Bioethics, the term first coined by someone (who is a controversy) in 1971, includes four principles – respect for autonomy, nonmaleficence (do no harm), beneficence (for me, on behalf of me), and justice. Ken Goodman spoke about two of the four principles autonomy and beneficence. As with much when you start peeling back the layers, bioethics are not simple, not black and white, rather shades of grey.
Do you care about health data ownership and want to stay abreast of national initiatives to wrestle with and solve ownership issues? If so, this post is for you.
What does it mean to own my health data? Is it like owning my car or my house? Is it like a copyright? Do I own it by myself or do I share ownership with the people or systems that enter the data (my doctor, the lab, my care partner) or store the data (the electronic health record, the app, the device)? Is it ownership or is it a right, like a civil right? I confess that I know this is important, even critical, but the more I explore, the less I feel like I understand.
Much to my surprise, I was invited to attend a National Academy of Medicine (NAM) Digital Learning Collaborative meeting about Patient Ownership of Data. Participants included stakeholders from EHR vendors, government agencies, hospital and medical practices, insurance companies, patients (I was one of several), and others. See a summary here. The meeting sought to explore several questions (paraphrased by me): Read More
We (patients and clinicians) need all the help we can get making informed health care decisions. We need the right information to the right person, in the right format, through the right channel, at the right time in our life flow and workflow – The five rights. Let’s take managing acute pain as an example. Clearly, we need to make some decisions together. I (the patient) am in pain for whatever reason – hurt my back, migraines, colitis, sickle cell, a million reasons. I (the clinician) need to help my patient manage that pain with the least long-term risk possible, e.g. relief with maximum function without addiction, constipation, confusion, whatever. This pain could be new – never had it before, or familiar – chronic (we have experience with what works and what doesn’t). Clinical decision support can help us to structure and inform a routine to make choices based on research and clinical and life experience. What has worked for groups of people (those with acute back pain, migraines, colitis, sickle cell) and what has worked for the individual (me or my patient)? We can welcome this decision support when symptoms first occur, when the patient and clinician first communicate, when they first meet about the symptoms, or as we try treatments until the pain goes away or is manageable – anytime from first pain to living with pain to no pain. Read More
Listening to an article on Morning Edition this week, Is It Safe for Medical Residents to Work 30-Hour Shifts? A study has begun randomly putting some residents in 30 hour shifts and others in 16 hour shifts to see if there is a difference the proportion of patients who die within 30 days (can’t believe I’m writing that, but the outcome being measured is 30 day mortality, really). In 2003 a law was passed limiting residents to 16 hour shift maximums. Hospitals want to go back to 30 hour shifts because the 16 hour shifts are more expensive. A concern is that 30 hours is too long and dangerous. As a young emergency and intensive care nurse I found 12 hours to be my limit. Read More
Why don’t I know when someone, something, anyone accesses my personal health data? I get emails from Apple, Google, my banks, credit cards, Facebook when someone attempts to get access to my financial or social media accounts from a different computer or browser than one I’ve authorized. My bank proactively let’s me know when they suspect fraudulent charges. But I have no idea when someone opens, adds to, corrects, uses, sells my health data. I’m pretty much an open book, even pathologically open. After all, I blog about anything. I still would like to know who’s using my health data. If I knew I may be less open. I may still not care. I know data is big, big business. Social media data, Amazon data, health data. It can’t be because it’s not technically possible or too complex. I don’t think I want to interfere with that big business (why try?), but it doesn’t interfere for Facebook or my bank to keep me posted, so why would it interfere for my health data. If the federal government is paying billions to support the electronic health data business through meaningful use incentives, why don’t they require that we be notified of our health data use? Health data sources (hospitals, insurance companies, researchers, etc) spend millions if not billions to prevent hacking, yet hacking occurs regularly. More than 30 million records hacked a year! It takes a long time for companies to discover hacking – often not until thousands of files are hacked. Seems like I could identify health data hacks sooner and then tell the entity that’s hacked.. Wouldn’t I be flooded with notices every time I went to the doctor or went in the hospital? Not if I could authorize access and permission and even assign other people, clinicians, and hospitals to authorize on my behalf. My authorizations could be stored on a server accessible to me and accessible to those wanting to exchange my data. I could go to it to track authorization, change what I allow to whom. What would take for government and industry to want to accomplish this? Is there a threshold of hacking or fines? When I review the literature, little discussion occurs beyond better encryption, more rigid password protection. Why not? Does this matter to you?
I went to Beth Israel Deaconess Medical Center in Boston Friday for an outpatient invasive procedure. Pretty amazing. A well oiled production, well-informed, with amazing service. Upon arrival my wife and I received a pager to signal us when the prep nurse would be ready for us. We sat in an area asking us not to eat there to respect people who were NPO (nothing by mouth) while waiting for surgery. In 10 minutes we were called into the OR prep area and told what to expect while we were being prepped for the procedure. They had plastic tents labeled H&P (history and physical), OR consent, Anesthesia consent, site identification, medication reconciliation. As they completed each one, the tents were moved from one side of the table to the other. I was asked which side my procedure was going to be on, what was the procedure I was having (in my own words), I got a bracelet with my ID, one with my allergies, and one on the side of my surgery. The consents were in Plain English, were explained to me, time given for questions. Very smooth, quick, but didn’t seem rushed. During shift change, the hand-off was complete, verbal, and included me. Everyone was amazingly pleasant and personable except one person (who stood out in such contrast). This continued for all nurses, technicians, physicians, and assistants. The surgeon called my wife on her cell phone after the surgery to tell her everything. My instructions were clear, written, and repeated several times. I received a phone call the next morning to ask how I was doing and see if I had any questions. The procedure was not successful. I was so disappointed, but the possibility had been explained to me. The experience was a success. We’ve come such a long way over the years. Thanks all.