Spotlight on Patient Power: Celebrating Partnerships in Cancer

Spotlight

I have written many times here about my frustration when groups that are supposed to have a devotion to cancer patients as their top priority get sidetracked by egos, distrust of one another, bureaucratic procedures and turf wars. Over the years, I have seen it happen much too often. But I am happy to report some instances now when groups are working together as true partners, and I want to call them out for credit.

Over the next weeks and months, Patient Power has plans to produce a number of “town meetings” for patients

Patients at a live patient "town meeting" at Seattle Cancer Care Alliance

Patients at a live patient “town meeting” at Seattle Cancer Care Alliance

and care partners affected by specific cancer types. And great organizations are helping in each case.  On Saturday, we’ll be at Moffitt Cancer Center in Tampa to produce an event for people with lung cancer. Over 200 people are expected in person and maybe 50 or more watching live online. Moffitt has been great in providing staff, an auditorium, expert medical personnel and a mailing to their patients. Joining us for this event, and we hope for others, is a wonderful advocacy group, LUNGevity. We proposed a way to expand their “Hope Summit” events, and they agreed. We have been very impressed.

Later in March, we’ll be in Phoenix working with our old friends at Banner MD Anderson Cancer Center. We will produce two town meetings there—one on melanoma with the Melanoma Research Alliance and a second with our friends at theCLL Global Research Foundation. We are excited to do more in melanoma and appreciate the guidance and oversight from MRA. In CLL, we are looking forward to working closely with CLL Global on many projects this year in the U.S. and overseas.

Beyond these events, we have other growing relationships. One relationship is withPatientsLikeMe as we make a clear connection between their cancer communities and ours and give new services back to both. HealthUnlocked is great, too. Another relationship is with the chapters of the Leukemia & Lymphoma Society who always stand ready to help wherever we go. And in our work in myeloma, we appreciate the partnership with Myeloma Crowd and in the MPNs with MPN Forum, the MPN Research Foundation, and PV Reporter.

And then there’s the AACR (American Association for Cancer Research) and theirCancer Today Magazine. They have been great about raising awareness of our activities, and we look forward to helping them and all the research efforts they support.

Of course, social media groups have been strong partners, too, acor.org and Facebook pages administered by many devoted patients and caregivers.

Our hat is off to all these folks as they prove we CAN work together for you. When cancer groups collaborate, you win. You should expect this kind of partnership. And if you come across an organization that seems to always go it alone, ask them why.

Wishing you and your family the best of health!

Andrew


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