Questions of the day--leaked documents, medical forms that lie and half naked women

1) Is the whole leaked document scandal going away? No one gets fired, no one impeached? What they seem [DoD and Sec of State and Justice Dept] to report now is that they don't know how many are out there, or how they were "stolen." And will they never address that the government lied to the American people and our allies about everything? So, they've put a poor shmuck in prison, but won't address their own crimes?

2) I had a medical appointment today. Am I the only one disgusted with the forms we sign to get medical care these days? Here's my letter to the company, and I'm not giving names for obvious reasons (I need my doctor).

"Today I was handed a clip board with a form to check for accuracy and learned that WXYZ doesn’t know my biological sex even though I've been a client since 1996 (the year it organized). That box was filled in by your staff as “unknown.” There was no option for male/female. Maybe in California that transagenda/ gender fluid nonsense goes over, but not here in central Ohio where we know the science and know the damage done to children who submit to surgery, hormones and bad advice. We also know that in the U.S. about .01% of the citizens identify as transgender, so why are you forcing their delusion on the other 99.99%?"

3) Women's arms. At the TV news desk, the men are in suits and ties, the women have naked arms; on HGTV when men are in sensible work clothes tearing down walls and installing plumbing, the women have naked arms; in the beer ads when men are climbing mountains with arms covered by shirts, women's arms are naked. Why do these two, giggling-like teenagers, FBI agents kneeling at a BLM riot have naked arms? Is this sexy? To me, all these half naked women look like they aren't ready for prime time.

Google and our health data

According to a story I watched on Fox today, we're not to be concerned that Google is controlling and distributing our health information and data--they are being HIPAA compliant. Big Whoop. What about being compliant with our wishes, with our concerns? Remember Henrietta Lacks? Did her medical information only matter because she was black? Researchers are lusting for this information--imagine having the data for 1500-2000 people with disease xyz with a key stroke instead of the 30 or 40 you can find with months of appeals and research. And cha ching, your data is part of a study which may bring the researcher/company millions.

https://www.engadget.com/2019/11/11/google-ascension-patient-records-project-nightingale/

https://www.hopkinsmedicine.org/henriettalacks/

My letter to a grant recipient at OSU

Today I noticed in OnCampusToday you’ve received a handsome grant of $2.27 million from NIH for “patient engagement.” Congratulations.  I’ve read through your publications, and you have had an impressive career. Although I don’t know what “concept map to define capacity for engagement” means, I would like to comment on patient portals as a means to engage patients in their own care.

I hate them.

My husband has 2 doctors, 3 if you count the cancer specialist whom he rarely sees, and I have 3, family, ophthalmologist and cardiologist. We share the family doctor. Each practice uses a different portal system for finding our lab results, asking questions, tracking meds, etc.  But the worst feature is their sending us advertisements! I don’t know until I’ve made the effort to get in—not easy—why I’m being contacted. What a mess! Fortunately, I don’t think my ophthalmologist uses one, because he’s the one I see most frequently. When I ask him to send a record to my family doctor, he uses a fax.

Recently we received a notice from our financial advisor suggesting we have our own “portal” for his financial services, and I fired back, Absolutely Not. Face to face is always better. I’ve not had eye-contact with a doctor since Obama imposed the horribly expensive EMR system, which had never been tested for improved care or cost reduction. One of the Emanuel brothers just thought the tech industry needed a pay off. My medical records could be transported faster by carrier pigeons from Riverside Hospital to Dr. Jennifer Bush, 2 miles away. And I hold no hope that patient portals will improve my care, at least not the ones in use by any of our doctors.

And by the way, how secure are these portals? Who designs them to be unworkable? Are they more secure than large medical practice records? Two years ago my husband’s urologist’s practice was hacked, and thousands of records exposed with all the personal data that goes along with that.

I have 9 blogs, I’m on at least 4 e-mail discussion lists, I’m on Facebook, I read a lot of medical, political, technology and religious information web sites, and I’m a retired librarian (veterinary medicine) who formerly taught classes in data base searching and information skills.  I used to teach “older learners,” which is anyone over 25.   You need a system that is easy for 80 year olds or admit this technology does not have the capacity to engage.

