“town meeting

I am writing to you as I am between cycles of monthly infused treatment for chronic lymphocytic leukemia and while I take daily medicine for a second blood cancer, myelofibrosis. So I think like a patient and not at all like a corporate executive or business person. As a patient helping lead a sustained communications effort for patients, I wanted to update you on where we’ve been and where we are headed—always seeking your suggestions along the way: 

  •       Expansion of cancer areas and topics covered and increased frequency of programs: Over the past year we added two centers—head and neck cancer and acute leukemias, and we have greatly increased the frequency of programs we have produced across all illnesses. What’s made it easier is video conferencing technologies that both world renowned experts and our Patient Power hosts and patients have at their fingertips. Using an easily accessible program called “Zoom,” we have been able to have frequent conversations with medical experts, patients and family members to further demonstrate how even with more rare conditions we are all in this together as a community. As a former national television producer, I am thrilled we can do this! 

languages

  •       Multilingual content and more international news coverage: Some months ago, we started interviewing experts in many languages besides English. Now we have some content in Greek, Polish, Czech and, of course, Spanish, French, Portuguese, Italian and German. I dream about Mandarin and Arabic too, since so many people speak those languages. And we are all affected by cancer. For our relatively small group, multilingual content is a significant transition, and we hope you will forgive us for some shortcomings as this happens. Right now, all content is “auto-translated” into several languages. With cancer discussions that can leave some gaps, and for that we apologize. We are working on that and to have real human medical transcriptionists play a greater role. 
  •       Of course, to produce frequent content, personalize it for you whether by where you are in your journey or by language or where you live takes increased resources: That’s what I work on every day: partnerships with like-minded and innovative companies and forward-thinking advocacy groups. And I am delighted to say we are securing the attention of more and more medical and healthcare companies that know they should support education. Sometimes they ask us whether we will accept advertising, and we do. But our promise to you is that these advertisers have zero influence on our content. All editorial control rests with our very experienced team of producers and hosts. What I am pleased about is that patient communications are no longer an afterthought, but rather front and center.
  •       One last note about our latest activities: We are increasingly active in social media, and I thank Facebook community leaders for letting me join in even when I am not living with their condition. It is gratifying that they see Patient Power as a true partner who is trusted. This year, we’ve started a new community, too, called The Cancer Connection. As I write this, it has grown to nearly 63,000 followers. And a typical posting may have 50 or 100 comments—sometimes hundreds. That, to me, is thrilling.

So taken together we are trying to do more for more people more frequently and globally and through multiple channels. Sometimes it’s in-person “town meetings”, sometimes it’s live webinars, sometimes it’s on-the-ground coverage at major medical meetings, sometimes it’s on demand individual and group interviews. But no matter what, our only guide is doing what’s right for you. That’s our “North Star” and always will be.

Just this week we wrapped up our latest Patient Power Survey, and almost 1,200 of you took the time to participate. Thank you! We’ll publish the results soon, but the bottom line is you make use of our educational programs to get better care, and we are so gratified we have helped in this way. You can count on us to do more, and more! 

Please write me anytime at Andrew@patientpower.info

We wish you and your family the best of health!

Andrew Schorr
Founder & President, Patient Power LLC

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.