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Consumer Engagement: Get On Board

Posted By Mark Alpert, Monday, March 31, 2014
Updated: Friday, June 6, 2014
Consumer engagement is essential if we are going to continue to make progress in patient safety and health care quality.

by Patricia McTiernan

Last week the NPSF Lucian Leape Institute released its latest report, Safety Is Personal: Partnering with Patients and Families for the Safest Care. The report is the result of two roundtable meetings convened by the Institute that included representatives of consumer advocacy organizations, health care systems, academia, and the policy world. And therein lies one of the finer lessons of the report: the best ideas come from a diverse mix of perspectives.

The Institute—and really all of us, as we will all be patients one day—owe our thanks to the 14 consumer advocates (noted with ♦ in the list below) who contributed to this work. Through this report, their perspectives—and those of all of the roundtable participants–help to map the future of what health care can become.

The report goes well beyond some of the good but narrow efforts taking place so far. It looks first at the case for patient and family engagement and the barriers that exist to such collaboration, and then paints the picture of what our health care system might look like with true and complete consumer involvement.

Is consumer engagement the right thing to do to improve patient safety? Absolutely. But beyond that nicety, the report also summarizes evidence that shows engaging patients and families can reduce the costs of health care (by reducing unwanted care) and increase patient satisfaction (which is essential today to any health care organization that wants to remain in business).

Moreover, the report looks beyond the patient-provider level to address system-wide efforts that must take place if the patient perspective is going to be recognized and respected. Getting there will require leadership, training, process redesign, and new ways of thinking. As the authors write in the Preface,

Many of these recommendations are not new, nor are they the province of any particular interest group or organization; rather, they draw from the growing evidence about the power of engagement, and seek to build on what we know can work to reduce adverse events. Driven by a sense of urgency, the NPSF Lucian Leape Institute hopes this report serves as a call to action for leaders of health care organizations, health care professionals, patients and their families, and the public.

The essential message is, get on board with this, because consumer engagement is essential if we are going to continue to make progress in patient safety and health care quality.

The NPSF Lucian Leape Institute Roundtable on Consumer Engagement in Patient Safety

Barbara M. Balik, RN, EdD
Common Fire Healthcare Consulting

Michael J. Barry, MD
Informed Medical Decisions Foundation

Anne C. Beal, MD, MPH
Deputy Executive Director & Chief Operating Officer
Patient-Centered Outcomes Research Institute

Doug Bonacum, MBA, BS
Vice President, Quality, Safety, and Resource Management
Kaiser Permanente

Carolyn C. Brady♦
CBrady Consulting

Shannon Brownlee, MS
Senior Vice President, Lown Institute
Senior Fellow, New America Foundation

Sophia Chang, MD, MPH
Director, Better Chronic Disease Care
California Healthcare Foundation

Alide L. Chase, MS
Senior Vice President, Quality and Service
Kaiser Permanente

James B. Conway, MS
Adjunct Lecturer
Harvard School of Public Health

Ilene Corina♦
Patient Safety Consultant
Founder & President

Thomas Gallagher, MD
Associate Professor, Department of Medicine
University of Washington, School of Medicine

Lillee Gelinas, RN, BSN, MSN, FAAN
System Vice President and Chief Nursing Officer
Christus Health

Rosemary Gibson, MSc♦
Senior Program Officer, Health Care Group
Robert Wood Johnson Foundation

Jessie Gruman, PhD♦
Center for Advancing Health

Helen Haskell, MA♦
Founder & President
Mothers Against Medical Error

Martha Hayward♦
Lead, Public & Patient Engagement
Institute for Healthcare Improvement

Beverley H. Johnson♦
President & Chief Executive Officer
Institute for Patient and Family-Centered Care

Donald W. Kemper, MPH
Chairman and Chief Executive Officer
Healthwise Incorporated

Linda K. Kenney♦
President & Executive Director
Medically-Induced Trauma Support Services

Carol Levine, MA♦
Director, Families and Health Care Project
United Hospital Fund

David Lorber, MD
Vice President, Clinical Affairs
Walgreen Co.

