2018 Annual Report

2018 ARNEPNO URATL

Be Empowered.

Contents 0 4 Letter from Board Chair 0 5 Mission 0 6 Program Highlights 1 4 Fundraising 1 5 Capacity 1 6 Finances 1 7 Future

Dear friends, Scott riccio Board Chair First, thank you. Thank you for your support and collaboration, for your understanding and compassion. You energize us with your passion and we were delighted to connect with each and every one of you in 2018. As we begin 2019, I want to call attention to a few of the important, strategic themes we focused on in 2018: health literacy as a foundational element of true shared-decision making; diversity of experience, background, and opportunities; and understanding and focusing on who and what we are (and are not). The remainder of the Annual Report will shed more light on the details of the programs and tactics PEN employed to further our mission. As a board, we were thrilled to be able to transition the Executive Director role from Joan Justice to Andrea Conners, and add Joan to our board at the same time. Joan’s leadership in the early, formative years of PEN was truly a labor of love and the foundations she put in place have served wonderfully as the bedrock upon which we will build PEN in years to come. Andrea’s energy, knowledge, and ability to find solutions amidst the chaos of building out a small non-profit has been nothing short of inspiring. Delivering high- impact in all we do means that PEN continues to be the place for patients and care partners to come for more engaging content and programs focused on empowering patients. We are both grateful and proud that through the energy of these two powerful women and advocates, we were able to add important diversity of background and experience to PEN’s board in 2018. In addition to Joan, we welcomed Darla Brown to the board in the Spring and then Sajjad Iqbal, LaWanda Courtney and Nancy Gatschet in the Fall. Each of their stories is powerful and inspiring, so be sure to check the PEN board page. We also thanked Nick Allen and Francis La Poll for their years of service to PEN’s board as they moved on to new adventures. Our board was active in the community as well, with Jack Aiello regularly speaking at advocate-focused events and Randy Broad being invited to share his story and participate in the invitation-only Biden Cancer Summit in Washington, D.C. In early 2019, we look forward to some intensive work to finalize a new Strategic Plan to help better answer the questions of “who are we and who aren’t we” to ensure we remain appropriately focused on the places and people where PEN can add the most value. We remain a very small organization, with Andrea and Kara Rayburn, our amazing and inspiring do-it-all Director of Digital Communications and Engagement, as our only full-time staff, so helping define who we aren’t is a critical part of delivering high quality programs. Thank you to everyone who helped play a role in empowering patients in 2018. We appreciate you and look forward to working with you to make 2019 an even better year for as many patients as we can. With gratitude, Scott

Our MISSION Patient Empowerment Network's mission is to fortify cancer patients and care partners with knowledge and tools to boost their confidence, put them in control of their healthcare journey, and assist them with receiving the best, most-personalized care available. Our programs focus on enhancing health literacy to enable shared decision-making and providing information and educational resources to help patients consider clinical trials as an option throughout treatment.

Our programs Educated 50,000+ patients and care partners

Enhance patient health literacy Enable shared decision-making Demystify clinical trials

2018 programs \"This was one of the best overall summaries of treatments, dealing with the disease emotionally and medically that I have ever viewed.\" Lung cancer Myeloma CLL Prostate cancer ASCO Coverage Patient Café® Patient Café® Virtual Town Meeting Ask The Expert ASCO Coverage Living Well Living Well ASH Coverage Virtual Town Meeting Virtual Town Meeting ASH Coverage

\"Very successful in presenting \"Wonderful an array of complex information program, optimistic, succinctly but also with personal warmth and a convincing display yet realistic\" of the team approach - expert doctor, nurse/practitioner, social worker.\" Aml MPN All patients ASH Coverage Patient Café® Clinical Trial Mybusters Webinar Series Living Well Digital Sherpa™ Ask the Expert Empowered Patientchat Facebook Virtual Town Meeting Path to Empowerment

