andrew_esther_sandiego_paperDear Patient Power visitors: 

Happy New Year! I am writing to you with a brief look back and an exciting look forward.

Esther and I founded Patient Power LLC in February 2005—first as a weekend radio show on KVI/Seattle (our former hometown) and weekday, one-hour medical talk shows on The Health Radio Network. We then launched the patientpower.info website and, later, launched our social media presence on Facebook and Instagram.

Thanks to you, the website now receives almost 90,000 visits a month, and we reach another 150,000 patients and care partners a month via social media. Our team now includes several members who have worked with us for 10 to 15 years, and they are thrilled that we inform and empower so many. We are all grateful for the trust you put in us.

Now—about 2019. Here are some quick updates:

Important independent survey. In January, we will launch an initiative called Cancer Patient View.  Some of our members—starting with folks (like Andrew) who have CLL—will receive an invitation to participate in a brief survey. We are partnering with renowned data scientists to do our own surveys so we can better understand key issues facing patients. Highlights of the resulting report will be shared with you and will help inform toward better care with hard facts.

New, state-of-the-art website. We are investing substantial resources to develop a new and improved version of patientpower.info—one that will work well on all platforms and help you more easily get to the information you need and deserve. It’s a big undertaking so it will take a few months. But stay tuned! Meanwhile, feel free to send us suggestions anytime to comments@patientpower.info.

The ABCs of Patient Empowerment. As Andrew is a Medicare patient on infused and oral therapies, we know how expensive cancer care is today and how costs can add anxiety and burden to patients and families. There are often barriers to getting state-of-the-art care in the U.S. and in many other countries. In 2019, we’ll ramp up our “ABCs” programming to help you be informed and to share your voice as part of our Patient Power Ambassadors initiative, so patients get the best possible care without having to fight for it or be further debilitated.

Grassroots Cancer Education Programs. As you know, we have access to and feature world famous cancer experts from many key medical centers. But more often people receive care at the “community” level—at smaller hospitals and clinics—near where they live. So, in 2019, we’ll do much more to help patients at these locations have confidence that they are getting personalized access to today’s flow of breakthrough therapies and important clinical trials.

Program enhancements. We are increasing the number of webinars and “Ask the Expert” live programs. However, sometimes these programs are too short to get to all your important questions, or the topics on the programs trigger new questions from you.  So, this coming year look for our new “The Conversation Continues” feature that will become part of our live programs. You will be able to post additional questions after the live program ends. You’ll also have the opportunity to volunteer to be part of ongoing discussions with hospital administrators, scientists, and drug developers so they can better understand your journey with a serious illness and your voice can be heard. 

Live coverage from medical conventions. We were thrilled with so many people watching the live updates we produced from the recent American Society of Hematology convention, bringing the latest news to you, the patient or family member, and where you can ask questions on the spot of newsmakers. Our plan is to do this more often and routinely.

More voices and faces leading our programs. We both love hosting programs and we’ve done it since the mid 1980s. In 2018, we invited several patients, family members, as well as diet, exercise, and mindfulness experts to participate in live programs on our Facebook page and on the patientpower.info website. Just like your favorite people in television, we are grooming new hosts to add variety and other perspectives.  Of course, if you think you’d be great on camera or have someone else to suggest, write us and—if you can—send a video clip. Consider this a “Patient Power’s Got Talent” search J. 

As we enter 2019, there are sure to be changes in our wobbly healthcare systems. Looming are improvements to the synthesis of data about us as patients to promote understanding, efficiency and safety. We welcome that. However, we can assure you that the information you give us will always be protected. What you tell us is confidential and will never be shared unless we ask you first, explain why we are asking, and get your approval.

So, let’s power into 2019 with better health and energy—harnessed for all of us to work together to help ourselves and others. Here at Patient Power we are honored to help lead this charge. 

Happy New Year!

Andrew and Esther Schorr
Co-Founders, Patient Power 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.