Thursday, March 22, 2012

On ICDs and access to data

Last week my video profile went live on Stanford's Medicne X Web site. Medicine X is "an academic conference designed for everyone", including patients. It's organized by Dr. Larry Chu and the Stanford Anesthesia Informatics and Media Lab. It is scheduled to convene on the campus of Stanford University Sept 28-30, 2012.

When it comes to data, patients aren't always trusted to care for ourselves. An antiquated view. After all, we're entrusted with managing all aspects of our lives: our finances, our careers, our investments... so why is it any different when it comes to health care? Think about it.

Thank you to Dr. Larry Chu and his talented team for this beautifully shot and edited short film.


Joleen Chambers said...

Hugo Campos says what other patients have been saying: it is our information. We generated it. We paid our healthcare provider for it. It is ours. We are capable of being partners in our healthcare. With good information we can make good decisions.

Anonymous said...

I have worked for a device company for many years & prior to that worked in an Electrophysiology Lab. I will always provide hard copies of the data to patients upon request (and that actually happens more than you think). I have always answered patient questions & will show and explain the data to them if they ask. I would have no problem providing an electronic copy of the data to them if they provided the media. I strive to let the patient understand how the device & leads wires are working, how the battery is doing & any arrhythmias they might have had. And just for the record, I also have an ICD for Ventricular Tachycardia.

Anonymous said...

I am very proud. - M.Biagi

Dr vk aggarwal said...

i wish to know that in a developing country like india where lot of patients are dying of malaria ,dengue,dehyderation ,during birth of a child ,pneumonia tuberculosis , hiv aids etc & patients do not have access to consult cardilogists ,is it worth to suggest an icd to every patient of heart failure with e.f of less then 30-35% without any detectable arrythmia, irrespective of the fact as to whether he /she will be attend to cardiologist/physians for check up for other complication of heart failure?

Hugo Campos said...

Dr. Aggarwal, I do not know the answer to your question. My apologies. I'd suggest you refer to the guidelines put out by the Heart Rhythm Society:

Teresa Masters said...

Why is information about a person's body considered proprietary?
I am unfortunately now deeply involved in the Dense Breast Tissue Notification. The radiologist and my primary physician share this information every year. I was not at all aware there even was such a condition as dense breast tissue, no less the high rate of failure via mammography. The word "biopsy" scared me an a friend directed me to an alternate screening test called SonoCine. The two areas under consideration were shown to be clean, so the single fine needle aspiration would have come back clean and I would be sent home clean for another year. Thankfully SonoCine showed an invasive ductal cancer not seen on the mammogram, nor the hand held ultrasound done, and which CD's I had carried with me.
Governor Brown of California vetoed the bill last year, as he "did not want to scare women," he was also heavily lobbied to not allow it to pass. It has once again been brought forth and sits in committee, we are hoping this time to get it out and again give him the chance to redeem himself. I had the cancer surgery in 2011, did not get the breast density question answered until July 2012. I pressed and demanded to know. It is my body. I am not an automaton, I have a functioning brain, allow me to have the information and make an informed decision.
I am 100% behind your right to know. Go for it and so good to see you do have some excellent support.
Teresa Masters
Oceanside, Ca.

Hugo Campos said...

Thank you for your insightful comments, Teresa.