-1411

Lazarex Foundation (925) 820-4517

Cancer Care Copay (866) 552-6729

The Leukemia & Lymphoma Society (877) 557-7672

National Organization for Rare Disorders (NORD) (800) 999-6673

Healthwell Foundation's COVID-19 Fund 1-800-675-8416

Patient Advocate Foundation and Team Rubicon COVID-19 Emergency Food Assistance Program (310) 640-8787

Samfund COVID-19 Emergency Fund (617) 938-3484

Patient Advocate Foundation COVID Care (866) 316-7263

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PATIENT EMPOWERMENT NETWORK

Discover your History and Leave a Legacy Getting Started

Gerri Smoluk, PhD, AML Network Manager

Consider getting a DNA test to find relatives who may be able to help you in your search. Ancestry.com, 23andMe.com, and MyHeritage.com are several sites that provide DNA testing. Your results will include a list of DNA relatives who are in their database and access to available geneaology information. You can also upload your results to other sites such as GEDmatch to find even more relatives. At times it can feel like you are a detective searching for clues. Review all documents you find and keep copies. New clues can show up in unexpected places. Many records have now been digitized and are available online. Documenting your family history is a great way to leave a legacy & even discover “new” relatives. Using the internet, searching for your family history has never been easier. Start by collecting as much information as you can from family members including relative’s names, places (be as specific as possible), and photos. Create a family tree and search databases for clues. There are many online tutorials and genealogy websites to help you get started. Ancestry.com, Geni.com, Familysearch.org, and Myhertiage.com are just a few. Many have a free trial period. Social media sites such as Facebook have many groups focused on genealogy searching. Find one that relates to your background/ethnicity to find more clues. There are many online videos to aid in your search (e.g., YouTube). The Brigham Young University (BYU) Family History Library (https://fh.lib.byu.edu/) has many online resources and tutorials.

As you learn more you may want to hire a professional genealogist to aid in your search especially in foreign countries where language may be a barrier.

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PATIENT EMPOWERMENT NETWORK

Care Partner's Checklist During a Crisis Sherea Cary, Care Partner Network Manager

Assess immediate needs of patient and caregiver. Make a plan. Gather meds, doctor info and supplies. Don’t forget favorite books and snacks. Seek help early. Let others help with dinner and errands. Remember to thank helpers. A sincere “thank you” is appreciated and priceless. Empower patients to help, if able. Patients want to participate and be involved in their care. One less item on the care partner’s list. Schedule time for yourself. Self-care is essential. Start with 15 minutes of quiet time or whatever is relaxing to you. It is obvious when a caregiver is overwhelmed.

Repeat steps above until crisis is over.

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PATIENT EMPOWERMENT NETWORK

EATING WELL

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PATIENT EMPOWERMENT NETWORK

Word From a Registered Dietician & Nutritionist Julie Lanford, MPH, RD, CSO, LDN Founder, Cancerdietitian.com Registered Dietitian Licensed Nutritionist Board-Certified Specialist in Oncology Nutrition

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:

NOTE: These are not percentages of food on the plate, they are percentages of CALORIES from each food group. Carbs and protein are 4 cal/g where fat is 9 cal/g. Fat is very calorie dense, which is why you aim to eat less of it by volume, than the other sources of calories.

45 - 65% of calories from carbs

20 - 35% of calories from fat

10 - 35% of calories from protein

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PATIENT EMPOWERMENT NETWORK

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!)

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.

Protein Sources & Amounts

PLANT-BASED

ANIMAL-BASED

¾ cup tofu................................. ½ cup cooked soybeans.............. ½ cup cooked lentils...................... 2 tbsp. peanut butter...................... ½ cup cooked beans..................... 1 oz. nuts...................................... ¼ cup hummus............................. 2 tbsp. seeds................................. 1/2 cup cooked quinoa.................. 1 cup almond milk......................... 9g 7g 7g 6g 5g 4g 4g 1g 19g 15g

3 oz. chicken................................ 3 oz. pork..................................... 3 oz. beef..................................... 3 oz. shrimp................................. 1 cup Greek yogurt....................... 3 oz. salmon................................. 1 cup milk....................................... 1 egg.............................................. 1 oz. cheese................................... 23g 22g 21g 19g 19g 17g 8g 7g 7g

GOAL: 6-10 grams with snacks 15-20 grams with meals

1oz. serving of nuts

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PATIENT EMPOWERMENT NETWORK

Meal Planning Tips for the Family

Make a menu!

Plan your meals around foods that are on sale

Plan at least one meatless meal a week

Check your pantry, refrigerator and freezer

Enjoy grains more often

Avoid recipes that need imported ingredients

Look for seasonal recipes

Plan to use left overs

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PATIENT EMPOWERMENT NETWORK

Mediterranean Tuna Salad

Ingredients

• 1 can reduced sodium tuna in water, drained • 1 can white beans, drained and rinsed

• 1 tablespoon capers • ¼ cup kalamata olives • 1 tablespoon olive oil • ½ tablespoon red wine vinegar • 1 teaspoon oregano • Salt and pepper

Instructions

1. In a bowl, whisk together olive oil, vinegar, oregano, salt and pepper. 2. Add tuna, beans, olives, and capers. Stir to combine. 3. Eat alone or serve over greens.

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PATIENT EMPOWERMENT NETWORK

Garlic Chives Mashed Potatoes

Leave skin on for extra nutrition!

