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Richard Davies deBronkart Jr (born February 18, 1950), widely known as e-Patient Dave, is a cancer patient and blogger who, in 2009, became a noted activist for healthcare transformation through participatory medicine and personal health data rights.
In January 2007, a routine shoulder x-ray incidentally disclosed a shadow in the lung, which turned out to be metastasized kidney cancer (stage IV, grade 4 renal cell carcinoma). His median survival time at diagnosis was 24 weeks. A member of online communities since CompuServe in 1989, he responded by seeking online resources in addition to receiving treatment at Beth Israel Deaconess Medical Center. [1] [2] [3] [4]
His kidney was removed laparoscopically and he was treated in a clinical trial of high-dose interleukin-2 (HDIL-2), ending 7/23/07, which was effective in reducing the cancer, although his femur ultimately broke from damage caused by the disease. Visible lesions on follow-up CT scans continued to shrink for two years following treatment, and the cancer was determined at that time to be in remission. [1]
Before and during his illness, he had been writing journals and blog posts about his experiences. On the hospital's blog he signed himself "Patient Dave"; upon recovery from near-death he started a blog "The New Life of Patient Dave." In January 2008 he learned of the so-called "e-Patient White Paper" by Dr. Thomas William Ferguson, which described how patients are using the Internet to participate actively in their care. [5] He recognized it as a match for his own actions during his illness and renamed himself "e-Patient Dave," and his blog The New Life of e-Patient Dave.
He became the most active blogger on e-patients.net, a blog founded by the late Dr. Tom Ferguson, which he now manages. In February 2009, Ferguson's e-Patient Scholars Working Group elected him founding co-chair (with his physician, Dr. Danny Sands) of the Society for Participatory Medicine. [6] At conferences and meetings he is a frequent speaker about the "e-Patient" movement, also referred to as "patient engagement" and "participatory medicine."
Early in 2009, deBronkart decided [7] to activate his hospital's option to transfer his personal health data into Google Health, Google's personal health record (PHR) system. As described in a 3300-word blog post, [8] the transferred data contained much erroneous information: a false medication warning, exaggerated diagnoses, and conditions he'd never had. In addition, the system failed to transfer existing information such as laboratory results, radiology reports, and allergies.
The post was picked up on many blogs, and on April 13, 2009, was covered on the front page of The Boston Globe . [9]
The central problem was that the hospital transferred insurance billing codes, not clinical data. The Globe said billing codes "sometimes reflect imprecise information plugged into codes required by insurers. ... some doctors fear that inaccurate information from billing data could lead to improper treatment." [9]
The timing of the discovery was accidentally important because, at that time, national political negotiations were underway to promote the adoption of computerized medical record systems. Referring to the 2009 ARRA economic stimulus package, the Globe said:
Within days the hospital announced it would no longer use billing data as a proxy for clinically valid information. [10]
The following week deBronkart, Google, and the hospital were scheduled to speak at a major industry conference "Health 2.0 Meets Ix," [11] and the PHR story became one of the main topics. By end of the month over 11,000 articles and blog posts on the subject had appeared. [12]
In May 2009, citing "a bumpy and public transition of his medical records," the Boston Globe called him "a recognized online champion of 'participatory medicine'." [13]
deBronkart became a frequent speaker at healthcare industry conferences. He was the first patient to deliver the opening keynote at a Medicine 2.0 conference, [14] and spoke at many others throughout 2009. [15]
In July, the annual Best Hospitals issue of U.S. News & World Report cited him in its article "Getting Medical Advice on the Web from Other Patients." [16]
In September 2009 he delivered the opening keynote (photo above) at the Medicine 2.0 Congress in Toronto. [14] The same month he was featured in the cover story "Patient of the Future" [4] in Health Leaders magazine. Three months later the magazine named him and his physician, Dr. Danny Sands, as two of the annual "20 People Who Make Healthcare Better". [6]
That keynote was titled "Gimme My Damn Data." [17] In January 2010 CNN's Empowered Patient feature [18] quoted him and alluded to the speech's title in its headline, "Patients demand: 'Give us our damned data.'"
