They'll be godmothers to thousands: Pulse oximetry for newborns

On Oct. 13, Kathleen Sebelius, the Secretary of the U.S. Department of Health and Human Services, sent a letter formally recommending that hospitals perform pulse oximetry screening of newborn babies. This followed the formal recommendation of the Secretary's Advisory Committee for Hereditable Disorders in Newborns and Children, which had met a month earlier. Pulse oximetry is performed via a painless clip (imagine a soft clothespin) on the baby's foot, to measure the oxygen in their blood.

Sebelius' recommendation was made on the ninth anniversary of the death of Mary Ellen Mannix’s son, James. Mary Ellen has become an influential patient advocate since then, and participates on the advisory board of the (newly born) Newborn Coalition.

The Newborn Coalition and the mission to get pulse oximetry as a recommendation on the SACHDNC were spearheaded by Annamarie Sarinaan. Annamarie's daughter, born with a heart defect, got good, error-free care, and survives.

Bravo to Annamarie and Mary Ellen, who will soon become virtual godmothers to the babies who will be healthier as a result of their work!

Advice: Forward this to your friends who are expecting a baby, and have them send this to their obstetricians.

I was one of 99: Hepatitis from injections

Evelyn McKnight's story:
In over 45 known outbreaks during the last twelve years, patients have been the victims of syringe re-use. I was one of 99 Nebraskans infected with hepatitis C in 2001 while receiving treatment for cancer. Syringes were reused, and a saline bag was misused. And ours is not an isolated incident. Over 150,000 Americans have been notified during the last decade that they have been put at risk for infection while receiving medical treatment. Infection control by ambulatory surgery centers is described by Dr. Melissa Schaefer and her colleagues in an article this month in the Journal of the American Medical Association.

Our research led me to discover inadequate level of protection for patients caused by widespread failure of health care providers to follow fundamental, basic injection safety practices. Astonishingly, these unsafe practices continue.

We started the HONOReform Foundation in 2007. Our vision is a nation in which health care providers always follow fundamental injection safety practices that are designed to protect all patients each and every time they receive an injection.

We are pleased to announce that HONOReform Foundation, along with the Southern Nevada Health District, launched our Compassionate Response Toolkit on December 1, 2010, in Las Vegas. Providers throughout the area will be able to give this helpful resource, written from the patient perspective from our year-long research, to anyone diagnosed with viral hepatitis. It is just a start for our toolkit. It will be available online to all patients…and will be offered to public health departments and other organizations.

I invite you to join us in our efforts—testifying and working with federal and state lawmakers on legislation to protect patients, helping public health officials prevent and respond to outbreaks, and providing inspirational and motivational compassion and support to people across the country who have been affected by unsafe injection practices.

Please visit our web site, HONOReform.org, and please contact me anytime, evelyn@HONOReform.org.

Read a daredevil’s hepatitis story.

The patient's decision: Data on dialysis facilities' outcomes

Roberta Wager went on dialysis in the early 1980s. "I had nothing, no frame of reference," for choosing a dialysis facility, she said.

But now, dialysis patients can have a much more informed choice. Today, ProPublica made available extensive information on the quality of dialysis facilities across the U.S., in an easily searchable database.

"It gives you a snapshot of what a clinic is about," said Roberta, a past president of the American Association of Kidney Patients who works as a nurse and patient educator at several dialysis clinics in Texas. "It should be the patient's right and the patient's decision to have [the numbers]….This is your life. Wouldn't you want to have everything in your favor?"

Almost 400,000 Americans depend on chronic dialysis to do what their failed kidneys cannot. Their number has grown swiftly over the past two decades, spurred by epidemics of obesity and diabetes.

Advice: Dialysis patients should look up the outcomes of local facilities on the database, interview current dialysis facility staff, tour the facilities, and gather information about staff members' experience level and turnover rates.

Read another dialysis story from this blog, or read ProPublica's full story by Robin Fields.

The cult that cures: Listening to stories

"It's not surprising that storytelling became so fundamental to the culture of A.A. What is more interesting is what it contributes to recovery. 'It's just confession,' you might think, or 'It's just free psychotherapy.' And that's partially right. But it's not just confession or psychotherapy when everyone in the room is doing it, and it turns out that listening to stories is just as important – and maybe more important – than telling them. Stories break through loneliness. And perhaps the worst thing about alcoholism - and the reason I tried to kill myself that night – is the conviction that you deserve your loneliness, that no one needs to be cast out more than you do."

Advice: In this holiday season, listen to and tell lots of stories with others.

Read another story about the therapeutic fellowship of A.A.. Thanks to Clancy Martin for this excerpt from his warm and poignant article in the January 2011 issue of Harper's Magazine, ”The Drunk’s Club: A.A., the cult that cures”.

Woodstock in Kissimmee: IHI's National Forum Leadership Summit

In November 2000, a very pregnant woman entered a Boston teaching hospital to have her labor induced. "Suzanne" experienced a series of medical errors that resulted in the loss of her fetus and the rupture of her uterus. This required a hysterectomy and an 18-day stay in the surgical intensive care unit.

Five months later, after the insurer, Harvard's Risk Management Foundation, had settled with the family, and after the hospital's public apology, RMF approached the hospital, asking them to adapt Crew Resource Management to safeguard obstetrics. Physician leaders did so. In fact, the medical staff was so successful at bringing this form of team communication to the Obstetrics unit that the number of high-severity adverse events fell by 62%.

This is a case in point of how tragedy can sometimes ultimately lead to improved patient safety. That may not happen often, as it requires brave and dedicated leaders at the top and middle levels of a hospital, and a particular type of dedication by clinicians. Most hospitals lack leaders like Jim Reinertsen, Paul Levy, and Stephen Pratt. Their leadership was key and their receipt of the John Eisenberg Award was well deserved.


Two weeks ago, at the National Forum of the Institute for Healthcare Improvement near Orlando in Kissimmee, Florida, I had the pleasure of meeting Paul Levy and Dr. Pratt, and seeing Dr. Reinertsen again. Along with the heads of the Cautious Patient Foundation, Paul had charmed his fellow hospital CEOs into sponsoring 50 patient activists from around the country to participate in the Forum. I was one of the lucky ones who'd been chosen to attend the Leadership Summit.

For we patient advocates, it was our Woodstock, a mass intoxicating love-in that convened widely scattered like-minded young-at-hearts who are critical of the Establishment. I expect to tell many of our intense and redemptive stories in this blog over the next few months. Many of us hope to turn our tragedies into improvements as solid, life-giving, and lasting as the use of CRM in Obstetrics.

I'd like to salute the leaders of Boston's Beth Israel Deaconess Medical Center, and the doctors who joined us in the Leadership Summit, including some who have harrowing stories as patients: Carl Flatley, Julia Hallisy, Kevin Kavanagh, Gil Mileikowsky, Cari Oliver, Kavita Patel, and Stephen Pratt.

Read another crew resource management story, or read Stephen Pratt's article of Dec. 2007 in the Joint Commission Journal on Quality and Safety.