Having been both an R.N. and a patient, I have experienced both sides of the lack of transparency in health care. When I first became an R.N., it seemed that all information relating to our patients was hush-hush, at least until the physician was available to chat at the bedside. Back then, we were not even allowed to tell a patient what their vitals were when we took them. “Within normal limits” was something we often cited. Now the staff will let you know your numbers the second they take your vital signs.
I’ve also been on both sides of the fence when it comes to clinical trials. As an R.N. in a teaching institute, our dialysis patients were enrolled in several different trials and part of our care was to gather data. As a patient, I was once involved in a clinical trial for a potential new medication. I have no idea how I found out about it but, once I was enrolled, I never received any information about the findings or even if the new medication went to market. That’s a shame because not only did I feel that I wasted my time, but the lack of transparency discouraged me from seeking to enroll in any other trials.
Due to pressure from patients, healthcare advocates, advocacy groups and even government officials, the healthcare industry is continuing to lean toward more transparency. There is still a long way to go, but some improvements are being made. Transparency means different things to different segments of the healthcare industry and to consumers themselves. In this particular article, I want to talk about clinical trials.
According to KNetc365, about 50 percent of clinical trials are never published and (while) they often contain adverse data for the sponsors, they may still be lifesaving for patients.
Our healthcare providers are asking us to be transparent with them. That relationship should be reciprocated. We should not feel like a captive in our own care or like just a number in a scientific experiment.
Today, more than ever, patients are seeking medical information on the web. The same is true for clinical trials. But often patients or their loved ones become frustrated because, after a long search, they are usually led down a rabbit hole and onto the clinicaltrials.gov site where information is confusing and/or difficult to understand. Many people want to enroll in clinical trials but are lacking important pieces of information:
1. If any clinical trials are available
2. How to enroll and what the clinical trial entails
3. Updates and results in language that we can understand
I think trial sponsors are equally as frustrated. Because of my experience as an ambassador with CureClick, I can tell you that many trials don’t continue because there are not enough participants to move forward. Even with social media, it’s hard to get the word out and find people who are both interested and who can qualify. Having worked as an advocate with the Alzheimer’s Association, I know this to be true for them, as well. I also think that trial sponsors have difficulty putting their findings into easy-to-understand summaries.
Doctors might be frustrated as well. According to the American Medical Association (AMA) Code of Medical Ethics, “physicians have an obligation to inform patients about all appropriate treatment options, including the risks and benefits of alternatives….” If they can’t find a clinical trial that might offer a solution, how can they inform patients?
Dedicated websites optimized for search so that they will show up in Google (or Bing, but when is the last time someone told you to “Bing it”?) are being created in order to help ease these problems. These types of websites should make it easy for the public to find trials, learn about them, pre-qualify and then receive ongoing information about current findings.
There is “a major need in the industry for a way to disseminate important, easy-to-understand information such as plain-language summaries (PLS), or respond to data requests,” says Jeff Kozloff, CEO of TrialScope, a company promoting transparency by developing dedicated clinical trial websites for sponsors.
Let’s hope that the trend towards transparency continues so that we can all gain access to the best healthcare solutions and continue to live our best lives.
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