Lauren Murray♦
Deputy Director, Consumer Engagement and Community Outreach
National Partnership for Women & Families

Gail A. Nielsen, BSHCA
Director, Learning & Innovation
Center for Clinical Transformation
Iowa Health System

Michael O’Reilly, MD
Professor of Anesthesiology and
Perioperative Care
University of California Irvine

Diane C. Pinakiewicz, MBA, CPPS
Distinguished Advisor
National Patient Safety Foundation

Joshua J. Seidman, PhD
President, Society for Participatory Medicine
Consultant, Brookings Institution

Karen R. Sepucha, PhD
Director, Health Decision Sciences Center
Massachusetts General Hospital
Assistant Professor of Medicine
Harvard Medical School

Dale Shaller, MPA
Shaller Consulting

Sue Sheridan, MBA, MIM♦
Director of Patient Engagement
Patient-Centered Outcomes Research Institute

Jill Steinbruegge, MD, PhD, ABHM
Senior Vice President for Leadership & Innovation
America’s Essential Hospitals

Kalahn Taylor-Clark, PhD, MPH♦
Assistant Professor, Health Administration and Policy
Senior Advisor, Center for Health Policy, Research, and Ethis
George Mason University

Charles Vincent, PhD
Director, Clinical Risk Unit
St. Mary’s Hospital London

Deborah W. Wachenheim, MPP♦
Health Quality Manager
Health Care for All

John H. Wasson, MD
Professor of Community and Family Medicine
Dartmouth Medical School

Saul N. Weingart, MD, PhD
Chief Medical Officer
Tufts Medical Center

Britt W. Wendelboe♦
Head of Office
Danish Society for Patient Safety

Richard Wexler, MD
Chief Medical Officer
Informed Medical Decisions Foundation

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One IV Bag, One IV Tubing, and Only One Time

Posted By Administration, Wednesday, March 5, 2014
Updated: Friday, June 6, 2014
This is the final post in a series by patient advocates affiliated with the federal Partnership for Patients Patient and Family Engagement Network. The series was created in recognition of Patient Safety Awareness Week 2014.

By Evelyn McKnight

Patient Safety Awareness Week is a good time to celebrate the national movement toward patient-centered care. This week—which is dedicated to creating awareness and sharing educational resources about patient safety—reminded me of a recent health incident that led me into a fuller patient-centered care relationship with my health care providers.
Several months ago I had what started out as a minor health situation. But as time went on, I experienced a cascade of health complications that resulted in a not-so-minor situation. At my clinic visit, I asked my doctor the Ask Me 3 questions that the National Patient Safety Foundation suggests:
  1. What is my main problem?
  2. What do I need to do?
  3. Why is it important for me to do this?
My doctor explained that I was nearing dehydration, and would need IV fluids if my condition continued to deteriorate. The thought of an IV infusion panicked me, and I asked for 24 hours before we began IV fluids.

As I chugged Gatorade, I tried not to think about the last time I had an IV infusion, which was during chemotherapy in 2000. The nurse reused syringes to access a mutidose saline bag. When a nurse used a syringe on a patient with known hepatitis C and then reused the same syringe to access the IV bag, the IV bag was contaminated. This happened multiple times during the day; in fact, it was found during an investigation by Nebraska Health and Human Services that after a day’s use, the bag was cloudy, pink, with bits of sediment. In this way, 99 Nebraskans contracted hepatitis C.

As I tried to rehydrate, I prepared myself mentally for an IV should I need one. Because of schedule conflicts, I would not have a loved one to advocate for me; I would advocate for myself. I knew that I wanted to continue the patient-centered care relationship that my health care providers and I had, believing it to be vitally important to improving the quality of health care and reducing costs at the same time. I reviewed materials on injection safety and What to ask Healthcare Providers. The website suggests that patients ask health care providers this question before an injection: “Will there be a new needle, new syringe, and new vial for this injection?” I knew that I would need to change the wording to “Will there be a new IV bag and new tubing for this infusion?” I even made a sign modeled after the One and Only Campaign logo to make my point.

I did not need to have the IV. If I had needed one, I would not have hesitated to have it, as I felt empowered and educated to be an equal partner with my health care providers.

Tags:  Voice of the Patient 

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A Reflection of Patient and Family Engagement through the Lens of an Advocate

Posted By Administration, Tuesday, March 4, 2014
Updated: Friday, June 6, 2014
This is the second in a series of posts from patient advocates affiliated with the Partnership for Patients Patient and Family Engagement Network being published in recognition of Patient Safety Awareness Week 2014.

by Becky Martins

My advocacy spirit derives from the days when I was driving a family member 150 miles round-trip, three days a week, to dialysis treatments. I spent countless hours at the unit visiting with patients and their families. It was through their stories that I learned of the many challenges that patients living with chronic illness face. It was by their example that I learned of the resilience of the human spirit to face health and related challenges head-on. The unit was my classroom, and my teachers were the patients and families, along with the unit staff who cared for them.

Becky Martins

How did I transition from a family advocate to a patient advocate? The dialysis unit social worker approached me with a request: there was an elderly patient halfway into my commute who didn’t have transportation to the unit. It was a bit out of my way, but, could I help? It was that simple: an ask by a member of the care team, and a need met by a family member. I was encouraged to get involved and invited by a local health care organization to join their executive board as a patient and family representative. In 1997, I received the Board of Trustees Service Award for 10 Years of Service. That same year, the National Patient Safety Foundation (NPSF) was founded.

