This is a very short post, as I usually do not post on Saturday. Also, I have mentioned the website that I am about to discuss, in the past. So this is not really new information. Nevertheless, I came across this search page and I felt it important to share.
The webpage I’m referring to is from the PatientsLikeMe web site that I have discussed in previous posts. This webpage allows you to do a quick search for clinical trials on a whole range of diseases. As a medical technologist, it truly upsets me that people who need information fail to find it. We are living in a magical age of endless data, all up in the cloud, all waiting for someone to slap a search engine on top of it. Unquestionably, search engines like Google and Bing do an amazing job. But there still is a need for topic specific searching. And for someone with a serious illness for whom medicine has failed to find a successful treatment, a clinical trial might be the answer.
There is another website that is a treasure trove of information and which is readily available to anyone in need. This government-sponsored website is perhaps a little less user-friendly than the one noted above. But with a little patience [and the help from an Internet savvy 10-year-old], the critical information you are looking for should be obtainable.
It is unquestionably the role of a primary care physician to make sure that such websites are maximally used, so that their patients get the best that there is. Even if being accepted to a clinical trial is not an option for various reasons, the patient should be able to make that choice on their own, rather than being denied access to the information. It is my personal hope, that in time, voice recognition, computerized natural language understanding and searching will become so powerful that there really will not be such a thing as a hidden jewel of information that gets missed. We are getting very close to this, but we are not there yet.
For anyone who needs these sites, I wish you the best of health. And as always,
Thanks for listening.