We’ve all been there. In our role as a patient, caregiver or healthcare professional, we have had questions when trying to make a healthcare decision — but haven’t been able to get a good answer. The problem may be a lack of research, or that the results of a particular study just aren’t clear or meaningful to our particular situation.
The Patient-Centered Outcomes Research Institute (PCORI) was established to help bridge this gap – to fund research that addresses questions for which patients don’t have the answers they need, so they, and those who care for them, can make better-informed health and healthcare decisions.
Here’s where you come in. We want your help to determine what PCORI should study – and we’re asking you to tell us directly through our website.
We’d like to get a better sense of your health and healthcare questions. We’ll use what you tell us to help identify and select some of the specific questions that we’ll fund researchers to study.
You can submit the specific research questions you’d like us to think about funding by filling out a simple form on our website. We’ll carefully consider each one and how it might fit within our portfolio of patient-centered research.
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 that will improve health care 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 might be: “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. This and other suggestions we receive will be carefully evaluated through a selection process that will lead to targeted announcements for research funding.
Join us! Please take a few minutes to submit your research questions. Be 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.
Rachael Fleurence, PhD, is one of PCORI’s scientists.
Susan Hildebrandt, MA, is PCORI’s Director of Stakeholder Engagement
Sue Sheridan, MBA, MIM, is PCORI’s Acting Director of Patient Engagement
2 Responses to “Which Health and HealthCare Questions Can PCORI Study to Help You? Tell Us”
Leave a Reply
Why is “informed consent” allowed to be so convoluted? It is anything BUT consensual, and more often than not, lacks digestible information.
While we can rarely understand it’s contents fully, what is plain to see is that it’s first and foremost a “CYA” document designed by scientists and lawyers. I question whether even their own colleagues (in either category) would be able to decipher true meaning. Does it bother no one that this document is nothing more than glorified mumbo-jumbo? And it’s only getting worse!
Why is informed consent left to the devices of those whose skill set lies outside the realm of communication. Current practices are rather counter-intuitive. Neither scientists nor lawyers have communications skills that translate into common lexicon. HELLO!
I have asked study coordinators, PIs, IRB staff, and federal employees in relevant agencies. The buck, I’ve heard, seems to stop with “an act of Congress.” Literally.
Here’s an idea: Turn the tables. In an interactive, face-to-face workshop, let’s ask scientists, lawyers, IRBs, and legislators to blindly sign up to participate in one of a selection of different mock clinical trials. And their selection has to be based on consent forms they sign. Their knowledge and understanding can be tested, and then what they’ve agreed to revealed to show them what they REALLY signed up for. Potentially eye-opening, yes?
File this under the banner of “We can SHOW them better than we can TELL them.”
Help me keep up as I ask questions, submit requests, and follow-up on the responses from my large HMO. My HMO is so big, they say they provide a service, but some things only exist in California, but not in Colorado. My HMO has gotten so big, they have lost accountability. Several years ago with the same physcian’s group, but a separate organization, this alined group was more responsive to consumers operating in Seattle, Washington. They was more patient responsible/focus with advisory groups, but not in Colorado. In Seattle they explain thing with the patient in mind, in Colorado, you get a medical professional explaining the HMO’s perspective. Where’s the accountability? The HMO is so big, they have lost the ability to coordinate between departments. It takes them months to let you know when you have met your deductible. and this is after you tell them and they tell you we need to do audit. After three months they start to charge you again, stating you no longer have met deductible, because an office visit was incorrectly coded, and it took more months to remove the bill, but they never sent a confirmation of the correction, they are too big, they don’t need to. This large HMO, as they updated their technology, they lost my medications, removed all billing and EOBs from the web site, and it all ok. I filed a formal complaint, and found out this HMO seldom responds, guaranteeing those that file a complaint with the HMO, won’t follow up on in in a timely manner. Is their some type of software that can help the consumer track the questions and services that one is trying to obtain or explain from this large HMO? I’m two years out from medicare, and this large HMO is the highest rated in my area of Colorado, and I read recently the HMO got a large state contract in California. I don’t know why I would go with them, if the consumers spends more time trying to get an office visit correctly coded and billed, and to verify the EOBs and bills. I probably spend three times the amount of time trying to get their inoperable systems corrected, than I ever consulted with a primary doctor. With the 15 minute appointments I consulted 25 providers in this large HMO, and still trying to get establish with a provider that I trust. Help, as a senior with multiple issues and over 23+ medications to coordinate, I’m lost in the system. Help me identify tools where I can track my care, while I still have my cognitive abilities. Sincerely, Sandra