PEN-Powered Activity Guide III

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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PATIENT EMPOWERMENT NETWORK

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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PATIENT EMPOWERMENT NETWORK

29 EATING WELL WORD FROM A REGISTERED DIETICIAN & NUTRITIONIST 30

MEAL PLANNING TIPS FOR THE FAMILY

32

MEDITERRANEAN TUNA SALAD

33

GARLIC CHIVES MASHED POTATOES

34

DINING WITH DANNY

35 38

RELAX & HAVE FUN WORD JUMBLE

39

EMPOWERED PLAYLIST & BLOG

40

HOW TO WRITE STAND-UP COMEDY

41

COLORING PAGES

42

PEN BOOK CLUB

44

CLOTHESPIN PAINTBRUSHER

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PATIENT EMPOWERMENT NETWORK

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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PATIENT EMPOWERMENT NETWORK

STAY CONNECTED

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PATIENT EMPOWERMENT NETWORK

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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PATIENT EMPOWERMENT NETWORK

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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PATIENT EMPOWERMENT NETWORK

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 >Page 1 Page 2 Page 3 Page 4 Page 5 Page 6 Page 7 Page 8 Page 9 Page 10 Page 11 Page 12 Page 13 Page 14 Page 15 Page 16 Page 17 Page 18 Page 19 Page 20 Page 21 Page 22 Page 23 Page 24 Page 25 Page 26 Page 27 Page 28 Page 29 Page 30 Page 31 Page 32 Page 33 Page 34 Page 35 Page 36 Page 37 Page 38 Page 39 Page 40 Page 41 Page 42 Page 43 Page 44 Page 45 Page 46 Page 47 Page 48

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