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The Patient's Voice in Action

Posted By Administration, Friday, October 28, 2016

If you are involved in patient safety, you’ve probably heard your share of bad news.
This is a good news story.

by Patricia McTiernan, MS

Marian Hoy attended the 2016 NPSF
Congress on a patient scholarship and
"the lightbulbs just went off.”


In January of 2014, Marian Hoy, then 66 years old, became ill with what she thought might be the flu. “I felt bad for three days,” she recalls. “There were red flags that it wasn’t just the flu, but I didn’t recognize them.”

A former Dallas police officer and police trainer, Ms. Hoy lives in a small town outside of Austin, Texas. Her illness led her to become so disoriented that she called the town’s chief of police and asked him to bring her a soft drink. “I know the police chief,” she says, “but I never would have called him for that had I not been suffering confusion.”


When she realized the trouble she was in, she called the EMTs and was taken in the middle of the night to the hospital that she chose, Seton Southwest, part of Ascension Healthcare. Doctors there discovered that scar tissue from a long-ago surgery had surrounded Ms. Hoy’s small intestine and stopped her system. She underwent surgery to repair the problem, and in the days afterward she experienced complications that included sepsis and pneumonia.

“Everything was going south” for a time, she recalls now. “I would say to the doctor, ‘am I in danger?’ because I couldn’t say the words, ‘am I going to die?’ And he would say, ‘No, Ms. Hoy, you are not in danger.’


“In other words," she says, "he thoughtfully used my own words, so as not to frighten me.”


If you’ve read this far you are probably thinking, “Wasn’t this supposed to be a good news story?” Indeed, Marian Hoy spent three weeks in the hospital, and she recovered very well. But that’s not the only good news. When she tells her story, it’s all about her experience of care.

“They treated me like I was the only patient they had,” she says. “They gave me very individual care. When I called for a nurse, they were there in minutes. My doctors, surgeons, internseverybody knew my labs over the 24-hour period, but they came to my bedside to talk to me to see if I could put together a declarative sentence and understand their questions, something I was unable to do when I was admitted. And they spoke to me with language I could understand.”


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Patient Experience Matters

Patient experience of care has been defined as “the sum of all interactions, shaped by an organization’s culture, that influence patient perceptions across the continuum of care.” A 2013 study found “patient experience is positively associated with clinical effectiveness and patient safety,” and supports the use of patient experience as a measure of quality.

Ms. Hoy’s experience puts a face to that research. Grateful for the care she had received, she wrote a letter of thanks. She was subsequently recruited to join Ascension’s system-wide Patient and Family Engagement Steering Committee. Through her work with Ascension, Ms. Hoy became aware of the NPSF Patient Safety Congress and was awarded a patient scholarship to attend the 2016 meeting.


“When I went to Arizona for the NPSF Congress, I had no idea what to expect,” she says now. “I was extremely naïve about safety in hospitals. I don’t know that a lot of patients understand the gravity of patient safety issues. The lightbulbs just went off.”

As a former law enforcement officer, Ms. Hoy was particularly interested in issues discussed during a breakout session on workplace violence in health care, which is on the rise. “Until we include an in-depth discussion of how today’s violence can and does impact the hospital setting, I don’t think we’ve completed the conversation on safety,” she says.

Today, Ms. Hoy serves on three patient advisory boards within the Ascension system. She is intent on sharing her experience because, “they saved my life, and there is no way one can repay that debt.”

She wants people to know about it. But she is also adamant about urging others to speak up and bring an advocate with them if they can when they visit the doctor or hospital.

“Participate in your own illness, ask questions,” she says. “If your doctor doesn’t want to answer questions, find another doctor. This a conversation about your health.”

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Do your health care practitioners make it easy for you to be engaged in your care? Comment on this post below. Note: to post a comment you must be logged in. Register or log in.