Norma J. Bruce

OSU Libraries faculty, retired

Hacked medical records

We are faced with reading 4 pages of "Notice of Data Incident" about my husband's hacked medical records on August 2. Name, address, telephone numbers, email, birthdate, patient ID number, SS number, account information, driver's license/government ID, medical and health insurance information and identifiers and diagnosis and treatment information. That, of course, can be linked to any other databases including the county's (even I can access a floor plan and photo of your house at the auditor's site), donations, organizations we belong to, etc. A perfect profile to be sold on the internet to create a "valid" ID for an illegal or criminal. The advice, since it's like putting toothpaste back in the tube, is to enroll in Equifax so we can receive fraud alerts and identity protection. Big whoop. Why is their information any more secure than the government's or our medical office? The advice is for us to remain "vigilant" and frequently review our credit statements. As if that's the only thing a criminal can do with this information. 

Every medical office in the country was forced by the federal government into these online systems (at a huge cost) and they don't even work well. Our information between practice networks could have moved faster by courier pigeon, and it wasn't even correct. The EMR requirement was a rush job, and a gift to the IT lobbyists with no studies done on whether EMR would reduce costs or save lives.

It also shows us how easy it will be to manipulate the vote in November.

Data mining our medical records

There wasn't a shred of research or evidence that electronic medical records included in the Obamacare pre-package would improve health or reduce costs, but the benefits to IT companies and researchers had them salivating. I just noticed this on a recent story. Did we give anyone the right to use your records for research? Probably signed away our rights to privacy without reading the small print.

"Researchers from Houston Methodist and Stanford University used computer algorithms to scour some 16 million records from nearly 3 million patients to find which of them had taken medications for gastroesophageal reflux disease, or GERD, and how many of them had heart attacks."

The duping of Americans

If you look at the rationale for Electronic Medical Records, it was always about the data (which can be massaged, sold to the highest bidder and used for policy), because its value for health had never been decided. This should come as no surprise. It's the invention of Zeke Emanuel who said, "Vague promises of savings from cutting waste, enhancing prevention and wellness, installing electronic medical records and improving quality of care are merely 'lipstick' cost control, more for show and public relations than for true change." JAMA, Feb. 27, 2008.

And now this. . . and it won’t be the only invasion of your private records.

The federal government is piecing together a sweeping national “biosurveillance” system that will give bureaucrats near real-time access to Americans’ private medical information in the name of national security, according to Twila Brase, a public health nurse and co-founder of the Citizens Council for Health Freedom.

The Department of Health and Human Services’ (HHS) Office of the Assistant Secretary for Preparedness and Response is currently seeking public comment on a 52-page draft of the proposed “National Health Security Strategy 2015-2018” (NHSS).

Read more here.

ICD-10 is part of the ACA and will be delayed again

Slipping past with all the other hoopla about ACA, the president has moved another date, originally planned for June of this year, to well beyond the elections of 2014. "On April 1, 2014, President Obama signed into law legislation that states that the Department of Health and Human Services (HHS) cannot adopt the ICD-10 code set as the standard until at least Oct. 1, 2015. This is the second consecutive one-year delay for the ICD-10 implementation and is expected to be the last such delay."

Notice the "at least."  It could be later and it's already been delayed once. How's that for planning?

Luckily, there are now codes for injuries that occur while skiing on waterskis that are on fire as well as codes for orca bites. As you may imagine, these codes will certainly streamline my ability to treat my patients with these very common ailments.

So why is it that our government and its agencies think that there administrators are well qualified to develop codes for medical diagnoses? How is it that bizarre codes for humorous and extremely unlikely scenarios are being included and programmed into the system?

If you ask CMS administrators, they will tell you that these new codes were adopted by the US government after careful consultation with coding experts, CMS administrators and physician advisers. However, I am not exactly sure which physicians were involved in signing off on codes for “balloon accidents,” “spacecraft crash injuries,” and “injuries associated with a prolonged stay in a weightless environment.” http://www.kevinmd.com/blog/2014/01/heels-obamacare-rollout-icd10.html

Free at last--from pain--guest blogger

A former colleague of mine comments on my comments on Dr. Blumenthal's 2 part series on HITECH which appeared in December in the New England Journal of Medicine. I was concerned about a number of issues, including the rush to push it through and the shaky privacy issues, but here's an alternate view of how advances in digitized health records mandated by PPACA could benefit the patient. She is now pain free after surgery and it has given her back her life, but some of her experiences in getting there were extremely unpleasant.

