I attempt to keep my paper data organized with folders.
Sharing patient data is a hot topic right now. With HIPAA being misunderstood by many people and the fear of privacy being violated, most people cringe at the thought of releasing their health information to others. What if I told you that by donating your data and remaining anonymous, you could potentially save the lives of other people? In the rare disease community, this is how many people think. If you don’t think this way, I’m here to tell you why you should.
You might come across another patient’s data that could help your doctor make a treatment decision for you. I have volunteered my health data, especially in regards to CBC info with the amount of prednisone I was taking and various blood test results to other patients and doctors. The outcome has been overwhelmingly positive. Other people have been able to use Rituxan and achieve a temporary remission because of it. On the other hand, it has also helped other ITP warriors decide that Rituxan wasn’t the right choice for them, and they picked another treatment that has been working. It also helps their doctors, some of which don’t see many ITP patients. For the rare community, information is key!
You never know who might look at your data and see something others have missed. Think about all the doctors and healthcare professionals you had dealt with that got it wrong. I have lost count in 11 months, I can’t imagine what it is like for some of you who have lived with a rare disease for decades. We often hear stories about a doctor stumbling upon information and changing a diagnosis for a patient. This could happen to you or someone else just because of your data! It also opens doors for researchers to potentially find a missing link for drug and device development. I believe the more eyes looking at the problem, the better. Rare disease patients have few answers and even fewer participants. Anything we can do to help the people who help us can make a positive impact.
You are breaking ground for a new era in medicine. Times have changed since HIPAA was enacted. Rare disease patients are connected via social media from all corners of earth. We are using our voices to advocate for change, and our data is no different. It speaks for us when we are unavailable, it tells a story. By offering your data, you are fostering the development of a fantastic opportunity to engage with doctors, researchers and pharmaceutical companies. It is laying the groundwork for a future network of open-access to data that can blaze a trail for research. For the rare community in particular, it opens the door for new doctors and researchers to become interested in our conditions. Many people walk into medical school interested in various fields of medicine. Imagine if they became interested in what YOU are fighting!
Keep an open mind on sharing your data. Don’t be afraid to ask if you will remain anonymous, especially if you worry about your privacy.