I’ll tell you my secrets if you tell me yours
Who else do we share more secrets or private information with than doctors and Hospitals. We reveal embarrassing secret details about our bowel movements, urination, sex lives, emotional status, skin rashes, zits, lumps, bumps, warts, fungi, our weight (probably the most private and difficult one for me) and our own and our family’s entire medical and behavioral health histories. My goodness…there is little personal stuff that we do not share with our caregivers. On top of that we give them our protected social security, credit card (sometimes) and insurance numbers. Fortunately, our bank accounts balances remain secret, but we share what is in the accounts with caregivers. We give them all of our vital statistics and our addresses and place of work, so they can bill us and/ or come after us if we don’t pay. Then, our providers enter all of our secrets into an electronic medical record (EMR) that we trust will remain secure at the place of care and beyond (think Target hackers!). There are varying availabilities to us if we want to see what they enter into the EMR, and sometimes we have to pay for a copy of what they write about US. There are no guarantees that what they have written and shared with us is complete, accurate or has not been changed or redacted when we do get our copy. At the same time, we are asked to sign papers that give them the right to share our secrets with our insurers so they get paid. I never really saw a need for that….just send the insurers the bill and they can pay for my visit if it is a covered expense…that is all I want my insurance company to do for me, and know about me. I really don’t want them in on my secrets or controlling what my doctor can or cannot offer me. I pay them, and they pay my provider..period. In Maine, the most amazing thing is that we don’t sign anything before our secrets and EMRs are shared with data depositories. Some of it is de identified (Maine Health Data Organization) and some of it is not. We only sign papers if we REFUSE to share our private information with the largest (for profit) health information depository in Maine. That HI company turned the consent process ass end to….just to make things a little more confusing for us to understand what happens to our secrets. They came up with a REFUSAL to CONSENT form. I wonder how many Mainers realize that their very secret stuff from their electronic medical records with identifying information is being shared. There are potential advantages to this when it comes to coordinating our care. Our providers who are part of the big Health information system can access our medical records, but ironically we patients cannot! So, there is no way for us to assess if the secrets in our complete records are, first of all, OUR secrets and not someone else’s secrets, or if they are accurate, unless we do it through our doctor’s office or Hospital. And, what else are our secrets being used for? Is somebody making a ton of money on all that data collecting and by sharing OUR most personal secrets?
There is a Health Information Protection Act that is supposed to protect our privacy, but who does it really protect? We trust our providers to keep our very private stuff private, and we do this willingly so we can get the professional and personalized patient centered health care that we need. There are some things that my healthcare people know about me that I would not want shared with anyone else…it is a huge deal. Beyond information, our doctors also get to see, palpate and probe our secret private parts that nobody else ever gets to see our touch. How many have had anyone but a doctor look at their cervix? Their colons? Even our most intimate partners or spouses have not seen those things (not that they would want to)..those deeply hidden and private parts of ours. Ultimately and beyond all else, we trust our providers with our lives, particularly when we face a serious emergency, illness or surgery with anesthesia. This is by far the greatest trust there is. And we sometimes give all of that trust over to complete strangers, who may have frightening secrets of their own! Think about your first visit to a new doctor….Do you ever think during an appointment and exam “who are you, why are you asking me all these questions, and why are you doing looking up there and touching that??” Is the entire process of choosing a provider a crap shoot, because we do not know their secrets? How much can we really find out about our doctors, or Hospitals, or other caregivers before they hear, see and touch and then share our most secret things?
How many secrets do they share with us?
- Every Hospital had current up to date report cards? Real ones with a genuine grading system. They could be graded on things like HAIs, unanticipated deaths, readmission rates, medical/surgical errors and complications, Patient satisfaction, handwashing compliance rate and nurse to patient ratios. A link to any State or Federal regulatory disciplines would be also be displayed. These report cards could be displayed on a digital display or TV monitor in the Hospital lobby, and on their website. Then I would know their (quality) secrets, just like they know mine. All we see on webpages now are awards that our providers have received. I’d rather know about their actual healthcare outcomes. And if I have a specific problem, I would want access to information specific to my problem.
- Doctors had report cards too? The grades would include details about licensing agency disciplines in my state and any other State, lawsuits and settlements. Whew…that’s a lot of secrets.
- All of our own personal protected and secret data is available to us by clicking a simple button (blue button) online or with a quick phone call/request to the depository that holds it. That way we could access it on our own tech devices if we have them. Since so much of the time with my caregiver (every minute compensated for by me or my insurer) is spent with them entering stuff into my EMR, instead of comforting me, caring for, talking with and educating ME, at the very least, I should be able to see what the heck they are typing about me.
- Contact information for on call Hospital leadership displayed on patient room tv monitors. Oh my! Doctors should provide emergency contact information to patients as well. ….no more secrets! No more relying on the goodness of my nurse to contact my provider in case of emergency or status change. Don’t cut off those lifelines just because I am in the Hospital.
- They always accommodated my care partner/advocate with comfortable seating/or sleeping place, and they would be allowed in on my secrets.
- When something goes wrong, I am told about it immediately and I am supported and included throughout the process that follows. I would be regularly updated on any root cause analysis or investigation. No more secret exclusive internal investigations.
- All providers publicly reported all adverse events, and HAIs accurately, so that we consumers knew the real extent of their excellence (or lack of).
- Patients were educated thoroughly about possible complications of procedures that are recommended and told if they are absolutely essential for the treatment of their problems. This is true “informed consent”
- Hospitals and Doctors make a price lists of everything. If they can charge it, they can list it. You voluntarily tell me as exactly as possible how much my care will cost, so I am not blown away by an outrageous bill that I had no idea in God’s world I would get. That secret is downright evil. An unexpectedly HIGH medical bill may determine if or when I will sink or swim financially. It is always horrible to learn about a secret that could cost you your home.
- My proxy or I could take video of anything I want that involves my care.
- Nothing is discussed about me without me and/or my care partner.
- Providers and Hospitals would reveal if they are being compensated by Pharma or Medical Device Companies for any reason like trials or to promote their products, particularly products they recommend for me. This would include any relationships with medical equipment companies, such as surgical robots, medical monitoring devices, etc.
- Providers and Hospitals would only implant medical devices that are absolutely proven safe and carry warranties.
- Hospitals would tell us ahead of time that they will not charge patients for preventable healthcare harm, example: contracting an infection while hospitalized. This would be a guarantee of sorts, that we would get safe, high quality care, and if we did not, we would not be paying for harm because of substandard care.
- Providers and Hospitals would practice Truth in Advertising and list all of the risks for whatever procedure they are promoting in newspapers and on TV. Better yet, they would skip the advertising altogether and spend that money on keeping me safe when I am in the Hospital.
Let’s all be adults about healthcare. No more patronizing. No more underestimating my intelligence and ability to understand your special stuff…..that is just an excuse for you to keep secrets. Let’s drop the veil of secrecy that forces patients to rely on gossip and guesses for our most important healthcare provider information. There is no place for secrets in healthcare.
I want complete transparency, and accountability in my healthcare and from my providers. In return, I will trust you with my secrets, my money, and (most importantly) my life and the lives of my loved ones.
I prefer not to partner with anyone when there is no mutual secret sharing and trust.