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Bioethics: Autonomy. For Me, On Behalf of Me.

By Advocate, Caregiver, Clinician, ePatient, Leader, Podcasts

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.

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Photo by Ashley Batz on Unsplash

Patient Ownership of Data?

By Advocate, ePatient, Informaticist

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

It’s not so simple – making treatment choices

By Advocate, Caregiver, Clinician, ePatient

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

Medical Residents and Safety

By Advocate, Caregiver, Clinician, Consumer, ePatient, Leader

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

Notifying me when accessing my health data

By Advocate, ePatient, Informaticist, Leader

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?

Nothing about me, Without me.

By Advocate, Caregiver, Consumer, ePatient, Informaticist, Leader
More about the work of the group OpenID HEART (Health Relationship Trust) that I blogged about a couple of weeks ago. Health Relationship Trust: interesting name – people at the center trusting the relationships in their health journey. My blog tag line is: Discovering the magic levers that impact best healthMy personal mission is: Increase the sense of balance people, caregivers, and clinicians feel as they work together towards best health.   Best health is tough enough. Relationships and trust are magic levers of best health and live at the core of people’s balance.
The electronic interconnectedness of people, their caregivers and professionals in their agencies allows our personal reach, our health neighborhoods to expand. The flow of information increases hugely. It’s wonderful: We can keep track of loved ones from a distance. We can find neighborhoods of people like us all over the world. We can communicate with our health team where ever they live.
But this information exchange comes at a price. The big business of information is the price. We have gotten away from nothing about me without me. We have most control of direct person-to-person communication (talk, snail mail, email).  Trust still matters. Will the person listening keep it to themselves?  Do I care? As more data about me is collected, who owns that data?  My control decreases dramatically. Can I share where I want? Can I correct errors? Can I retrieve data?  As automated systems for data exchange are created, can I influence the content that is exchanged?  Not just whether or when, but also what content matters to me?

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The procedure wasn’t successful, but the experience was

By Clinician, Consumer, ePatient

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.

The Muscle Cramps of the Health Marathon

By ePatient, Family man
Who does what in a health team? Who has control? How does the team deal with questions of competence and capacity. The tension between rights and safety can and often should consume a health team. Can my mother live alone? (Of course I can!) Should my brother drive? (I only drive during the day!) I don’t want to take this medicine the doctor insists I take. (It reduces your risk of stroke.)  I can go to my doctor’s appointment alone. (You never come home with the full story.) Our dad wouldn’t have wanted any of this. (He’s our dad, we should do everything possible.)

Everyone I’ve ever spoken to who is a member of a health team – as the person in the center or caregiver – has a story about decisions, control, safety, competence. They all contain frustration, emotion, and consume much energy diverting from the health journey. These are the muscle cramps of the health journey marathon.
What to do? Some of these painful cramps can be prevented with foresight, openness, and active negotiation and problem solving.  But many can not. I talked with my mother annually for more than 15 years about end-of-life decisions. It wasn’t until several years ago that she could engage. It was worth the persistence. She’s clear now and has the capacity to be clear. When capacity is already diminished, caregivers can often have trouble recognizing that persons in the center of care have choices.  In these case, caregivers can emphasize safety over choice, to the detriment of the rights of the person in the center of care. When capacity dribbles away slowly its another set of challenges. Does the person recognize that their capacity is drifting? Do the caregivers have options to ensure safety – other caregivers, safer settings? In these cases the challenges can only be mitigated through open family communication, assigning of responsibilities, persistence and presence.  And self-care. No magic bullet here. How have you faced the muscle cramps?

Test driving – Still shopping

By Caregiver, ePatient
I test drove a new neurologist this week. I’m still shopping. Two factors affected my continued shopping: no spark between us and no portal / doesn’t communicate by e-mail. The practice was cool and efficient, the physical exam was thorough. Nothing asked about me, my experience with MS, my goals, my challenges. No relationship building. I asked why I should choose this practice. “You want me to sell myself?” Nothing after that. I can’t imagine care without e-mail or a portal anymore.  I rely on it so much. Their form asked me how I wanted to receive information: what to leave in a message, who I gave permission to share information with. Impressive, butn ot enough to buy though.

On the other hand my experience with my current MS Clinic this week was different. I needed a refill on my MS medication. I sent an email to the administrative person – he’s was out of the office on vacation. The nurse I worked with has left.  I couldn’t select the covering physician because I haven’t seen him yet.  I emailed the portal’s tech support who explained the rules, but fixed it for me. Helpful IT! Then I contacted the covering MD who responded in 4 hours that he had renewed my script. And he looked forward to meeting me (I don’t have an appointment with him yet.) I think I’ll test drive him next.

Test driving and consent to share

By Advocate, Caregiver, Consumer, ePatient
This health journey I’m on can be quite a ride. Tomorrow I’ll test drive a new neurologist. They want me to bring certain information from my previous neurologist: Recent notes, medications, MRIs on CD. They can’t just go get it. Their system doesn’t talk with the previous neurologists’ system. I know I’m going to have to sign something that tells me how they will keep my personal health information (PHI) private. What does that even mean? The principle is: Individuals should be provided a reasonable opportunity and capability to make informed decisions about the collection, use, and disclosure of their individually identifiable health information. I should be able to decide if, when, or what information I want shared about me, with whom. The relevant law is the HIPAA Privacy Rule. The Privacy rule defers to covered entities (providers of care) with regard to the decision of whether to obtain an individual’s consent in order to use or disclose PHI for treatment, payment, and health care operations purposes, and with regard to the content of the consent and the manner of obtaining it. 45 C.F.R. § 164.506(b). Here’s a link to more information. I think it says that the covered entity can decide whether or not to get my consent. And what isn’t treatment, payment, and health care operations?

I don’t really care who knows anything about me. I’ve always just signed whatever is put in front of me. After all I write a blog about health and talk about my health openly.  It might as well be on a billboard. But what if I did care and didn’t want to sign? Can I say no? Will anything about my care change if I say no? What I do care about is that my wife – my health partner – and all the members of my health team have access to all the same information I can have access to. How do I pave the way for that? We’ll see what happens tomorrow.
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