Patient’s Urgent and Ongoing Search for Cancer Information

As we have written many times here, the pace of research and discovery in many cancer types is accelerating. I wish it was for all cancers, but I take heart in that it is for some.

As we have written many times here, the pace of research and discovery in many cancer types is accelerating. I wish it was for all cancers, but I take heart in that it is for some. Two of which I have: CLL and myelofibrosis. I thought I was in the minority of people who are on a daily quest for “what’s new.” But a preliminary look at the results from our ongoing Patient Power 2014 Survey shows I am far from alone. Many patients today not only seek information at time of diagnosis, they continue to seek information daily, or even weekly, for as long as 10 years after their diagnosis. The quest is ongoing, especially in areas where there is the sense that things are changing. Much of the quest is online, but it is also the willingness to make an extraordinary effort to attend in-person educational events – to meet others and hear from experts. This weekend, I am the host of such an event for CLL patients at MD Anderson Cancer Center in Houston. We thought 75-150 people would attend. But close to 350 plan to. To make sure we had enough room, we asked whether some of the people who registered weeks ago now have had a change of plans. Nobody has. I believe there is an expanding percentage of patients who have taken on the responsibility of understanding and managing their illness and not just leave the decisions to their doctor. Yay!

There are lessons in all this. First, doctors had better be prepared for educated questions and they better have informed answers. Second, the medical industry had better support high-speed, independent channels that inform and empower patients. Industry is either prohibited by law in some quarters from doing that, or by their own onerous regulatory processes. I understand their limits, it just flies in the face of what today’s patients want and expect.

To fill this need well information channels like ours need to work closely with not one hospital or advocacy group, not one expert, but many. It’s what I call “the big tent” approach. We are all in this together and must work together without egos and squabbles to do what’s right for today’s patients. They expect that of us. I am happy to tell you the CLL event is a great example: Patient Power working with the CLL Global Research Foundation, MD Anderson Cancer Center and in collaboration with the Leukemia and Lymphoma Society, CanCare, ACOR.org, and The American Cancer Society. Educational grant support is from AbbVie and Pharmacyclics.  My goal is to reproduce this with other events globally, and sustained digital communications and community in several cancer types.

Today I had a meeting with a leader of from MPDVoice and MPN patients in Europe. We were “on the same page” on much of this. So I am heartened, with leaders coming together, we can deliver on what patients want: the latest information to help them be cured or, short of that, to live well with a “chronic cancer; to meet others with the same condition in person or online; and to have the tools to advocate for themselves with their doctors and with government and insurance regulators so they get the care they need and deserve. What’s cool is that the leading doctors support this too, as I heard in my recent interview with Dr. Haifa Al-Ali in Leipzig, Germany. She, like a growing number of here peers “get it” that an informed patient is the best way to move personal care and disease knowledge and discovery forward.

I believe we are on the cusp of big change in several conditions. It’s encouraging. You can still help by adding your voice. If you haven’t already done so, please take a minute to participate in our survey. About 700 people already have but I am reaching for 1,000 responses. Then we’ll have quite a story to tell and a case for supporting the type of activities described above that can help us all.