The rise of citizen scientists and patient initiated research

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Whether you call it Health 2.0, Medicine 2.0, or e-Health 2.0, the Internet is changing medicine in ways that challenge the status quo. This article explores how a group of amateurs who call themselves “health hackers” and “citizen scientists” are trying to use the Internet to connect with other patients, run experiments, and conduct clinical trials on their own diseases.


Dr. Gunther Eysenbach states “Medicine 2.0 applications, services and tools are Web-based services for health care consumers, caregivers, patients, health professionals, and biomedical researchers, that use Web 2.0 technologies as well as semantic web and virtual reality tools, to enable and facilitate specifically social networking, participation, apomediation, collaboration, and openness within and between these user groups.”


One review examined 46 different definitions of Health 2.0, and Eysenbach’s definition does not emphasize a key component of the concept: amateurs can use these new Internet tools to do work that in the past was only done by professionals.


A dramatic example of patient-initiated research highlights the moral and medical implications of changing the way that traditional scientific research is conducted. In 1995, Jeff Getty, a late stage AIDS patient and AIDS activist, was the driving force behind personally receiving a xenogeneic baboon bone marrow transplant with the hope that the baboon’s natural AIDS resistance would save his life.


Although the baboon marrow cells did not grow in his bone marrow, Getty seemed to improve and lived until 2006 when he died of heart failure after treatment for cancer and AIDS. AIDS patients were among the first to self organize, review the scientific literature, choose treatments, and demand research.

An abstract at the 1996 International Conference on AIDS stated that the Getty experiment discovered that “aggressive patient involvement from the earliest stages of scientific investigation can aid cutting edge research; regulatory obstacles can be overcome and the research process can be expedited.” Dr. Steven Deeks of UCSF who led the Getty experiment stated, “Jeff was just hanging on to his life. He inspired us that a risky and aggressive intervention was worth a try.”


Others worry that patient-initiated research may not generate scientifically valid conclusions about treatment. Harlan Krumholz, a cardiologist at Yale, is supportive of individual patients learning about what helps them cope with their disease, “but to find something that I can put in a textbook and encourage everyone to offer to patients requires a stronger evidence base.” Citizen scientists may not collect data rigorously enough or may not understand how to interpret statistically reliable results. The complex rules governing bias, conflict of interest, informed consent, access, and privacy that Institutional Review Boards (IRBs) insist that academic researchers follow do slow down studies.


But, these rules also protect patients from receiving treatments like bone marrow transplantation for advanced breast cancer and thalidomide for nausea that harm patients.

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