Ingredients 8-10 potatoes (Russet – or equivalent volume of red, leave skin on if possible!) 8 oz reduced fat or Greek cream cheese (use Greek for twice the protein) 1 cup fat free sour cream 5 garlic cloves (or more, if desired!) Chives Salt, pepper

Instructions

Scrub, wash and boil the potatoes. Or slice them and cook in a pressure cooker for 10 minutes. Mash them along with all other ingredients, adding skim milk if needed to make creamier. Place all ingredients in a 2 qt. casserole dish and bake at 350 degrees for 30 minutes. 1. 2. 3.

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PATIENT EMPOWERMENT NETWORK

Dining with Danny Danny Parker is a research scientist, lifestyle columnist, and myeloma survivor. He seeks to find ways to help himself and others live a happy and productive life - one of which is cooking.

3 tablespoons olive oil 4 garlic cloves 2 whole boiled potatoes (halved) Cuban Fish in Green Sauce Ingredients Salt to taste 3 liberal tablespoons minced parsley ⅓ cup dry white wine 1 cup fish broth (boil and strain bones) 2 tablespoons flour 2 lb. fish fillets

Instructions

1.

Sauté fish in oil and garlic very quickly being careful not to overcook. Remove fish. Stir in flour and add parsley, wine, salt and broth. Add potatoes. Return fish. Cook briefly over medium heat, just until done. Taste for seasoning and serve piping hot.

2.

3.

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Calle Ocho! Just north of Havana way

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PATIENT EMPOWERMENT NETWORK

Huevos a la Flemenca

Ingredients

The Sofrito:

Pre-heat the oven to 400 F. If using fresh tomatoes, they should be skinned by dropping them into boiling water for ten seconds, removing into cold water and then peeling, de-stemming and chopping. Canned tomatoes can be added straight away. Heat a heavy 12-inch skillet with oil until a light haze forms above it. Add onions, garlic and green pepper and cook for 5 mins. until soft. Add ham, sausage etc. and cook for 3 mins. more before adding the tomatoes and all other ingredients. Cook briskly until much of the liquid in the pan evaporates. Reduce the quantity of tomato down to a moderately thick sauce. Remove from heat, discard the bay leaf. Rub the casserole with a film of olive oil and then even spread the sofrito over the bottom of the casserole. One at a time break eggs on top of the sauce whole, spreading them around the casserole. Heap the peas in 3-4 mounds around the eggs, arrange the asparagus in parallel rows and then drape the pimento decoratively over them. Sprinkle the top with the sherry. Place the entire dish in the middle of the oven for about 20 minutes. When done the whites should be firm and an opaque film will have formed over the egg yolks. Absolutely delicious served straight from the oven with fresh crusty bread and a salad dressed as the Spanish do. Add your washed salad ingredients: bibb lettuce, tomato, onion, etc. Top with a tin of tuna and dress it with firstly with salt, second with vinegar and lastly with an extra virgin olive oil. Toss and serve. 2 tsp olive oil 6-8 eggs to loosely cover the sofrito 1 cup fresh or thawed fr ze peas 6 asparagus tips (3-4 inches long)8 strips of drained, canned pimiento, each about 3" long and 1/4" wide 3 tbsps. pale dry sherry The Eggs and Toppings:

1. 2.

2 medium sized tomatoes ¾ cup of chopped & drained canned tomatoes

¼ cup Spanish extra virgin olive oil 1 large onion, skinned and chopped 2-3 garlic cloves, skinned and crushed 1 chorizo sausage, skinned and crushed ¼ lbs. serrano ham, or prawns chopped 1 large green pepper, cored and then chopped 1 tbsp finely chopped parsley 1 bay leaf ⅓ cup water Salt, pepper, paprika

3.

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5.

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7. 8.

Instructions Pre-heat the oven to 400 F.

1. 2.

9.

If using fresh tomatoes, they should be skinned by dropping them into boiling water for ten seconds, removing into cold water and then peeling, de-stemming and chopping. Canned tomatoes can be added straight away. Heat a heavy 12-inch skillet with oil until a light haze forms above it. Add onions, garlic and green pepper and cook for 5 mins. until soft. Add ham, sausage etc. and cook for 3 mins. more before adding the tomatoes and all other ingredients. Cook briskly until much of the liquid in the pan evaporates. Reduce the quantity of tomato down to a moderately thick sauce. Remove from heat, discard the bay leaf. Rub the casserole with a film of olive oil and then even spread the sofrito over the bottom of the casserole.

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7. 8.

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PATIENT EMPOWERMENT NETWORK

Curried Peanut & Tomato Soup Ingredients

2 large sweet onions, coarsely chopped (1 cup) 1/2 teaspoon sea salt 1/4 teaspoon black pepper, coarsely ground 4 tablespoons olive oil 2 tablespoons curry powder

1 (28-oz) can diced tomatoes. 3 cups chicken broth or vegetable stock 1 cup hot water 3/4 cup smooth unsweetened peanut butter 4 tablespoons chopped fresh cilantro Plain yogurt for garnish

Instructions Sauté onion, salt, and pepper in oil in a 3-quart heavy saucepan over medium heat, stirring occasionally, until softened, 5 minutes or so. Add curry powder, stirring frequently, 2 minutes more. Add tomatoes (with their juice) and broth and simmer, uncovered, 5 minutes. In a large bowl, stir hot water into peanut butter and whisk until smooth and add to soup. Simmer, uncovered, stirring occasionally, ten minutes. Preferably, use an immersion blender to blend the soup in the pot. If not, then carefully transfer the hot liquid to a blender to blend before returning to the pot to keep it warm. Taste for salt and spice. Add a little cayenne if too mild. 1. 2. 3. 4. 5.

Is the weather cold? Heat the soup bowls before ladling soup into each. Add a generous dollop of yogurt to the center of each, followed by a tablespoon of chopped cilantro scattered over the top of each bowl. Feast for the eyes. Serve steaming. Makes 4 large servings.

6.

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