In November 1999, the cover of the Wall Street Journal featured the Institute of Medicine’s report, To Err Is Human: Building a Safer Health System. While the 1980s and ‘90s were about access and affordability, the millennium brought patient safety to the forefront.

The following year, I was introduced to the leadership at NPSF. Ilene Corina, Jennifer Dingman, Mary Foley, Roxanne Goeltz, Debra Malone, Patti O’Regan, Arlene Salamendra, Ralph Speken and I were among those later invited to join their first patient and family workgroup. We were a small group of volunteers impassioned with the desire to partner with health care leaders for the common goal of improving health care quality. In 2002, the expanded council was included in the development of National Agenda for Action: Patients and Families in Patient Safety−Nothing about Me, Without Me. Patient and Family Advisory Council members were invited to participate on subcommittees, and our attendance at the NPSF’s annual Congress was supported through scholarships.

Today, the inclusion of the patient and family voice is being integrated into the design, delivery, and measurement of health care through the Partnership for Patients (PfP) Campaign. The PfP’s Hospital Engagement Network (HEN) is inviting patients and families to share their stories (some heartbreaking to hear, others to be celebrated), to participate on boards, in workgroups, and on advisory councils in hospitals and community-based organizations nationwide.

No one wants to see caregiving organizations succeed more than the patients and families that they serve.

Tags:  Voice of the Patient 

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Patient Safety Awareness Week: A Vehicle for Change

Posted By Administration, Monday, March 3, 2014
Updated: Friday, June 6, 2014
A patient advocate reflects on the legacy of Patient Safety Awareness Week and what patients and families can teach the health care system.
This is the first in a series of posts from patient advocates affiliated with the Partnership for Patients Patient and Family Engagement Network being published in recognition of Patient Safety Awareness Week 2014.

by Helen Haskell

Thirteen years ago, I picked up a magazine in a doctor’s waiting room. For those around me, it was a routine doctor’s visit. For me, nothing was routine. My 15-year-old son had died three months earlier as a result of elective surgery, and I was in a state of bewilderment that the world could continue on as though it had not really come to an end.

I was looking at the magazine because it contained an article naming the hospital where my son had died as one of the top 10 children’s hospitals in the United States. On the opposite page was an unrelated article about another bereaved mother, Ilene Corina, who had just helped pass a doctor profile law in New York. I took the magazine home. That night, on our old desktop computer, my daughter said, “Look!” It was a second article about Ilene, but this one included her e-mail address (an e-mail address, I might add, that remains in effect to this day). I wrote to Ilene and thus began my journey in patient safety advocacy.

The following year, I would see Ilene cited as the moving force behind the first Patient Safety Awareness Week, another tradition that still endures. I don’t remember being involved in the early days of this recognition week, but I do remember being amazed at its reach and proud of my friend. Even then, Patient Safety Awareness Week was recognized as a “health observance” in hospitals around the country.

NPSF and programs like Patient Safety Awareness Week were beacons to patient advocates like me because they were among the few places where patient safety seemed to actually focus on the patient. In those days, the emphasis on system failure was often interpreted to mean that patient safety was a technical problem, with a technical fix. We were all for technical fixes, but we wanted more. As family members who had tried and failed to deflect impending medical disasters, we believed fervently that patient input was the single most important factor in effecting change. But by and large we were reduced to begging outside the door. Few health care professionals seemed to understand just how remarkable it was that people who had suffered severe harm should respond by holding out their hands and offering to help.

The door began to open with organizations like NPSF, which published an action agenda for patients and families in patient safety in 2002. It was NPSF’s sponsorship that got Patient Safety Awareness Week into hospitals across the country, the impetus being the NPSF patient and family advisory council (PFAC), probably the first national PFAC in the country. As the years have gone by, these ideas have spread, but they have spread slowly. Many of the action items on the 2002 agenda are still action items today.

The past few years have seen a significant push for change, however. One of the biggest change agents has without doubt been the Partnership for Patients, the massive patient safety program begun by improvement guru, Dr. Don Berwick, during his tenure at the Centers for Medicare and Medicaid Services. The Partnership for Patients was created with patient involvement baked in, in the form of a Patient and Family Engagement Network and a Patient and Family Engagement Affinity Group for hospitals. This framework pushes out the concepts of patient-driven practice and governance to the majority of hospitals in the country.

Since its inception, Patient Safety Awareness Week has been an important symbol of hospital involvement in patient safety. It continues to be a vehicle to promote change. As we recognize its 13th anniversary, we need to remember that it is above all a product of collaboration between patient and provider, and that it is not just about safety, but about awareness of all that patients can teach health care providers about themselves.

Tags:  Voice of the Patient 

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