How You Lose Control (Part II)


See also “How You Lose Control (Part I)” https://annecwoodlen.wordpress.com/2012/10/14/how-you-lose-control-part-i/

Okay, so Obamacare has given us information-gathering and New York State has given us Health-e-Connections, which is a Regional Health Information Organization (http://healtheconnections.org/ ). What nobody has given us—“us” being defined as we, the people—is access to our medical records that are being uploaded into the data base.

The government plan was splendid. By gathering up all your medical records and storing them in one place then when you needed care it would be one-stop-shopping for your care provider. One instance that is particularly cited is that this will keep one doctor from prescribing something that will interact badly with other drugs you’re taking. Wow! That’s sounds great, doesn’t it? You’ll be protected, safer . . .

The second justification for Big Brother gathering all the information about you is that it will save money. You go to the proctologist this week and she orders lab tests. Next week, you go to the cardiologist and he doesn’t have to re-order the same tests. He can pop open his computer and see what’s just been done. Saving money—that’s cool, right?

But what if the proctologist’s office makes a mistake and uploads somebody else’s lab results to your account?

A few years ago, I had some fancy tests done at a specialty lab. For a long time, it has been my standard procedure to get the doctor to write “copy to patient” on all lab scripts, so I got the results—actually, I got two sets of results for one test. One said I was really sick and the other said I only was sort of sick. (See “Bad Bells are Ringing” at https://annecwoodlen.wordpress.com/2010/11/01/bad-bells-are-ringing-for-me-and-my-pal/ https://annecwoodlen.wordpress.com/2010/11/02/bad-bells-are-ringing-for-me-and-my-pal-part-ii/) It took me half an hour on the phone with the lab to get it straightened out; the doctor’s office had let it slip.

So here’s the first problem: you have no way of knowing what’s in your medical records. You have no access. Your psychologist, dentist, gynecologist, laboratory and emergency department will all know everything about you. However, you will not know what they are saying to each other about you. Planned Parenthood will upload your abortion and it will be downloaded by your lab tech, that cute guy who you would like to date.

The list of participants who have uploaded your medical information into the Health-e-Connections data base is five pages long and can be found at http://healtheconnections.org/Patients/ParticipatingOrganizations. Trust me, you’re in it. Your information is out there. Remember the brief trip you took through illicit drug use five years ago? It’s there. So is the psychotherapy you got when your mom died—although it may not say your mom died, just that you were treated for depression. Your treatment for lice and the argument you had with that idiot at Upstate Medical Center—it’s all in there and available to—well, shit, everybody except you.

Health-e-Connections (HEC) covers eleven counties, basically from Canada to Binghamton and Albany to Rochester. “Over time, long-term care facilities, other health care entities, and connections to essential public health information will also be incorporated. These include potential connections with the other 11 RHIOs currently operating across New York State.” Do you really want your kid’s school nurse to know that the jerk you divorced fifteen years ago is in rehab (again)?

The patient has no access to the HEC records. You cannot look at what is being said about you. A while back I went to a fellow who was a doctor of osteopathy. It turned out that his father, grandfather and great-grandfather all had been MDs—doctors of medicine—however, this jerk couldn’t get into medical school but an osteopathic school did accept him. I saw him two, maybe three, times before I moved on. In the paperwork that I signed for my new doctor, I explicitly stated that only lab test results could be forwarded.

The second time I saw the new doctor, it was immediately obvious from the doctor’s changed attitude that he’d seen more than lab test results. I later found out that he’d seen the first doctor’s note that ‘she has a personality disorder of some kind, but I don’t know what.’ My so-called personality disorder was that—as a very nice, smart doctor would later say—I don’t tolerate fools.

This system—this Health-e-Connections—is designed to serve everybody in the medical industry except the patient. According to a source at HEC, they will begin to work on developing a patient portal in a year or two. See also Betty Petrie, special assistant to the Centro chief executive, telling the advisory council that after they get computer access for all the able people, then they will access the Call-a-Bus system for disabled people.

No, babe, you do it simultaneously. The patients, about whom all the information is being gathered, get served at the same time as the hospitals, doctors, nursing homes and therapists.

Let’s be clear about one thing: no information about you is supposed to be released without your approval. You have to sign a consent form. How many times do people in the medical system put papers in front of you, clearly expecting you to sign without reading them? Do you do it? Are you going to keep doing it?

If you sign the consent form then here’s some of the stuff that your lab tech, dentist and doctor’s secretary will know about you:

  • Alcohol or drug use problems/treatment
  • Birth control and abortion (family planning)
  • Genetic (inherited) diseases or tests
  • Any mention of HIV/AIDS
  • Mental health conditions
  • Sexually transmitted diseases

On Friday afternoon, I sat with Executive Director for Health Planning Sara Wall Bollinger and asked her if I’m in the system. She said she couldn’t access that information. The HEC system is so patient-unfriendly that I can go face to face with the executive director and still not be able to find out if I’m in the government’s information-gathering system.

Well, ladies and gentlemen, we’re going to do something about that. Do you want to join me?

About annecwoodlen

I am a tenth generation American, descended from a family that has been working a farm that was deeded to us by William Penn. The country has changed around us but we have held true. I stand in my grandmother’s kitchen, look down the valley to her brother’s farm and see my great-great-great-great-great-grandmother Hannah standing on the porch. She is holding the baby, surrounded by four other children, and saying goodbye to her husband and oldest son who are going off to fight in the Revolutionary War. The war is twenty miles away and her husband will die fighting. We are not the Daughters of the American Revolution; we were its mothers. My father, Milton C. Woodlen, got his doctorate from Temple University in the 1940’s when—in his words—“a doctorate still meant something.” He became an education professor at West Chester State Teachers College, where my mother, Elizabeth Hope Copeland, had graduated. My mother raised four girls and one boy, of which I am the middle child. My parents are deceased and my siblings are estranged. My fiancé, Robert H. Dobrow, was a fighter pilot in the Marine Corps. In 1974, his plane crashed, his parachute did not open, and we buried him in a cemetery on Long Island. I could say a great deal about him, or nothing; there is no middle ground. I have loved other men; Bob was my soul mate. The single greatest determinate of who I am and what my life has been is that I inherited my father’s gene for bipolar disorder, type II. Associated with all bipolar disorders is executive dysfunction, a learning disability that interferes with the ability to sort and organize. Despite an I.Q. of 139, I failed twelve subjects and got expelled from high school and prep school. I attended Syracuse University and Onondaga Community College and got an associate’s degree after twenty-five years. I am nothing if not tenacious. Gifted with intelligence, constrained by disability, and compromised by depression, my employment was limited to entry level jobs. Being female in the 1960’s meant that I did office work—billing at the university library, calling out telegrams at Western Union, and filing papers at a law firm. During one decade, I worked at about a hundred different places as a temporary secretary. I worked for hospitals, banks, manufacturers and others, including the county government. I quit the District Attorney’s Office to manage a gas station; it was more honest work. After Bob’s death, I started taking antidepressants. Following doctor’s orders, I took them every day for twenty-six years. During that time, I attempted%2
This entry was posted in activism, advocacy, American medical industry, Government Services, Health Care, Inpatient psychiatry, Medical care, Mental Illness & Health, physician, Power, Powerlessness, Values and tagged , , , , , , , . Bookmark the permalink.

2 Responses to How You Lose Control (Part II)

  1. ALT says:

    YES!

    Count me in. I await your instructions.

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