Forum · A patient's duty to participate in research

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[-] mrueschman +0 points · about 2 years ago

Seth Ginsburg, Principal Investigator for the "ARthritis patient Partnership with comparative Effectiveness Researchers" (AR-PoWER PPRN) project, posted an article entitled: "Everyone Benefits From Research, But What Are Your Responsibilities?"

From the article:

PCORnet is a breakthrough for everyone, because patients are now involved in all phases of research, and that includes being privy to the results. “How we’re doing” as patients is no longer sealed in a vault of other results, and instead will be applied in real-time to the decisions we make with our doctors about how to manage our conditions – today and in the future.

If you or someone you know suffers from a chronic disease – as ubiquitous as high cholesterol, heart disorders, arthritis, sleep apnea, breast cancer, multiple sclerosis, COPD; or as rare as vasculitis, Duchenne muscular dystrophy or any of the other nearly 100 conditions that PCORnet has an interest in learning more about, it’s your duty to participate in this new approach to research. Millions of people have stepped forward to participate in key research that has gotten us this far. What will you do in order to help the next generation burdened by these diseases? Give technology a chance to live up to its promise.

We at MyApnea.Org are trying to live up to that promise and we appreciate everyone's help!

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[-] SusanR +0 points · about 2 years ago

Thanks for posting Mike! There is a tremendous amount of energy among the patient powered research networks that are working together in this new network. Seth gave an eloquent description of the potential.....of course, making new breakthroughs are only possible by everyone working together in a completely new way!

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[-] Ruby +0 points · about 2 years ago

I agree, we all need to work together in this. We all have different strengths and gifts. With that said, not everyone can participate in clinical trials. It could be an issue of needing to work, travel expenses, getting off medicines, all kinds of reasons. And no one should feel guilty about it. The past clinical trials for RLS had you going cold turkey off your meds and I am not willing to live without my meds. But there are people who can and will participate and I applaud them. Yay for you!!!!

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[-] SusanR +0 points · about 2 years ago

Hi Ruby- Good points. I absolutely agree with you. When offered the opportunity to participate in a clinical trial, each patient needs to determine if that trial is right for him or her. However, its interesting that many patients, even in the control arms, often perceive benefits by participating in a trial--perhaps because they might get closer attention and support than if they were not in a trial-but some trials are just not right or too burdensome for specific people. One of the great things about MyApnea.Org and the Network that PCORI is building is the idea that by building a good infrastructure-including an on-line community like ours- that we will be able to do better research, get faster and more relevant answers, and do so with less expense and less burden on the patient. Some of the new PCORI trials will be looking at questions such as which bariatric surgery is better, and whether antibiotic use in childhood leads to an increase in obesity risk, and will do so by simply collecting data on-line and using information routinely collected in the electronic health record. Our goal in MyApnea.Org also is to be able to do a lot of research using the on-line surveys, so we can minimize burden. Its a new paradigm for research.

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