Blachman Jeremy - The patient equation: the data-driven future of precision medicine and the business of health care

1. Chapter 1
2. Chapter 2
3. Chapter 9
4. Chapter 10
5. Chapter 11
6. Chapter 12
7. Chapter 14

GLEN DE VRIES
WITH JEREMY BLACHMAN

Copyright 2020 by Glen de Vries. All rights reserved.

Published by John Wiley & Sons, Inc., Hoboken, New Jersey.

Published simultaneously in Canada.

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Library of Congress Cataloging-in-Publication Data

Names: De Vries, Glen, 1972 author. | Blachman, Jeremy, author.

Title: The patient equation : the datadriven future of precision medicine and the business of health care / Glen de Vries with Jeremy Blachman.

Description: Hoboken, New Jersey : Wiley, [2020] | Includes bibliographical references and index.

Identifiers: LCCN 2020000657 (print) | LCCN 2020000658 (ebook) | ISBN 9781119622147 (hardback) | ISBN 9781119622178 (adobe pdf) | ISBN 9781119622277 (epub)

Subjects: MESH: Precision Medicine | Data Collection | Biomedical Technology | Monitoring, Ambulatory | Data Science

Classification: LCC R856 (print) | LCC R856 (ebook) | NLM WB 102.7 | DDC 610.28dc23

LC record available at https://lccn.loc.gov/2020000657

LC ebook record available at https://lccn.loc.gov/2020000658

Cover Design: Wiley

Cover Image: teekid/Getty Images

About a decade ago, I met Jack Whelan. An investment researcher working in the world of finance, Jack powerwalked from the train to his office every day for yearsuntil he noticed that walk getting more and more difficult, along with occasional nosebleeds that prompted him to see his doctor. He was diagnosed with a rare blood cancerWaldenstrom macroglobulinemia (WM)and his world changed completely. WM was (and is) incurable, with no FDAapproved treatments and an expected survival of just five to seven years. Wanting to extend his life, Jack sought out clinical trial after clinical trial. The first three trials failed, and then his fourth finally got him on a drug that stopped the cancer's progression for years.

Throughout his experience, Jack became an expertand, more important for our story here, a tracker. Jack demanded weekly blood tests and charted a range of biomarkershematocrit, immunoglobulin, and othershoping to find answers in the numbers, to be able to know if he was responding to treatment even before the doctors did. From physician to physician, from trial to trial, he brought these numbers with him in Excel spreadsheets. He hoped this growing collection of data about his body would uncover new and valuable information that could keep him alive.

Jack's diligence and initiative is rare, but he's not alone. Ray Finucane, a 75yearold mechanical engineer with Parkinson's disease, built an app to track his symptoms and to try to optimize the dosing of his levodopa medication. Dr. David Fajgenbaum used his own blood samples and software to find a new plausible biological explanation for Castleman disease that led him to try a drug never before applied to the conditionwhich has led him into remission for the past six years. Millions of people around the worldsick or notwear fitness trackers or carry smartphones that are able to track massive amounts of data at a far more granular level than we could have ever conceived of just a few years ago.

Imagine a world where this data was harvested, analyzed, and combined with all of the medical records that are collected over the course of our lives and assembled into something useful, something to extend longevity and enhance the quality of life.

Imagine if a patient like Jack didn't need to track his own body in an Excel spreadsheet because there were systems and devices that were doing it for him. What if he could do this while harnessing the collective wisdom of all of the research and realworld experience of the scientists, physicians, and patients who came before him to produce recommendations for the most effective treatments, the most critical behaviors, and the most valuable things he needed to know to beat his cancer and optimize his health?

Imagine a world where as soon as something useful could be detected, be it a data point we can track with conventional medical measurements or a misbehaving molecule or behavioral pattern that we may not even fully appreciate today (something about our sleep, our cognition, what we eat or drink, or an aspect of our environment, as just a few examples), we would be prompted to take action, use a medical device or drug, or change some aspect of how we live.

Instead of being limited to waiting for a scan to show an increased tumor volume or a blood value concentration rising to a level detectable by a relatively crude chemical medical test, imagine realtime, populationtested, scientificallyvalid, differencemaking, actionable recommendationswhether you're fighting cancer or just trying to maintain a healthy, highquality life.

This is the future, and the analysis behind the scenes that will produceand is already producingthese types of information are the patient equations that inspired the title of this book. Jack was ahead of his time because he knew that the numbers and his careful tracking of them mattered. His engineering intuition told him that within those numbers were the mathematical keys to unlocking extended life, and making sure he got the right treatments at the right time.