A Foundation for Evidence-Driven Practice A Rapid Learning System for Cancer Care: Workshop Summary (2010) / Chapter Skim
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5 Patient-Driven Rapid Learning Systems
5 Patient-Driven Rapid Learning Systems
Pages 41-48
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From page 41... ...
"As we are thinking about generating knowledge, it is really prudent for us to think about the knowledge needed by the patient, and what the patient can help us learn," he added. Wide-scale use of the Internet and social networking sites and tools by patients has also fostered the rapid gathering and spread of information about various conditions, explained Susannah Fox, associate director of digital strategy for the Pew Internet and American Life Project.
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From page 42... ...
This information technology is enabling many different ways for people not only to consume information about health and health care, but also to contribute information, Fox said. The Pew survey revealed that 52 percent of Internet users watch videos online, more than one-third share online photos, including X-rays and other medical graphics, and one out of five Internet users with cancer uses social network sites.
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From page 43... ...
Such data collection includes postmarketing self-reporting, as well as group-wide data collection with an emphasis on adverse event reporting. For example, the International Myeloma Foundation used ACOR's myeloma and breast cancer listserv to conduct a survey, whose results it used for a ground-breaking postmarketing study on bisphosphonates and necrosis of the jaw.
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From page 44... ...
There are no approved drugs for this condition, which is generally resistant to chemotherapy. With only 300 new diagnoses per year in the United States, and 20 isolated researchers studying the condition, the main barrier the Sommers found to making progress on the disease was a lack of communication, collaboration, and coordination among stakeholders, including patients, researchers, physicians, scientists, and industry, resulting in scant evidence of progress against this rare condition.
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From page 45... ...
To further research, the Chordoma Foundation is creating a systems approach featuring a centralized chordoma biospecimen bank and patient registry that links ongoing, prospectively collected patient data to biospecimens that researchers can use in their studies. The Sommers are in the process of finalizing a contract with Ohio State University to house the biobank, which will operate on the caBIG platform (see Figure 5-1)
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From page 46... ...
PatientsLikeMe has created new computer analysis tools that can provide personalized predictions, based on the wealth of multivariate patient data collected on its site that are matched to individual data entered into the system by the patient requesting such predictions. These analyses strive to control patient selection bias in their careful matching process, which compares, for example, ALS patients taking the experimental treatment lithium with those ALS patients on the site who opt not to take the drug, yet have the same disease onset time, degree of disease progression, age, and so forth, as the treated group.
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From page 47... ...
"So not only have we begun to deliver meaningful answers ahead of time, but we have changed the expectation for the trial community to deliver data to the patient community," he added, noting that the negative clinical trial study results were never published. PatientsLikeMe is doing similar studies of patients with other disorders such as leukemia, Parkinson's disease, and multiple sclerosis, and Heywood urged the medical community to fund the infrastructure needed for these observational research endeavors.
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From page 48... ...
chordoma patients are represented in the Chordoma Foundation database. Heywood noted that "there is a minimum scale of about 500 patients that we find needed to get an effective dialogue going, and there appears to be a ceiling of about 11,000 to 12,000 patients within a single community that we need to figure out how to break through with our current information architecture." Heywood implied that the high degree of dialogue that occurs on some sites limits the number of people that can effectively participate in them.
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