I thought this was an excellent article evaluating the benefits and challenges of bringing one part of American health care into the 21st century. I recommend we all read the full Blumenthal article. It's short and accessible. I took away something very different from it. It left me hopeful that things might change for the better.

Although we all rightly are concerned with the privacy of our health care data, as the article mentions, paper data is not secure either. But online data does present more challenges because no system is un-hackable. However, that's not a good excuse to stay in the 19th century forever.

My doctor's office automated their records and system a few years ago, making him an early adopter. There was slow down in the first 6 weeks, they told me, but then it got VERY efficient. When I go in now, it is faster, he knows exactly which tests are due and he prints out any prescriptions right from his laptop or faxes it directly to the pharmacy. He spends time talking to me, not flipping through paper files looking for previous test results, which are all on his laptop. I love it. He does too. After the initial few weeks of learning the new system, everyone in his office is fluent in it and very efficient.

None of these systems are developed from scratch in each doctor's office. They are turnkey systems with training provided. So the analogy of creating LCS from scratch isn't comparable.

Here's my example of why I think a state-of-the-art health care information system is desirable. Before my second hip surgery, I was in a wheelchair and in excruciating pain. I realized I couldn't keep working unless I got "real" painkillers. So I was referred to an OSU-affiliated pain clinic.

The biggest fear that pain clinics have is that patients will game the system, get painkillers from multiple doctors and sell them on the black market. This does happen. But I didn't realize that this fear made some pain clinics abuse their patients.

The waiting room was NOT filled with 20-somethings in black leather strung out on illegal drugs. It was filled with about 30 moaning elderly middle-class men and women, some in wheelchairs, some with canes or walkers, most were accompanied by worried relatives. One women was in such pain, she passed out during the wait. The office staff wouldn't help her. She said: "They do that to get sympathy so we'll give them drugs."

Her husband, who was almost shouting, had to be calmed down by other patients and we all demanded someone come out and help her into the bathroom to put cold water on her face, since not of us was strong enough to help her out of her wheelchair. They begrudgingly helped this "potential" drug abuser.

When it was my turn to be seen, the questions the doctor asked had to do with whether I was being seen by another doctor and if I was getting drugs from them too. If it had been said for my benefit to make sure I didn't overdose on a combination of things, it would have been appropriate. But it wasn't. It was an interrogation that implied I was a drug addict trying to cheat the system. I had never been treated so nastily by a doctor and I was really surprised. But pain clinics act this way because there is NO WAY TO CHECK RECORDS TO SEE IF OTHER DOCTORS are also handing out prescriptions. Finally, the doctor said he'd give me a prescription, if I passed the drug test, which was required of everyone.

So I went to the drug testing clinic he mandated. I had to be there in 20 minutes (or it was invalid), so I wouldn't have time to get a "clean" sample elsewhere. If you've never had a drug test (some states want all welfare recipients to pay for one themselves, before they can sign up for benefits), it isn't as easy as you might think.

A same-sex attendant accompanies you into a bathroom and watches you. You pee in a cup while someone watches your hands to make sure you don't substitute another sample. It was not handicap-friendly. The commode was on a platform in a small room with nothing I could hold on to easily. Because of my hips, it was excruciatingly painful. It was humiliating. I thought of the women in their 70s and 80s in the waiting room of the clinic who had to do this. It made me angry at our backward system.

The clinic said the test was a nominal cost, like $30. (Just like states say the charge will be nominal for welfare recipients, who must pay for the drug test themselves.) Turns out it was $250. I refused to pay that much and after weeks of arguing over paperwork, the price was changed.

Had there been a centralized health information system in place, this entire traumatic episode would not have been necessary. The pain clinic could have pulled up my x-rays, seen the bone-on-bone hips, seen I had no other prescriptions, and prescribed an appropriate painkiller. Instead, they were ruled by fear and lack of information. The prescription they gave me was inadequate; the surgeon said he didn't know how I managed the pain with only what the clinic prescribed me.

