Two of the key components that form the core of creating health information registries and advancing clinical research are trust and autonomy. Individuals need autonomy in order to feel secure that they control who sees and uses their health information and that is not abused; individuals also need to have trust in the overall information gathering system so that they might share their health data. Individuals that want to participate in clinical research place a great level of trust in the researcher and the governing system that is built around the health information registry. Traditionally, it is thought that an informed consent process would enable the autonomy that a participant desires. We now know that participants certainly want more than a signed consent form, and need more to be sure they are engaged in the process. Thus, the ability to set their own sharing, privacy and data access preferences gives them tools for more active engagement. Furthermore, it goes a long way to creating an environment of trust between the participant and researcher.
As individuals, we have a social responsibility to promote common good. By choosing to be a part of a health information registry each of us is contributing to better health care for everyone. When translational research advances to more participant-centric registry systems, people become a part of the solution. Individuals voluntarily share and control their health information and make clinical trials more efficient and responsive.
According to survey reports published by CISCRP (http://www.ciscrp.org/professional/facts_pat.html), 94% of the public realizes the importance of clinical research in advancing medical science; however 75% of the public state that they don’t have enough knowledge about participation process in clinical research. 57% of Americans state that they will be likely to participate in clinical research , but only 5% of Americans know where to find the relevant information. [reference so someone can go to the page, or link it to the ciscrp.org above?].
So the biggest question is how the public can get access to clinical trials effectively?
Reg4All is a unique health registry system that enables the right clinical trial to find the right participant. It is a simple web based registry system that offers you the fun of a gamified health survey where you can learn about how you compare with others similar to you. There are common health data elements as well as disease specific health data elements that you can selectively choose to answer.
Reg4All helps you take control of who can access your health information. If you choose to open an account and would like to share your health information, researchers can contact you for the clinical trials. You can choose to update your privacy settings and share your health information with selective organizations such as disease advocacy groups, medical researchers etc. You can also choose to change your sharing, privacy and data access preferences based on the availability of new research information.
Reg4All helps you to take control of your health and wellbeing and develop a relationship with researchers. Trusting the researcher is one of the primary concerns for any participant. More involvement and more transparency in the clinical research process bring confidence to the participants. Be a partner in advancing medicine and know that your participation makes a difference.
Every clinical trial may not meet the ultimate objective; however participation is valuable as compared to not taking part in the clinical research process at all. Each of us is in the pursuit of improved health and better treatments. Participating in clinical trials can give us an option to accelerate the latest advances in medical science and an opportunity to contribute to the discovery of new drugs and treatment techniques.
Whether you are a healthy individual or a clinician, or have a specific condition, be a part of the Reg4All registry and help advance personalized medicine.
Reg4All is the first prize winner in the Boehringer Ingelheim and Ashoka Changemakers contest: “Transforming Health Systems” http://www.boehringeringelheim.com/news/news_releases/press_releases/2013/10_july_2013_ashokachangemakers.html