Patient Power 2.0

For years we have been educating patients and family members who have been dealing with chronic conditions and cancers. We started in 1984. Typically this has featured medical experts and experienced patients in episodic programs, sometimes direct from big medical meetings. But day-in-day out patients try to talk to other patients. And the digital revolution has made more and more possible. Now it's time to take that to the next level - what I call Patient Power 2.0.

As a two-time cancer survivor and having interviewed thousands of patients I know we all long for a cure, or short of that, the longest, best life possible. And we want wisdom from anywhere we can find it. That's why our devotion to cancer, even as a small privately held (with no VC money) company has enabled us to reach over 400,000 people a month dealing with cancer. We've found immersing ourselves in social media has greatly helped a lot of people, and that is our goal.

But "helping" should be making an ever greater difference. And in this age of "machine learning" shouldn't technology, in a good way, help patients get where they need to go faster and with ever greater precision?

The other day I chatted with Dr. Irfan Kahn, founder of TrialScout. It was immediately apparent we are kindred souls. Both of us want patients to have actionable information and support easily accessible to them, just what they need when they need it, and backed up by the wisdom of the most reliable sources and credible patients who have gone before. Irfan is applying that to a much needed area, clinical trials, where participation is way too low and the rate of progress for new medicines way too slow. Can patient-to-patient wisdom make a difference? Can true consumerism among information-seeking patients put pressure on provider organizations to dos better, to be more transparent, to truly do what's right for patients, beyond what they think is right for their business? The same with drug companies and insurance companies. Can patient-to-patient sharing and ever greater groups of patients online have formidable clout? I am sure we are headed there.

At the suggestion of my future son-in-law, Simon, a University of Miami medical student hoping to be a neurosurgeon, I have started watching Dr. Lisa Sander's Netflix series, "Diagnosis". She uses her NewYork Times Magazine column to help people around the world connect about rare conditions and share solutions. Way beyond the steady stream of Facebook posts, technology can bring order to patients' urgent need to discover and share answers.

Patient Power 2.0 is that juncture of patients and family members worldwide per condition with researchers, providers and even government sprinkled in. There's the opportunity for technology to bring us all together in ways that have been too fragmented up until now.

The other day in the parking lot of the Breckenridge, Colorado resort, a couple pulled up alongside us in a blue mini-van. They were from Ohio and on vacation. They recognized us from our video work on the internet. And the man shared he has the same leukemia I have and that our website, patientpower.info, had helped a lot. He wants to share his story widely because his life has been saved by experimental, and potentially, breakthrough CAR-T therapy.

Now how can we do that 100,000 times over and much more efficiently? I know it's possible today and all of us can work together to make it happen. As Chris Cuomo says on CNN every weeknight "Let's get after it!"

I welcome your comments.