Two years ago we wouldn’t have believed it — the U.S. Congress is considering broad privacy and data protection legislation in 2019. There is some bipartisan support and a strong possibility that legislation will be passed. Two recent articles in The Washington Post and AP News will help you get up to speed.
Federal privacy legislation would have a huge impact on all healthcare stakeholders, including patients. Here’s an overview of the ground we’ll cover in this post:
Six Key Issues for Healthcare
We are aware of at least 5 proposed Congressional bills and 16 Privacy Frameworks/Principles. These are listed in the Appendix below; please feel free to update these lists in your comments. In this post we’ll focus on providing background and describing issues. In a future post we will compare and contrast specific legislative proposals.
Join me, in-person or virtual, on 4 consecutive Thursdays this Fall.
Together we’ll examine 250 years of history and case law, to expose what our U.S. Constitution says (and leaves unsaid) about Americans’ “right” to health care. From the Bill of Rights to the Federalist Papers, from McCulloch v. Maryland to Griswold v. Connecticut, from “Comstockery” to Sanger, and FDR’s “Court Packing,” we’ll cover it all.
You’ll learn about “penumbras” from William O. Douglas, and Due Process within the XIV Amendment; how the AMA chose Reagan as their spokesperson against “socialized medicine”, and how LBJ forced integration of hospital wards on Bible Belt states.
We’ll do a deep dive into Roe v. Wade and learn how Justice Blackmun arrived at his compromise solution for “Jane Doe” and others, and examine why Texas Governor Abbott is trying to torpedo it a half-century later.
We’ll revisit the politicization of the Terri Schiavo “Right to Die” case, and uncover “conflicts of interest” and deficiencies in “informed consent” at the University of Pennsylvania that contributed to the research death of Jesse Gelsinger.
We’ll hear the voices and opinions of students and professors, analyze Justice Roberts’ National Federation of Independent Business v. Sebelius split decision that preserved the Affordable Care Act…address mandated vaccines, and much, much more.
In just four 90-minute packed sessions, you’ll gain a perspective on the current struggle for health care in America. Most of all, you’ll learn and participate in the process. That’s a promise!
When you or a loved one enters a hospital, it is easy to feel powerless. The hospital has its own protocols and procedures. It is a “system” and now you find yourself part of that system.
The people around you want to help, but they are busy—extraordinarily busy. Nurses are multi-tasking. Residents are doing their best to learn on the job. Doctors are trying to supervise residents, care for patients, follow up on lab results, enter notes in patients’ medical records and consult with a dozen other doctors.
Whether you are the patient or a patient advocate trying to help a loved one through the process, you are likely to feel intimated—and scared.
Hospitals can be dangerous places, in part because doctors and nurses are fallible human beings, but largely because the “systems” in our hospitals just aren’t very efficient. In the vast majority of this nation’s hospitals, a hectic workplace undermines the productivity of nurses and doctors who dearly want to provide coordinated patient-centered care.
At this point, many hospitals understand that they must streamline and redesign how care is delivered and how information is shared so that doctors and nurses can work together as teams. But this will take time. In the meantime, patients and their advocates can help improve patient safety.
I was talking to a patient a few days ago who was raving about a local grocery store.
”They get it,” she said. ”They understand how to take care of their customers.”
It made me think about how far medicine has drifted away from the same idea. Ironically, despite the fact that our “customers” (people who pay us for our services) are seeking us so we can “take care of” them, we do a lousy job of taking care of our customers. It has been an obsession of mine since I started practice, but it has been something that has been increasingly difficult to accomplish. I now have to fight against the need to meet “meaningful use” criteria so that I can have time to make the record meaningful and useful to my patients. I have to fight against the need to conform to “medical home,” criteria so that I can make my practice the place my patients see as their ultimate medical haven.
The more the government and insurance industries push me toward focusing on my patients, the less time I have for my patients because of the need to meet criteria proving that I am caring for my patients. It’s a mess.
So I went back to my roots. What do I really think should be the rights of my patients? Here is a list that I made:
Patients have the following rights:
The right to have access to care when it’s needed
This does not mean the care is done in the office either. It can be done over the phone or via computer.
The schedule of the office should accommodate the patients’ needs as much as is reasonable to expect.
The right to have care that is convenient
They should not have to wait to be seen or wait on the phone to be heard
I am admittedly not an expert on health IT, but I am a firm believer in the empowerment of patients to be the driver of her/his health decision making. So this whole discussion about lab data being available directly to the patient is of great interest to me. But it does seem like yet another instance of the two sides coming together not to listen to each other but to be heard by the other side. And as well know, this works so well for any relationship!
Each side’s view is represented roughly thusly:
Patients These are my data and I have the right to access them as soon as they are available. Doctors We are worried that the sheer volume, complexity and irrelevance of (much) of the data will make it confusing and unnecessarily alarm the patient
Both arguments are valid, of course. But it is important to ask what lurks below the visible portion of each iceberg.
Let’s take the patient view. Why do I want immediate access to my data? Well, obviously, because it is mine, it represents the results of testing on my body, and the record should belong to me. I should be able to access it freely whenever I damned well please. I am also more than a little exasperated with having to wait sometimes days to hear from my doctor’s office about a result that has been available for a while, but was buried under the reams of paperwork on the MD’s desk or his/her assigning a low priority to my data. And I am most exasperated when my lab results get lost or otherwise never make it to me at all. Perhaps if I have direct and unfettered access, this will make thing more efficient for me as an individual.
The dream of reason did not take power into account…Modern medicine is one of those extraordinary works of reason…But medicine is also a world of power.
-Paul Starr, The Social Transformation ofAmerican Medicine, 1984
Today’s unveiling of a Declaration of Health Data Rights is an important action, long overdue, that represents a collaborative effort by a group of health care professionals – activists, entrepreneurs, technologists and clinicians – all colleagues we hold in high esteem.
The Declaration’s several points arise from a single, simple premise: that patients own their own data, and that that ownership cannot be pre-empted by a professional or an institution. And there lies its power, especially in the context of early 21st Century health care. It is a transformative ideal that currently is not the norm. But we join our colleagues in declaring that it should be.Continue reading…
Today’s Boston Globe ran a story (page one, no less!) announcing our grant to Beth Israel Deaconess Medical Center to run a three-site demonstration of opening up physicians’ notes to patients. That’s not just making labs, drugs, allergies, etc. available to patients – it’s giving them access to the actual notes that the physician records about a visit. Now these notes are technically available now – under HIPAA each of us has a right to our full medical records (of which physician notes are a part), but the process for obtaining them is often slow, cumbersome and even expensive in some cases. Under this project, called Open Notes, patients will receive a secure email after the note has been completed and they can see it right away. They’ll also be prompted to review the note prior to their next visit. So instead of limiting access to the very determined, access will be easy for anyone who’s mildly interested.
Why would we fund this? Several reasons, really. First, is that at the Pioneer Portfolio, we’re very interested in patient-centered innovation. Let’s face it: virtually every trend suggests that people are going to have to become much more engaged in their care and in taking care of themselves. And, as the pioneers of shared decision-making, patient centeredness, patient activation, online support groups and the health 2.0 community have shown us, real benefits come from this engagement. So much of the energy and excitement in health care today is coming from the patient/consumer side of the equation. So it’s a space where we believe we will find many innovations that can ultimately transform health.Continue reading…