The Patient-Centered Outcomes Research Institute (PCORI) wants to know what health care question or decision you may be facing. Your input can help us refine our research agenda.
חולים, caregivers and the broader healthcare community are invited to complete a survey on our website to propose specific research questions. Each suggestion we receive will be carefully evaluated through a selection process that will lead to targeted announcements for research funding.
In addition to questions about prevention, diagnosis and treatment options, we’d like to know what information you need that could help us fund research to improve healthcare delivery, address disparities of all types, improve how research is communicated , or even improve the research process overall.
One example of a proposed research question is: “Should I see my primary care physician, an orthopedic specialist, or chiropractor for the best care related to my chronic lower back pain?”
That’s an actual question we received through the form.
Join us! Please take a few minutes to submit your research questions and become part of PCORI’s efforts to change the research process by making the patient’s voice a central piece of how our work is done.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit organization authorized by Congress. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.
========== FROM THE IPPF ==========
Patient-centric research is what it’s all about. Every time a pemphigus or pemphigoid patient helps with research, we all win. Tissue. Blood. Information. It is all equally important and every little bit helps. That being said, I encourage each of you to visit PCORI and ask your question to help determine which areas get funding. This is NOT an IPPF initiative, but as members of the Coalition of Skin Diseases we are excited to have a chance to help determine research avenues.
Visit http://www.pcori.org/get-involved/suggest-a-patient-centered-research-question-survey/ to ask your question and provide some simple questions.
The questions are pretty straight forward. What disease does this affect? What is your question? Who would this help? And why is it important to you?
Your research question can be simple (“How does pemphigus affect women?”) or complex (“What are the physical and emotional effects of pemphigus in Jewish women between the ages of 20 and 40?”). If you’re really feeling spunky, you can find out how to write a good research question HERE.
Thank you for all you do to further the IPPF mission!