Addresses in early 2010 expanded his audience.
In April 2011 he gave a talk at TED (conference), [22] set up by Lucien Engelen (of the Radboud University Medical Center), that got featured on the TED.com platform. [22]
In March 2010 his hospital invited his participation as a voice of the patient in their annual Lean quality improvement workshop. A series of blog posts described the experience. [23]
He is the author of three books. The best known is "Let Patients Help: [24] A Patient Engagement Handbook," published in 2013 on the CreateSpace Independent Publishing Platform.
Laugh, Sing, and Eat Like a Pig: [25] How an empowered patient beat Stage IV cancer (and what healthcare can learn from it), published in 2010 by Changing Outlook Press. The title comes from the positive approach he chose to confronting his disease: Laugh (as Norman Cousins did when facing a fatal condition in the 1960s), Sing (his doctor advised him *not* to drop out of his chorus), and Eat Like a Pig (his doctor ordered a diet to increase his caloric intake). The third, "Facing Death - With Hope" is a small extract from this book.
After a career in high tech marketing outside Boston, these events led to healthcare transformation and policy issues taking an increasingly large part of his time. In summer 2009 he opened a consulting practice, ePatientDave.com, [26] and went full-time in healthcare in February 2010. He lives in Nashua, New Hampshire.
Health informatics is the study and implementation of computer structures and algorithms to improve communication, understanding, and management of medical information. It can be viewed as branch of engineering and applied science.
Massachusetts General Hospital is the original and largest teaching hospital of Harvard Medical School, Harvard University located in the West End neighborhood of Boston, Massachusetts. Massachusetts General Hospital houses the world's largest hospital-based research program, the Mass General Research Institute, with an annual research budget of more than $1.2 billion in 2021. It is the third-oldest general hospital in the United States with a patient capacity of 999 beds. Along with Brigham and Women's Hospital, Mass General is a founding member of Mass General Brigham, formerly known as Partners HealthCare, the largest healthcare provider in Massachusetts.
Brigham and Women's Hospital (BWH) is the second largest teaching hospital of Harvard Medical School and the largest hospital in the Longwood Medical Area in Boston, Massachusetts. Along with Massachusetts General Hospital, it is one of the two founding members of Mass General Brigham, the largest healthcare provider in Massachusetts. Robert Higgins, MD, MSHA serves as the hospital's current president.
Computerized physician order entry (CPOE), sometimes referred to as computerized provider order entry or computerized provider order management (CPOM), is a process of electronic entry of medical practitioner instructions for the treatment of patients under his or her care.
Oracle Cerner, formerly Cerner, is a US-based supplier of health information technology (HIT) platforms, services, and hardware. In February 2018, more than 27,000 facilities globally utilised Cerner products. The company had more than 29,000 employees globally, with over 13,000 in Kansas City, Missouri. Its headquarters are in the suburb of North Kansas City, Missouri.
Google Health was a project by Google designed as an attempt to create a repository of health records and data in order to connect doctors, hospitals and pharmacies directly. The project was introduced in 2008 and discontinued in 2012. Google Health was restarted in 2018, but appeared to be discontinued in 2021 and was officially called an "effort" rather than a separate division as of 2022.
An e-patient is a health consumer who participates fully in their own medical care, primarily by gathering information about medical conditions that impact them and their families, using the Internet and other digital tools. The term encompasses those who seek guidance for their own ailments, and the friends and family members who research on their behalf. E-patients report two effects of their health research: "better health information and services, and different, but not always better, relationships with their doctors."
