The SCAD ladies set an example

John Novack, from Inspire.com, a place that organizes online patient communities around various diseases and conditions, sent me this link to a great online report entitled, "The SCAD Ladies Stand Up: Stories of Patient Empowerment."

From the introduction: 

The “SCAD Ladies” story is an extraordinary one: women with a rare heart disease self-organized online and began studying their disorder. This patient initiated effort led to physicians at the Mayo Clinic launching new research to learn more about spontaneous coronary artery dissection (SCAD).

The first essay is by Sharonne Hayes, a Mayo doctor, who notes:

Enter “patient-initiated” research. Still in its infancy, this may prove to be the new “gold standard” for the study of uncommon medical conditions.

It stands to reason that the people most highly motivated to support or to even initiate investigations of a rare condition are those personally affected and their close relatives. Our experience with the “SCAD ladies”, Katherine Leon and Laura Haywood-Cory and their online “heart sisters”, provides an example of successful patient-driven, social networking–enabled research. Our pilot and ongoing studies demonstrate that if a large organized group of patients self-identify and present themselves to researchers as study participants, a major barrier to rare disease research can be eliminated.

Delivering a patient-prioritized research agenda to potential investigators, as was done by the SCAD group, also may serve as an incentive for busy clinician-investigators and help convince them to commit to a new line of research or to this unfamiliar study methodology. Many organized patient advocacy groups have developed research agendas. However, the highly engaged and committed women who prompted the SCAD study, linked only via the Internet, demonstrated levels of sophistication and specificity in their patient-initiated research questions that were on par with those developed by formally organized groups. They had clearly done their research, and as a result, allowed this researcher to more clearly visualize the potential of success.

Check out the other essays from patients, which follow in the report.  They are well worth reading.

We will spend many years dying

Here is an excellent post by Janice Lynch Schuster on Disruptive Women in Health Care.  The occasion was Steve Jobs' death, but she draws broader lessons.

Here's the one that struck home most to me:

For many years now, I’ve written on this subject with Dr. Joanne Lynn, a geriatrician and hospice physician. In our book, Handbook for Mortals: Guidance for People Facing Serious Illness, we talk about the living with/dying of conundrum. Americans like to talk about “the dying” as if they were a different sort of person, in contrast to the rest of us, whom Joanne characterizes as the “temporarily immortal.” Once someone has been labeled as dying, we expect him or her to go about the business of doing just that: taking to bed, saying farewells, making peace with God, signing up for hospice, giving up daily routines and purpose. We think of the dying as a distinct group, with different interests, and an entirely different role to play in this life.

The fact is, for Boomers like Jobs, we will spend many years dying of something. Nearly 80 million of us are aging together, and along the way, we will accumulate illnesses of old age: heart disease, cancer, and Alzheimer’s. Thanks to modern medicine and public health, we will live for a long time with what have become chronic conditions. Where these diseases once killed swiftly and uniformly, they are now chronic conditions with which we live—and from which we die.

Bravo to Brent James

Dr. Brent James last week was awarded Columbia Business School’s W. Edwards Deming Center for Quality, Productivity and Competitiveness. As described in the press release:

The Deming Cup grew from the center’s drive to highlight the achievements of business practitioners who adhere to and promote excellence in operations – the Deming Center’s area of focus. This award is given annually to an individual who has made outstanding contributions in the area of operations and has established a culture of continuous improvement within their respective organization.

Dr. James was recognized for his pioneering work in applying quality improvement techniques that were originally developed by W. Edwards Deming and others, in order to help create and implement a “system” model at Intermountain, in which physicians study process and outcomes data to determine the types of care that are most effective.

Imagine that, improving clinical care is consistent with efficiency in the health care system.  This has to be another lie, just like that stuff about Pronovost saving lives and reducing costs by reducing the rate of central line associated bloodstream infections.  Or assertions by that trio of fraud, Spear, Toussaint, and Kaplan.

This stuff can't be true.  If it were everybody would be doing it.  Right?

Back on January 15, 2009, I published a post entitled "What does it take?", in which I expressed frustration with the slow pace of process improvement in hospitals.  What followed in the comments was a virtual seminar by some of the country's leaders in the field.  They are still worth checking out.  Brent offered his point of view:

Paul, you have put your finger on what I regard as THE core task of the present generation of the healing professions. It is very clear that we are in the midst of a transition. The term of art that is usually used to describe the present state – and which Don Berwick so eloquently explained (at least, at the level that an individual physician would experience it) – is “the craft of medicine.” It’s the idea that every physician (or nurse, or technician, or administrator, etc.) is a personal expert, relying primarily on their personal commitment to excellence. In a very real sense, every physician occupies his/her own universe, with its own reality, truths, physical constants. As a physician I might say to a colleague, “What works for you, works for you. What works for me, works for me. Let’s both stay focused on the patient – our core fiduciary commitment to put the patient first in all things – and that will guarantee the best possible results.”

