Do I really want to know?
It is completely up to you, and we are all different. Some people do, some others don’t. When reading research articles, you may stumble upon upsetting information like survival rates in studies related to your diagnosis. That information may be very unsettling as well as difficult to interpret. It may be wise to take the time to consider beforehand whether you feel capable of dealing with such information, and if yes, what support you will need. Maybe you want to ask a close friend or relative you trust to process that information with you. In any case, remember that you already have a lot to process and there is no shame in not wanting to know.
Am I smart enough to read research articles?
Research articles are written for an academic public and it takes a while to get used to their format. However, with a little patience and a dose of humility, you will gradually gain fluency in reading that language. A scientific education will certainly help, but is not necessary. The goal is not to understand every single biochemical term but to extract what is useful to your case, and use that information to improve the discussions with your healthcare provider.
Will I need to study for years like a doctor?
The GiveMeKnowledge platform is not a replacement to medical studies. Its only purpose is to empower you in your contact with the healthcare system. Moreover, doctors have to study many diseases while you only need to study yours. As an educated patient, you will be able to establish a better informed dialogue with your doctors. You’ll both get more out of each other. You’ll complement each other.
Will I be able to choose my treatment?
There are restrictions why treatment is not always a choice for the patient. Some are legal depending on the jurisdiction you live in. Some are economic depending on the social system you belong to. Moreover, as you access academic research and clinical trials, you may read about treatments that are actually not available at all. Some studies may have been run only on few patients, and not be conclusive enough. Some treatments may not have been tested for adverse events yet. Therefore, the information you access here is to be seen as a support to improve the discussions you have with the healthcare system.
Can I enlist any clinical trials?
No. There are restrictions there too. You and/or your doctor will need to contact the trial coordinator and your social system to find out.
What has this not be done before in a bigger scale?
The short answer is that not enough people have been requesting such a service. Patients have long considered themselves and been considered as passive objects in the setup of our healthcare system. Research results, even when funding by tax money, are not always publicly published. Healthcare results are not made publicly available. In many cases, patients cannot even access their own health records. Lately, a growing movement of patient empowerment has proven the extraordinary benefits of having patients, doctors and researchers working together as a team. However, a lot of work remains to be done in order to make self-evident the involvement of patients in their own care. GiveMeKnowledge is, at best, just one little piece of the puzzle.