Digital Sherpa™ Program The Digital Sherpa™ Program helps cancer patients and care partners become more tech-savvy in order to be empowered in their health by pairing them with college students who have I liked the interaction and found it been specially trained as digital “Sherpas”. was extremely uplifting to be able to improve someone's life. - In 2018, we carried out two versions of this program in Student partnership with Moffitt Cancer Center and Cancer Support Community. TOTALS AT MOFFITT 39 18 STUDENTS STUDENTS 2,551 2,485 PARTICIPANTS PARTICIPANTS Program was one of the best I’ve ever attended. SO much information and help! - Participant

More than Consistently More 32% Expected than Expected Ite3m2%2 48% 33% Ite6m8%1 68% As Expected 68% of participants and students found the 19% program a good use of their time more, or Responses when asked if the pairing of consistently more than expected patients/caregivers/family members with college students was beneficial I loved the individual attention. My Sherpa 80% I loved it! Being able to help people and was patient, kind, knowledgeable and had provide some type of clarity for the older Participants who said they a terrific sense of humor. - Participant learned more, or consistently population with technology is very more than expected, about the rewarding. - Student internet and social media 9 out of 10 participants and students would recommend the Digital Sherpa™ Program to another patient, care partner, or student

Clinical Trial Mythbusters Program This year, we continued our Clinical Trial Mythbusters program by exploring myths surrounding clinical trials including the following: Does the Clinical Trial Process Need an Extreme Makeover? Actionable Advice & Resources for Knocking Down Obstacles to Trial Participation What Is the Value of Diversity in Clinical Trials? 2 Healthcare Professionals 29% 7 Live Attendees 6,000+  total guests  patients and care 199 71% partners educated* Video Replays 5 Patients/Advocates *Program runs through Spring 2019 1,800+

Empowered #patientchat Program The Empowered Patient Chat (#patientchat) is a bi-weekly tweetchat that brings together patients, care partners, and advocates to learn from each other and discuss topics of interest to empowered patients. Average Impressions Per Chat Companion Facebook Group 1.7 million+ 6.96 Average Participants Per Chat Average Engagement 43.65 Total Tweets 8,216 Total Chats 20 Guest Hosts 6

fundraising Help Us Continue Our Mission Help us continue our mission to educate and empower patients and their care partners by increasing health literacy and assisting patients to receive the best, most-personalized care available. You can do this in two simple ways: Donate page When you shop with Amazon Smile, Amazon will donate 0.5% of the By visiting our 'Donate' page, price of an eligible purchase to Patient Empowerment Network. All donations are tax-deductible. Thank you in advance for your support! All you have to do is select PEN as your charity of choice! powerfulpatients.org/donate smile.amazon.com

capacity Staff and Volunteers In 2018, volunteers provided almost 1,300 hours of service valued at over $9,300 24 8 18 39 Core Advocacy Board of Medical Center Volunteers Staff Partners Directors Partners

Finances Annual Snapshot Management 22% Management lw New Pnreogwram Living 1W5e%ll Deve3lo%pment 15% 3% Cliniccatl Trial My9th%busters ate 12% 9% Programs Ask the Expert 12% P7ro8%grams Patient Friendly CCoon11vfce66eor%r%eanngcfee We pride ourselves on 28% Digitadl Ssherpa contributing 80% of revenue 33%% back into our programs Webinars / Town Halls 28% PaticeantfeCafe 1414%%

future In 2019, we will also be initiating a Digital Advisory Board. The role of our advisory board is to bring What to Look for in 2019 together diverse backgrounds, experiences, and expertise to help maximize the effectiveness and We are excited to share that we will be rolling out reach of PEN programs. Collectively, the board several new programs this year. These programs members will be instrumental in helping PEN are designed to increase health literacy by arming execute our strategy for 2019 and beyond. patients and their loved ones with accurate, clear information and actionable tools. Stay tuned for these programs and more exciting initiatives to come in 2019 by signing up for our As always, we aim to encourage patients to feel newsletter here. confident in their disease knowledge and to engage in effective communication with their healthcare team. 

Patient Empowerment Network 501(c)(3) Public Charity powerfulpatients.org @power4patients 20611 Bothell-Everett Hwy Bothell, WA 98012