Jessie Gruman was a social psychologist active in the movement to incorporate evidence into health care and to help consumers adopt healthier behaviors. Gruman was the founder and president of the Washington, DC-based Center for Advancing Health from 1992 to 2014. She was the author of the book AfterShock: What to Do When the Doctor Gives You — or Someone You Love — a Devastating Diagnosis. She lived in New York City.
"Health 2.0" is a term introduced in the mid-2000s, as the subset of health care technologies mirroring the wider Web 2.0 movement. It has been defined variously as including social media, user-generated content, and cloud-based and mobile technologies. Some Health 2.0 proponents see these technologies as empowering patients to have greater control over their own health care and diminishing medical paternalism. Critics of the technologies have expressed concerns about possible misinformation and violations of patient privacy.
Health information technology (HIT) is health technology, particularly information technology, applied to health and health care. It supports health information management across computerized systems and the secure exchange of health information between consumers, providers, payers, and quality monitors. Based on a 2008 report on a small series of studies conducted at four sites that provide ambulatory care – three U.S. medical centers and one in the Netherlands, the use of electronic health records (EHRs) was viewed as the most promising tool for improving the overall quality, safety and efficiency of the health delivery system.
Healthcare in the United States is largely provided by private sector healthcare facilities, and paid for by a combination of public programs, private insurance, and out-of-pocket payments. The U.S. is the only developed country without a system of universal healthcare, and a significant proportion of its population lacks health insurance.
Paul Grundy is an American physician known as the "godfather" of the Patient Centered Medical Home. He was named a member of the Institute of Medicine, and recipient of the Barbara Starfield Primary Care Leadership Award and the 2012 National Committee for Quality Assurance(NCQA) Quality Award.
Sky Lakes Medical Center is a 176-bed hospital located in Klamath Falls, Oregon, United States. Sky Lakes is also a teaching hospital affiliated with Oregon Health & Science University Medical School through the Cascades East Rural Family Medicine Residency Program. It is a community-owned medical center that serves the healthcare needs of an area of approximately 10,000 square miles (26,000 km2) in Oregon and northern California. The hospital was founded in 1965 and incorporated in 1968.
Regina Holliday is a Grantsville, Maryland, resident, art teacher, artist, muralist, patient rights arts advocate, founder of the Walking Gallery and the Medical Advocacy Mural Project.
Kevin Pho is an American physician of internal medicine, media commentator, public speaker, and author. He is the founder and editor of KevinMD.com, a website aimed at medical professionals.
Roni F. Zeiger is an American physician and technologist. He is notable for his work as the Chief Health Strategist (2006–2012) at Google where he developed Google Health and Google Flu Trends. He is a co-founder of the Smart Patients project. In 2019, Zeiger announced he would be joining Facebook as the Head of Health Strategy.
Daniel Zev Sands, M.D., M.P.H., is a primary care physician, specialist in medical informatics, and co-founder of the Society for Participatory Medicine, of which he is the Board Chair.
Health Web Science (HWS) is a sub-discipline of Web Science that examines the interplay between health sciences, health and well-being, and the World Wide Web. It assumes that each domain influences the others. HWS thus complements and overlaps with Medicine 2.0. Research has uncovered emergent properties that arise as individuals interact with each other, with healthcare providers and with the Web itself.
Merative L.P., formerly IBM Watson Health, is an American medical technology company that provides products and services that help clients facilitate medical research, clinical research, real world evidence, and healthcare services, through the use of artificial intelligence, data analytics, cloud computing, and other advanced information technology. Merative is owned by Francisco Partners, an American private equity firm headquartered in San Francisco, California. In 2022, IBM divested and spun-off their Watson Health division into Merative. As of 2023, it remains a standalone company headquartered in Ann Arbor with innovation centers in Hyderabad, Bengaluru, and Chennai.
Varda Shalev is an Israeli medical researcher,a professor of medicine at the Tel Aviv University School of Public Health, and a primary care physician. She is also the co-founder and Chief Medical Officer of Alike. In 11.2022 she became a managing partner at Team8 foundry.
