What is PARTNERS?
PARTNERS formally links Cure JM with childhood arthritis, pediatric lupus, and juvenile myositis patients, family members, the CARRA network, the Lupus Foundation of America, the Arthritis Foundation and a quality improvement network called PR-COIN.
Our vision is to improve the lives of children with rheumatic diseases through research that matters to YOU. PARTNERS is a patient-powered research network funded by PCORI.
JOIN THE PARTNERS NETWORK
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What it means to participate in research.
Parents and patients were asked “What is one word that comes to mind when you hear the word “research”? The larger the word, the more times it was mentioned. Over 25% of parents replied with the word “hope”. This is a powerful message as to the importance of research to those dealing with these diseases on a daily basis.
Many patients do not understand what it means to participate in research. Answering a survey on how you feel or what is important to you is an example of participating in research. Other examples include sharing your health care data in an identity-protected way, suggesting research topics, helping to design studies, and helping to raise awareness of studies and their results. There are many ways to participate in research and the most important aspect is that your voice is heard!
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What is Comparative Effectiveness Research (CER)?
Comparative effectiveness research or CER is research that compares treatment choices. Which medication will work better for my disease, drug X or drug Y? What are the side effects? Patients often times have very little evidence-based information when faced with a choice between different treatments for their condition. As a result patients are forced to rely on their physician's opinion and experience using a particular medication.
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Why is CER (Comparative Effectiveness Research) important to patients?
Suppose your coffee pot broke and you needed to replace it. You can fill libraries with easy to find and easy to understand information comparing different models of coffee pots.
What are your needs (desired outcomes) in a coffee pot?
- Do you want something that keeps coffee piping hot?
- Do you need to brew many cups at a time or single-serve?
- How quickly do you want the coffee to brew?
- Are you a connoisseur and want the highest quality no matter how long it takes?
The consumer has access to a wealth of information needed to select a coffee pot, but in the health care world of selecting a coffee pot, the patient would only be able to ask their doctor for advice on which coffee pot to select.
- What if what’s important to your doctor in a coffee pot is not important to you?
- Why is there so much information available in selecting something as trivial as a coffee pot and nothing available when making the choice about which medication to use?
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How will PCORnet improve the nation’s ability to do CER?
Suppose you are a researcher and would like to compare 2 juvenile myositis treatments. How will you find the patients to ask if they would like to participate in the study? Using PCORnet, you will be able to search the identity-protected data to find the patients you are looking for.
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