David Eddy said it most eloquently: This core assumption of the craft of medicine is scientifically untenable.

As a direct result of some solid research around this fact, the healing professions are in the midst of a major sea-change, a once-in-a-century shift: We’re moving from “medicine practiced as individual heroism” to “medicine as a team sport.” The kinds of tools you’re talking about make perfect sense in a team setting, but almost no sense within the craft of medicine.

Don is right in calling it culture change. However, we are well past the tipping point. There is strong evidence that the professions have committed to a new course and are actively moving. It’s the difference between 5% of the profession “getting it” (where we are now), and moving to a point where it is standard, accepted, background business essentially all of the time.

The key change concept was perhaps best expressed by Winston Churchill: “People like to change; they just don’t like to be changed.”

I am also deeply impressed by Roger’s classic text on change: Diffusion of Innovation. He describes bottom-up change, by sharing results (both data and word of mouth) from initial thought leaders (his “early adopters”). That has worked very well for us, and makes the change fun – rather than something that a bunch of external “know nothings” are trying to do to you. 

You only have three seconds

In my continuing occasional series about entrepreneurs, I present this gentleman, a shoeshine guy at the corner of Sixth Avenue and 47th Street in New York City.  Street vendors often engage in hawking to attract business, but this fellow is a master.  As people walk by, he turns from the current customer's job, makes eye contract, and offers a pithy phrase that is meant to draw business.

"When are you going to do something about those shoes?

"Don't you love her?  What about those shoes?"

"Are you selfish?  Think of those shoes."

When I remarked on how effectively he segmented the market, (i.e., how well he seemed to understand what would work with different folks) he said, "You only have three seconds to make a connection."

It worked on me.  As I walked by, all he did was to shake his head from side to side and say, mournfully, "Those shoes . . . ."

addiction treatment advice

addiction treatment advice

Entitlement or naïveté?

I make it a practice of saying, "Yes," to any student or young professional person who wants career advice.  This serves two purposes.  One is to provide (hopefully) helpful assistance to someone starting his or her career.  The other is for me to be rejuvenated by the energy and idealism of the next generation of community leaders.

This week, a person who is involved in health care consulting at one of the big firms sought advice about how to move from that environment to a job "somewhere in the provider-payer space."  (By the way, I hate the term "space" when it is used in this manner, but I have learned to expect it from consultants and venture capitalists.)

The person thought that the ideal job would be to join the internal strategic planning group in a large academic medical center.

I advised against this.  I pointed out that such groups are often marginalized in AMCs.  They tend not to be respected by the doctors and nurses, because they are viewed as not understanding the obligations, work flows, and other issues associated with delivering clinical care.

I suggested, instead, that this person seek a "line" job in a hospital, helping to run an ambulatory clinic or some other operational role.  "Learn what it is like," I said, "to organize how care is delivered, dealing with nervous patients, stressed out nurses, and doctors with strongly held views.  Over time, you will demonstrate good work and initiative and how make changes.  Based on that, you may be asked to participate in task forces that help set the strategic direction for the hospital.  By then, too, you will be known and respected by clinicians and therefore less likely to be marginalized."

The response was firm and immediate: "No, I don't want to do that.  My salary would take a cut, plus I want to be involved at a higher level in the institution."

I was struck by this.  Just a short time out of MBA school, followed by a stint as a consultant, this person was confident s/he would provide value in the corporate planning function of the most complicated type of business in the world.  Whatever happened to the idea of starting low, learning what life is like on the front lines, demonstrating ability, and working one's way up the ladder?

Instead of being rejuvenated by the energy and idealism of someone in the next generation, I felt like I was facing an overabundance of entitlement.  Perhaps, though, I took it the wrong way.  Maybe it was just naïveté.

Texas-sized shoot-out

It has been some time since I reported on the Parkland Memorial Hospital saga.  A new article about things in Dallas draws us back to events in Texas.

Here's the title: "Ask the Editor: DMN Managing Editor George Rodrigue responds to accusations from UT Southwestern's Dr. Daniel K. Podolsky".  Here's the link.  Here's the lede:

Our Sunday story on patient safety indicators among Texas’ larger hospitals drew a rather heated response from Dr. Daniel K. Podolsky, president of UT Southwestern Medical Center. His University Hospital-St. Paul finished rather badly in the standings, and Dr. Podolsky accused us of cooking the books. His theories are incorrect – we played it straight, and we included all the necessary caveats about the limitations of our data – but maybe, if you care about journalism or health care, you’ll find our dialogue to be an interesting debate. As usual in these cases, we’ve printed Dr. Podolsky’s full comments below, along with our response.

I am sure that public relations consultants across the country are viewing this as a case study in media relations.