Authors: Jeremy Rifkin
The sharing of risk between consumers and farmers creates a bond of mutual trust and fosters social capital. Moreover, eliminating all the middlemen in the conventional, vertically integrated agribusiness operations dramatically reduces the costs of the produce for the end user.
Many CSA operations use ecological agricultural practices and organic farming techniques, eliminating the high costs and environmental damage caused by the use of petrochemical fertilizers and pesticides. Energy and environmental costs are further reduced by eliminating plastic packaging and the long-haul transport of produce.
The Internet has been a great facilitator of CSA by making it easier for farmers and consumers to connect in peer-to-peer networks. Local CSA websites also allow farmers and customers to stay in constant contact, sharing up-to-date information on crop performance and delivery schedules. CSAs replace sellers and buyers in the conventional market with providers and users exchanging produce on a social Commons. In a sense, consumers become prosumers by financing the means of production that deliver the end products they will consume. There are thousands of CSA enterprises scattered around the world, and their numbers are growing as a younger generation becomes increasingly comfortable with the idea of exercising more of its commercial options in a social economy on the Commons.
Patient-Driven Health care
If sharing couches, clothes, and food touches on the more personal aspects of people’s daily lives, sharing medical data reaches down into the most intimate domain uploaded on the Commons. Millions of people are open sourcing the personal details of their medical history and current conditions, sharing information on symptoms, diagnoses, and treatments; collaborating in research to find cures; joining in support groups to provide solace, comfort, and encouragement to one another; and spearheading advocacy groups to push governments, insurance companies, and the medical community to rethink medical-health assumptions and protocols across every aspect of the health-care field. In the United States, where health-care costs represent 17.9 percent of GDP, patients are becoming
their own advocates on a giant health Commons that’s paralleling the market economy and shaking up the theory and practice of medicine.
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Health care, which was traditionally a private relationship between doctor and patient—in which the physician prescribed and a passive patient followed the physician’s instructions—has suddenly been transformed into a distributed, laterally scaled, peer-to-peer relationship in which patients, doctors, researchers, and other health-care providers collaborate in open-networked Commons to advance patient care and the health of society.
Patient-driven health care began randomly as increasing numbers of people started to search for their symptoms on the Internet to pinpoint a diagnosis of their medical condition. In the process, they came across others on the Web who had similar conditions and began sharing notes. Those who had already been diagnosed began to share their personal histories of a disease or illness on various health-care websites in hopes of eliciting feedback from individuals with similar case histories. Still others, unhappy with the treatment prescribed by their physicians, began searching for like-minded individuals who had similar misgivings in hopes of learning about alternative treatments. Individuals also began comparing notes on the side effects they were experiencing in taking certain drugs, especially if they were being taken in tandem with other drugs. People with chronic or life-threatening illnesses for which existing treatments were either inadequate or nonexistent began to band together in search of potential cures. The more activist inclined started groups to lend each other emotional and practical support and launched advocacy organizations to bring public attention to their disease and push for more public funds to find a cure.
Today there are numerous social media websites where millions of people are engaging, supporting, and aiding each other in the pursuit of advances in medical care and public health. Some of the most popular sites include PatientsLikeMe, ACOR, the LAM Foundation, Cure Together, the Life Raft Group, the Organization for Autism Research, the Chordoma Foundation, and LMSarcoma Direct Research.
Many of the patient-driven health-care sites are the outgrowths of very personal stories, often dealing with rare diseases that have received little attention and even less research into treatment and cures. Lymphangioleiomyomatosis (LAM) is a rare and fatal disease that is caused by a defect in a cellular pathway that regulates cell growth. The defect, which destroys young women’s lungs, has been associated with a number of cancers including melanoma and breast cancer.
In 2005, Amy Farber, then a student and now a member of the faculty of the Harvard Medical School, was diagnosed with LAM and was warned that a pregnancy might risk accelerating the disease. Anxious to find a treatment or cure, Farber reached out to the conventional research establishment and found that very little work was being done on this rare disease, and even then, the efforts were isolated and disjointed, with little or no attempt at collaboration. Frustrated at the lack of progress
in dealing with the disease, she contacted Dr. George Demetri, a professor and cancer researcher at Harvard Medical School who had been interested in using the Internet to link patients all around the world with the aim of tapping into their experiences and insights with rare cancers. Demetri hoped that the data might reveal a “collective wisdom” of sorts about the nature and course of such diseases that could be drawn upon to find treatment protocols and cures. The two subsequently joined forces with Frank Moss, director of the MIT Media Lab, and out of that collaboration came thelamfoundation.org, a website that allows patients to report on their health. The data in the reports are aggregated and analyzed to aid researchers in mapping out new research scenarios. This crowdsourcing approach to research differs substantially from traditional randomized controlled trials used in conventional research, which are expensive and time consuming and conceived of and carried out by researchers from the top down, with patients serving as passive subjects. The LAM site, like other research efforts on the health-care Commons, starts with the patients’ collective wisdom, which helps determine the research protocols. Moss explains that “we’re really turning patients into scientists and changing the balance of power between clinicians and scientists and patients.”
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The Association of Cancer Online Resources (ACOR), founded by Gilles Frydman, has taken the idea of patient-driven health care a step further by creating a more comprehensive health Commons where over 600,000 patients and caregivers are actively engaged in 163 public online communities. Where the LAM Treatment Alliance relied on patients reporting on their own condition and researchers creating protocols, ACOR patients and caregivers share scientific information and are co-involved in “organizing and developing new methodologies of data collection and aggregation—with the ultimate goal of guiding the research on their disease.”
