Books I read while writing Rebel Health

While writing my book, Rebel Health, I dove into the history of innovation and of the patient-led scientific revolution. I read the daring adventures of caregivers, survivors, and patients who pushed the edges of what is possible in medicine. I learned about clinicians’ and researchers’ perspectives on the changes happening in health care. And I studied up on the implications of our networked society. Thanks to the authors of the books listed below, I could stand on their shoulders, as the saying goes, to see further and ask new questions.

If you are looking for entry points for your own education about these topics, I wholeheartedly recommended every one of these wonderful books. And if you have a suggestion for further reading, comments are open.

On the patient-led scientific revolution:

Steven Epstein, Impure Science: AIDS, Activism, and the Politics of Knowledge (Berkeley: University of California Press, 1996).

Dana M. Lewis, Automated Insulin Delivery: How artificial pancreas “closed loop” systems can aid you in living with diabetes (Independent Publication, 2019). 

Fiona Lowenstein, editor, The Long Covid Survival Guide: How to Take Care of Yourself and What Comes Next (New York: The Experiment, 2022). 

Amy Dockser Marcus, We the Scientists: How a Daring Team of Parents and Doctors Forged a New Path for Medicine (New York: Riverhead Books, 2023).

Alondra Nelson, Body and Soul: The Black Panther Party and the Fight Against Medical Discrimination (Minneapolis: University of Minnesota Press, 2013).

Ryan Prior, The Long Haul: Solving the Puzzle of the Pandemic’s Long Haulers and How They Are Changing Healthcare Forever (New York: Post Hill Press, 2022).

Sara Riggare, Personal science in Parkinson’s disease: A patient-led research study (Sweden: Uppsala University, 2022).

Patient and caregiver perspectives:

Susannah Cahalan, Brain on Fire: My Month of Madness (New York: Simon and Schuster, 2013).

e-Patient Dave deBronkart, Laugh, Sing, and Eat Like a Pig (Media, PA: Changing Outlook Press, 2010). 

Ross Douthat, The Deep Places (New York: Convergent Books, 2021). 

Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America (New York: Walker Publishing Company, 2013).

Sorrel King, Josie’s Story: A Mother’s Inspiring Crusade to Make Medical Care Safe (New York: Grove Press, 2009). 

Susannah Meadows, The Other Side of Impossible (New York: Penguin Random House, 2017). 

Abby Norman, Ask Me About My Uterus (New York: Nation Books, 2018). 

Meghan O’Rourke, The Invisible Kingdom: Reimagining Chronic Illness (New York: Riverhead Books, 2022).

Elaine Schattner, From Whispers to Shouts: The Ways We Talk About Cancer (New York: Columbia University Press, 2023).

Siren Interactive, Uncommon Challenges; Shared Journeys (Oak Park, IL: Siren Interactive, 2011).

Laurie Strongin, Saving Henry: A Mother’s Journey (New York: Hyperion, 2010). 

Mary Elizabeth Williams, A Series of Catastrophes and Miracles (Washington, DC: National Geographic Partners, 2016). 

Researcher and clinician perspectives:

Paul Batalden, editor, Lessons Learned in changing healthcare and how we learned them (Toronto: Longwoods Publishing Corporation, 2010). 

Robert Bazell, HER-2: The Making of Herceptin, A Revolutionary Treatment for Breast Cancer (New York: Random House, 2011).

Jan Berger and Julie Slezak, Re-engaging in Trust: The Missing Ingredient to Fixing Healthcare (Denver: Outskirts Press, 2021). 

e-Patient Dave deBronkart with Danny Sands, MD, Let Patients Help (Independent Publication, 2013).

David Fajgenbaum, MD, Chasing My Cure (New York: Ballantine Books, 2019). 

Tom Ferguson, MD, Medical Self-care (New York: Summit Books, 1980). 

Tom Ferguson, MD, Health Online (Reading MA: Addison-Wesley Publishing Company, 1996). 

Tom Ferguson, MD, e-Patients: How They Can Help Us Heal Healthcare (e-patients.net, 2007). 

Diana E. Forsythe, Studying Those Who Study Us: An Anthropologist in the World of Artificial Intelligence, (Stanford CA: Stanford University Press, 2001).

Jan Oldenburg, editor, Engage! Transforming Healthcare Through Digital Patient Engagement (Chicago: Healthcare Information and Management Systems Society, 2013). 

Victor Montori, MD, Why We Revolt: A patient revolution for careful and kind care (Rochester, MN: The Patient Revolution, 2017).

Eric Topol, The Patient Will See You Now: The Future of Medicine is in Your Hands (New York: Basic Books, 2015).

On innovation:

David Epstein, Range: Why Generalists Triumph in a Specialized World (New York: Riverhead Books, 2019).

Jon Gertner, The Idea Factory (London: Penguin Press, 2012).

Vijay Govindarajan and Ravi Ramamurti, Reverse Innovation in Health Care (Boston: Harvard Business Review Press, 2018)

Walter Isaacson, The Innovators (New York: Simon and Schuster, 2014).

Lois Kelly and Carmen Medina, Rebels at Work (Sebastopol, CA: O’Reilly Media, 2014). 

Christopher M. Schroeder, Startup Rising (New York: Palgrave Macmillan, 2013). 

Eric von Hippel, Free Innovation (Cambridge, MA: MIT Press, 2016). 

On networks:

James H. Fowler and Nicholas A. Christakis, Connected: The Surprising Power of Our Social Networks and How They Shape Our Lives – How Your Friends’ Friends’ Friends Affect Everything You Feel, Think, and Do (Boston: Little, Brown, and Company, 2011).

Geoffrey G. Parker, Marshall W. Van Alstyne, Sangeet Paul Choudary, Platform Revolution (New York: W.W. Norton & Company, 2016).

Lee Rainie and Barry Wellman, Networked (Cambridge, MA: MIT Press, 2012).

Howard Rheingold. The Virtual Community (Cambridge, MA: MIT Press, 1993).

Image: A snapshot of my office bookshelf. Note that I listened to audio versions of some books and others are PDF-only, so it’s not a complete picture of the my bibliography!