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).
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