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They also raise funds for scientific research. These e-patients are developing what Frydman calls a “participatory-medicine model,” which brings all the various players together in a Commons—patients, researchers, doctors, payers, medical-device companies, caregivers, drug companies, and medical professionals—where they collaborate to optimize the care of patients.
Patient-driven research (PDR) is even beginning to penetrate the inner sanctum of science. Some e-patient online communities have erected tissue and specimen banks. Others have created cell lines for testing. Still others have set up patient registries and formed clinical-trial networks.
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PatientsLikeMe, a patient-driven health-care network of more than 200,000 patients that tracks 1,800 diseases, published the first patient-initiated observational study refuting the findings of a conventional study that found that the drug lithium carbonate could slow the progression of the neurodegenerative disease amyotrophic lateral sclerosis (ALS).
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The organization reports that it “developed a novel algorithm designed
to match patients who reported taking lithium with a number of other ALS patients that had similar disease courses.”
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PatientsLikeMe tracked 348 ALS patients using off-label lithium, and found that “lithium was not having an observable effect on the disease progression of these patients.”
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Although the patient-directed trial might not quite compare to the double-blind, controlled clinical study, its speed and reduced cost make it a powerful new player in the research arena. Norman Scherzer of the Life Raft Group, a health-care Commons that deals with gastrointestinal stromal tumors, explains why many patients are migrating to the new Commons approach to research.
One of the great benefits of PDR is its speed. We can get lifesaving information out to the people who need it right away, much faster than professional researchers, who must go though many time-consuming steps. . . . This can take several years. So professional research has a built-in lethal lag time—a period of delay between the time some people know about an important medical breakthrough and the time everyone knows.
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While double-blind, controlled clinical studies are extremely expensive, patient-initiated observational studies using Big Data and algorithms to discover health patterns and impacts can be undertaken at near zero marginal cost.
Still in its infancy, this open-source approach to research often suffers from a lack of verification that the slower, time-tested professional review process brings to conventional randomized control trials. Advocates are aware of these shortcomings but are confident that patient-directed research can begin to build in the appropriate checks, much like Wikipedia does in the shakeout process of verifying and validating articles on its websites. Today, Wikipedia has 19 million contributors. Thousands of users fact check and refine articles, assuring that the open-source website’s accuracy is competitive with other encyclopedias. Wikipedia is now the world’s eighth-most-visited website, drawing millions of viewers to the encyclopedia of the world’s knowledge.
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Patient-driven health Commons advocates remind us that when Wikipedia first came online, academics argued that the democratization of scholarly research would severely compromise the high academic standards that went into compiling encyclopedias. Their fears turned out to be unjustified. The champions of patient-directed open-source Commons health research ask why crowdsourcing of research, with rigorous scientific protocols in place, should fare any worse.
Everyone’s a Doctor
There are also signs that a younger generation of doctors is beginning to align with the new patient-driven health Commons movement. Dan Hoch,
a neurologist who specializes in epilepsy at Massachusetts General Hospital, penned an insightful piece on his own conversion to the new e-patient online Commons movement. He acknowledged that there had always been an “unspoken prohibition” within the medical profession on patients getting together for fear that it might undermine the authority of physicians. He wrote, “I had the uncomfortable sense that by promoting interactions between patients and de-emphasizing the central role of the physician, I might be violating some deep taboo.”
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Hoch threw caution to the wind and decided to look into an online epilepsy support group called BrainTalk Communities—a nonprofit website community established by a colleague at Mass General, John Lester. At the time, BrainTalk hosted more than 300 free online groups for a range of neurological conditions, including Alzheimer’s, multiple sclerosis, Parkinson’s, Huntington’s, and epilepsy. More than 200,000 individuals around the world visit the BrainTalk website regularly.
Hoch was surprised to find that, contrary to his suspicion, only 30 percent of the postings were related to emotional support, while the remaining 70 percent were taken up with group members educating each other about the disease, treatment options, management protocols, side effects, and learning to cope with the disease from day to day. Of particular interest was the finding that members were continuously fact-checking each other in a process of self-correction, challenging unfounded or dubious information. Hoch said that what surprised him most of all was the realization “that an online group like the BrainTalk Communities epilepsy group is not only much smarter than any single patient, but is also smarter, or at least more comprehensive, than many physicians—even medical specialists.”
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Hoch concluded with a stunning admission:
I had been taught to believe that patients could only be “empowered” by their clinicians . . . it now seems quite clear that growing numbers of patients are perfectly capable of empowering themselves, with or without their clinician’s blessing.
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There are currently hundreds of open-source health Commons online. That number is likely to increase dramatically in the years ahead as nations begin to use electronic health records to streamline the delivery of health-care services. In 2009, the U.S. government awarded $1.2 billion in grants to assist health-care providers in implementing electronic health-care records.
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The Big Data that will be potentially available in the United States and other countries will provide a pool of information that, if used by open-source patient-driven health Commons, with the appropriate privacy guarantees put in place, could revolutionize the health-care field.
The potential of using Big Data to address health issues became apparent in the winter of 2013 when a serious flu epidemic spread quickly around the world. Google was able to pinpoint the locations where the
flu was breaking out and the intensity of the epidemic, as well as track where it was spreading in real time, by analyzing data of people’s searches for flu-related topics on Google. While subsequent analysis showed that Google had overestimated the intensity of the epidemic, in part because of widespread media coverage—especially in social media—that drew more people to flu-related searches, its tracking was sufficiently reliable as an early-warning mechanism that the U.S. Centers for Disease Control and Prevention subsequently made Google an official partner in their surveillance programs.
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