Cystic Life is engaged in an investigation of the Medical Records Bank as a valuable research resource as well as a personal medical asset. They are looking for feedback from the CF community on the concept. Here’s the text from their e-mail call for input.
We are working on a new project at CysticLife and want to know what you think. I’ll give you all the juicy details, but if you don’t want to read and just want to know the bottom like, it’s this:
Take a quick survey to tell us your thoughts on our idea.
The Details
Imagine a tool that makes it so you can go anywhere for medical care, at any time of the day, and ensure that the people treating you know exactly how to take care of you. Imagine that same tool making it so you can directly help the medical researchers that are trying to help you and accelerate the introduction of new therapies. We are hoping to bring that tool to the CF community through Medical Record Bank (MRB).
That’s the deal – better care anywhere and faster, more efficient clinical research that will lead to new therapies. Private, secure, easy.
Let’s Change the Status Quo
The Status Quo in Healthcare
The status quo in healthcare is that reading and managing your records is not your job. The job does not belong to any specific individual in healthcare either…
Only the informed and involved patient or guardian is best equipped to secure the best healthcare and assure the best possible outcomes. One cannot be informed or involved if one does not have a good sense of what is being done to and for them; hence, the medical records and other information that are collected to reside permanently in the patients MRB account. These medical records should be read by the patient and shared with doctors treating the patient. One cannot expect doctors or nurses to treat patients within the context of the patients’ medical history if these professionals do not have that medical history. It does not help to complain that all doctors should be treating you within the context of your past medical encounters – many of them simply do not have the information resources to do so. So give them the resources they need to take better care of you.
The status quo in research
The status quo in research is that researchers must work through providers to secure medical data to study, and they must work through providers to have patients identified that might be willing and eligible to participate in a clinical study. These bottlenecks take time and money.
But it’s silly, you own your medical information, so if you want to share your medical records with researchers and want to tell them that you would like to consider participating in trials, you can. MRB can make all of this happen because it’s your tool. Bottlenecks gone. Costs go down, research is accelerated, and therapies hit the market faster.
So why work with MRB?
Every now and then in life, if we’re lucky, we have an opportunity to be part of something that can improve our lives and the lives of others. We can take a step and give something new a try. OR we can let the opportunity pass and never know if we could have done better. Disrupting the status quo to make things better is not an easy road, but it is a road worth traveling.
Will you travel it with me?
Do LIFE.
Ronnie Sharpe
Take this quick survey to tell us what you think of the idea!