http://wgbhnews.org/post/patients-researchers-benefit-real-time-dataPatients, Researchers Benefit From Real Time Data
By IBBY CAPUTO
Sometimes being sick can feel like a job. Call a doctor, make an appointment, go for an exam. Lab tests, prescription refills, follow-up appointments, and don’t forget to take the doctor's advice.
As a doctor and a PhD student in epidemiology at Paris Diderot University, Dr. Thi Tranviet would know. He is studying the workload of being a patient, something he calls the "burden of treatment"- a relatively new concept but something that can affect health outcomes. "What is original in our study is that we study all kinds of patients with all kinds of conditions," he said.
As part of his study, Tranviet and his partners developed a questionnaire, but it only reached patients in Paris. He needed to reach more patients, so he turned to a new online platform called Patients Like Me, an online patient network that hopes to advance medicine through a real-time research platform.
Ben Heywood is the co-founder of the Cambridge-based company. He said Patients Like Me uses surveys and questionnaires to turn patients' experiences into quantitative data about how they are progressing.
Think of it as getting together with a community.
"If I come to the website and I’m a 40-year-old male with MS, I can find other 40-year-old MS patients and find the treatments and symptoms they are experiencing," Heywood explained.
But the website is more than a support group, it's also an open source platform for innovation. It’s like Wikipedia, where ordinary people from all over the world add to a communal knowledge base.
Eric Von Hippel, a professor of innovation management at MIT’s Sloan School of Management, said there has been research on patients solving their own medical problems. For example, of the eight medically approved ways for people with cystic fibrosis to clear phlegm out of their lungs, five were developed by patients themselves.
This type of patient-driven healthcare innovation is what Patients Like Me is designed to facilitate. On the website’s recently launched Open Research Exchange, researchers and patients alike can rapidly develop new scales for measuring patient outcomes and they can learn from each other's methods.
"That’s the open source nature of it," said Heywood.
Tranviet said the platform has helped him get more patients involved in his study.
"It took us about 4.5 months to recruit 500 participants and they were from French hospitals or general practitioner’s practices around Paris," he said.
Using the Open Research Exchange, Tranviet said he was able to recruit 400 participants in five days from English speaking countries around the world.
Though Tranviet and his team are still analyzing the data, one result is already clear. The patients who participated gave a lot of feedback on how to make the actual questionnaire more effective.
"They told us a lot of things. They said, 'You should have used this word instead of this word.' They helped us improve our research. It was very enriching for us," he said.
Hopefully, the results of the study will help enrich the patients’ lives as well.
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