PMWC-panelLast week I attended the Precision Medicine World Conference in Mountain View, Calif. A few hundred next-generation sequencing scientists, business folks and vendors were there. But I was among the few patients who actually benefited from their work. That's a problem. So is the fact that my wife, Esther, and I led about the only session out of many that featured patients—stage IV lung cancer patients who are alive today because THEY pushed for state-of-the-art genomic testing, so they could get "precision medicine." Both patients, Don and Lisa, would not be alive without that approach.

Our session, "How Immunotherapy Saved My Life" had only about 30 people in the audience. Frankly, that bugged me because there were 200 in other sessions, and our message was an important one that was being missed.

Right now, most patients with fatal conditions like lung cancer do not get the testing that could be key to the right treatments. Nor are they told about clinical trials. Some are just given palliative care and told to get their affairs in order. So instead of being like Lisa and Don who are beating the traditional odds, their life is all too short. Therefore, if the NGS people want their businesses to thrive, they need to have active and amplified dialogue and support of patients who could benefit from what they have developed.

In the recent past, marketers at a liquid biopsy company told me they felt it was not their job to tell their story to patients or to facilitate education on how their test could help. They felt, as many diagnostic companies have traditionally felt, that it is pharma's job—or maybe the doctor. Guess what? Most doctors neither have the time or knowledge to do this communication let alone keep up with the fast moving genomic landscape. And pharmas are only now—not all—coming into the "patient centricity" way of thinking. Shouldn't NGS people join in too? Oh how I wish more of them had been in our session to meet Don and Lisa (and me since I have had Foundation Medicine's Heme One test twice to inform my care).

If I were an investor in an NGS company, I would be asking when I would see a growing return on my investment. Given that patients can ask key questions and take action that could stimulate quicker uptake of testing I would be asking CEOs why their company isn't more engaged with patients. Am I wrong?

As I have said before, patients with serious conditions like lung cancer are desperate to get the best care. If they can be informed on key questions to ask as a gateway to state-of-the-art care, I am confident it could save lives. So dear NGS people, please get involved. And the next time forego yet another science session to hear how we can make a difference together!

By the way, to facilitate collaboration we have helped start a grassroots initiative called Precision Medicine for Me. We've done it on a shoestring with Antidote and partners including PatientsLikeMe, Lung Cancer Alliance, Bonnie Addario Lung Cancer Foundation and several other great groups. Please see our new web portal and join in! And here is our news release.

I welcome your comments and support for getting patients and new science people working together—and not just when a new product is marketed.

Knowledge really CAN be the best medicine of all!

Andrew Schorr
Founder of Patient Power

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.