slippersAs we are at the mid-2016 mark, it’s probably appropriate that I update you on a behind-the-scenes look at Patient Power. Perhaps, like you, each year we do some goal setting, and we have a planning retreat near Seattle in August to start. Remember, Patient Power really has no “office,” as the team works virtually around the world. It’s much cheaper, and we get to wear our fuzzy slippers while we work. :)

Last August, we set goals to expand…more visitors and members, more content distribution channels, more partners, more languages, covering more countries and a wider group of cancers. We also set out to bring in more voices from the communities we serve and to get more involved in policy issues that affect our communities.

I am happy to report we’ve been pretty successful—with your help—and I’d like to tick off some examples, with great thanks to the Patient Power team who made it happen:

    • In a typical month, the main Patient Power websites have about 55,000 visits. But our reach is greatly amplified by exposure on social media pages and others websites—like OncologyTube.com where our videos have been viewed 2.3 million times, in many cases, by doctors.
    • We have growing partnerships. This includes an expanding one with the American Association for Cancer Research and their 37,000 members. Our goal is to work with them to connect patients with researchers and move us all toward cancer cures—faster!
    • Several new hosts have been working with us—patients who are living the condition that’s discussed. Janet Freeman-Daily is a lung cancer patient who is adding so much perspective. She hosts a town meeting coming up in September in Chicago.
    • We’ve kicked off our “Where Are They Now?” series of blogs and videos sent in by patients we’ve met before to tell everyone how they are doing and to inspire us.
    • Esther and I have launched regular LIVE video updates on Facebook, and we are looking forward to conveniently and quickly sharing the perspectives of others, too.
    • joe-bidenRecently, I participated in a workshop about cancer drug costs with the President’s Cancer Panel. I was honored to be included, and it’s clear we can bring patients’ perspective to key public policy issues. A couple of weeks later, Esther and I participated in Vice President Biden’s Cancer Moonshot Summit and, again, it was thrilling to add our voices to major discussions about cancer.
  • Our creation of new video content has stepped up, too, with more town meetings in the second half of the year across several cancer conditions. We’ll be in my old hometown of Charlotte, and in Little Rock, Chicago, the Los Angeles area and Houston. The recent events in my other old hometown of New York City were very satisfying. And, of course, we were at the big ASCO meeting and will be at ASH in San Diego in December.
  • Our activities are not just in the U.S. Our team who runs PatientPower.eu have been busy in Europe covering medical meetings for patients, signing partnerships with government cancer agencies like CNIO in Spain, and planning town meetings like one on CLL in Barcelona for people who speak Spanish anywhere.
  • andrew-esther-irelandThe drumbeat for “patient centricity”: finally governments and pharmas want to more regularly hear the voice of patients. Because many of you are members of our communities, we have called on you to help us bring the “patient voice” to these groups. Many of you have volunteered and we have had discussions between patients and these interested parties in Miami, Dublin, Chicago and near San Francisco just to name a few. Thank you for being willing to share your voice this way and in our regular surveys on key topics!
  • Lastly, we are now covering more cancers. The newest area is head and neck cancer, and we are gratified that patient groups and foundations in this area are happy to partner with us. As research moves ahead we are hoping we can tell a positive story for patients and caregivers.
Before I wrap up, I wanted to clarify a few things: first, the team at Patient Power does this much more for love than money. While we are technically a “for profit” (like PatientsLikeMe, Facebook, NBC, CNN and BBC, etc.), we reinvest everything we can. So often we produce important programs that have no sponsors or advertisers. And everything is always free and editorially independent. Second, we welcome true partners. We have open arms to work with and help others who will treat us the same way. We are always positive, hopeful, and not at all “territorial” or jealous. We believe when we all work together, “all boats rise.”

I know this is a lot to read and much longer than the typical blog, but I am writing this in the foothills of the Sierra Mountains near Yosemite in California. It’s peaceful, and I finally have had the chance to put on paper so many things I have wanted to tell you.

Please know that what you see from Patient Power comes from many people who are totally dedicated to you. And you always have a voice to contribute or to tell us how we can improve. We welcome your comments and suggestions as we strive to make the second half of 2016 a great one and a healthy one for all of us!

Wishing you and your family the best of health!

Andrew