I, and all those suffering people, would have gotten better, cheaper, less humiliating care. The people who REALLY are gaming the system might be caught faster and punished. The insurance companies and we might have saved a small amount of time and money, but multiplied by millions of people resulted in huge savings, if there had been an investment by the government to create a unified medical information infrastructure.

I'm afraid of abuse of medical information. But that won't keep me from wanting to have a modern medical information system to allow better care, better tracing of public health concerns (like food poisonings from unknown sources), better tracking of outcomes using different types of procedures, and brings us closer to the care provided by other industrialized nations.

Do you know where you should move if you are a Type 1 diabetic? FRANCE. Because they have proven the slower speed of their dialysis treatment provides better patient outcomes and longer life. U.S. hospitals don't have a system to track outcomes, unless they do a special (costly) research study, because we don't have any medical information infrastructure. So we do what the insurance companies will pay for, which is the faster version, which results in more deaths for US diabetics than in other industrialized countries overall.

I went to my doctor years ago with what could have been either food poisoning (after eating at a new restaurant) or a flu bug. I asked him if other people in the area were coming in with similar symptoms, in case it was food poisoning. His answer: we don't have any way of knowing. They would have gone to different doctors and no information is shared. How's that for public health? We have to wait for multiple people to die to find out if there is a public health issue in an area, because deaths are reported.

I know I'm not going to convince anyone who, like the clinic doctor, is guided primarily by fear of abuse. But I believe shared medical information is vital to us as a country and as individuals. Everything can be abused. That clinic was so afraid of abuse that they were abusing people in a different way, by treating everyone as a criminal. They provided expensive, inadequate care. They had no way to track the outcome of the treatments they prescribed or even if their patients lived or died.

The only follow-up I ever received from the pain clinic was a post card a few years later saying they moved to a new address. We deserve better health care than this.

This is certainly an eye-opener, however, if patients can be abused in such a manner with face to face, 21st century care, I can hardly see EHR improving on that!

The Security of Your medical records

Your medical records weren't secure when they were paper; and they are even less so in electronic form. Any shred of privacy disappeared with HIPAA (1996, 2002). I've lost count of the number of times I've sat waiting in an exam room of a specialty clinic with the previous patient's information (including SS#) on the screen, or the name of the customer on the clip board with the number of the prescription at the pharmacy pick-up counter window. Read the small print in those privacy notices--it simply tells you who will see it--and that usually includes just about everyone you don't already know. "The HIPAA Privacy Rule allows a covered health care provider to use or disclose protected health information (other than psychotherapy notes), including family history information, for treatment, payment, and health care operation purposes without obtaining the individual’s written authorization or other agreement." (FAQ, HHS.gov)

President Obama said in his 2009 speech that electronic records for all, "will cut waste, eliminate red tape and reduce the need to repeat expensive medical tests [and] save lives by reducing the deadly but preventable medical errors that pervade our health-care system."

Nice for them. Not so nice for us, says this psychiatrist. And if you've read up on medical errors, you see that a simple 2 minute check list, if followed, can reduce many of them. She suspects (and she's been treating people for 35 years) that once patients understand that a vast audience beyond their doctor can see this at the touch of a keystroke, they'll be less forthright and honest about what to put in the record. Consent, she says, must be built into the electronic records system. Patients should be able to decide who sees their records.

"A 2009 poll conducted for National Public Radio, the Kaiser Family Foundation and the Harvard School of Public Health asked if people were confident their medical records would remain confidential if they were stored electronically and could be shared online. Fifty nine percent responded they were not confident."

Sounds good, but I think that genie popped out of the bottle years ago. Even in the 80s before any of this was possible I read stories of the information that insurance companies kept in databases, and how they traded that information with other companies, therefore a missed DUI or a "forgotten" treatment for depression somehow managed to catch up even after the life or health policy was approved. A "Do not Disclose" request doesn't mean no one sees it. And for those who think having the government in charge of this information means everything will be fair, just, and work on your behalf, I give you the new IRS agents who will be in charge of seeing that it all works on the government's behalf.

Deborah Peel: Your Medical Records Aren't Secure - WSJ.com