Advocating for Patients at ASCO, The “World Series” of Cancer

I am off to Chicago to mingle with 30,000+ people from around the world whose passion is curing cancer and helping people who are living with it. In years past I have gone as a journalist to bring you cancer news, but not this year. I was not given a press pass because the organization’s policies are among the most restrictive of any medical society. That’s a story for another day. However, I was invited to attend as a “patient-advocate.” And, at my core, I guess that’s what I am.

This year I have a new story to tell. After many months in the offing, I am now a board member of the brand new, nonprofit Patient Empowerment Network (PEN). This has a slightly different mission than Patient Power which is largely focused on educating patients who have been diagnosed with a serious condition. Patient Power provides information on the illness and treatments – It’s a connection between leading experts, the latest news, and you. PEN is all about “medical consumerism.” It’s for anybody who wants to be more in control of their health and healthcare. It will provide all sorts of tools to be more confident and in control as you interact with the healthcare system. It’s everything from how to navigate the web for reliable information (The Web-Savvy Patient book), to how to get smart about important health issues (the podcasts I co-host with Peter Frishauf), to “How to be a Powerful patient” town meetings that we are planning in partnership with major medical centers around the country. We even have a dream of accrediting healthcare providers as to them meeting a patient empowerment standard that we, and people like you, will set. It would be sort of a ranking on what matters to patients beyond the clinical measurements.

I am excited the PEN is getting off the ground. Now, this weekend comes our first big test. 1) Will non-profit advocacy groups welcome us or feel threatened? They shouldn’t feel threatened because we want to work with all of them. 2) Will pharma and other big players in the medical industry chip in with grants to facilitate more Americans becoming “powerful patients?” Will they support consumerism or will they only fund commercials for their products? I am hopeful the people I am about to meet who do “advocacy relations” from some of these multi-billion dollar giants in one of the most profitable industries will see fit to fund worthy projects we may propose.