Patricia McTiernan, MS, is editor of the P.S. Blog. Contact her at

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Tags:  2016 NPSF Congress  patient advocate  Voice of the Patient 

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Advocate, Educate, Communicate: What Patients Need to Know

Posted By Administration, Monday, June 20, 2016
Updated: Monday, June 20, 2016

It is always the obvious that proves challenging and communication between doctor and patient is no exception.

by Betsy M. Cohen, CRC, LRC, CCM, ABDA


In 2012, I left a pile of paperwork on my desk convinced that I would complete it later that afternoon when I returned from my first colonoscopy. It never occurred to me that morning that my colon would be perforated, that my insistence that something had gone wrong during the procedure would be ignored, and that I would require emergency surgery to resect my colon. I did not imagine that I would wake up in an intensive care unit and face a series of complications and mistakes that would change my body and life forever.



I did not imagine that I would
wake up in an intensive care unit
and face a series of complications
and mistakesthat would change
my body and life forever.  


If you or a loved has one experienced a medical accident or an unexpected outcome from a medical procedure or hospitalization, perhaps this sort of nightmare sounds familiar. You know the surreal feeling of losing control of your health, of being engaged in battle to regain your physical and mental equilibrium while desperately attempting to find your way back to some semblance of a quality life. 


I have worked in and around health care for 30 years, but was unable to prevent three medical errors resulting from a routine procedure. Ultimately, I survived and created a new way to flourish by actively taking control of my well-being. During my recovery, I wrote a book to help others navigate their health crises and reclaim their lives.


Here are the most important tips that I offer to anyone endeavoring to overcome medical challenges.


1. Advocate. One of the most difficult things to do when you are lying vulnerable in a hospital bed is to feel powerful, able, and strong. Each of us needs an advocate regardless of our physical condition or well being. Solicit a family member, friend, or case manager at the hospital to listen with you to your doctor’s recommendations and advocate on your behalf.


Be certain that everyone involved in your care knows your wishes about pain medication, additional tests and procedures, as well as what kind of heroic measures you sanction as a component of your care. If you have allergies especially to medications, review these with each new provider involved in your care.


Never assume that each doctor or nurse has thoroughly read your chart or is aware of your medical history. Health care providers are human and mistakes occur. Speak up to prevent additional complications whenever feasible.


2. Be Open. You may have a speedy and complete recovery after a medical accident or, like me, your body may only experience a partial restoration of function. Become an open-minded and educated consumer of medical and health services by inquiring about all of your treatment options.

Discuss any interest you have in exploring complementary, alternative medicine, and rehabilitation therapies with your doctors. Complementary and rehabilitation treatment providers tend to focus on function and prevention with the goal of maximizing your physical, emotional, spiritual, and behavioral health. Treatments such as acupuncture; cranial sacral therapy,; occupational, physical, and speech therapy; biofeedback; and mindfulness training are but a few of the possible adjunct services that you may find helpful, with regard to pain management, improved sleep, and learning to regain your capacity to manage your day-to-day responsibilities irrespective of whatever illnesses or chronic conditions may continue to persist.


3. Communicate. It is always the obvious that proves challenging and communication between doctor and patient is no exception. When you experience a medical crisis, your health care team will often be focused on the technical aspects of what transpired and what they need to do to stabilize your health.  None of that changes your need or right to know what is happening to your body, what efforts are being made to rectify the medical issues that exist, and your treatment team’s thoughts about your prognosis. Trusting your providers is important, but blind trust benefits neither patient nor doctor.

Be certain to speak up and talk to your doctors about concerns that you have related to your health or healing. No matter how invested anyone is in your care, you are the only person who will eventually go home and live with your body, as well as the impact that these medical events will have on your health. If your medical team is not communicating the information that you need to hear, don’t be afraid to initiate that conversation to assure yourself that everyone is committed to your best possible recovery outcome.

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Betsy M. Cohen is a Certified and Licensed Rehabilitation Counselor, a Certified Case Manager, and an American Board Certified Senior Disability Analyst specializing in the treatment of individuals who are affected by neurological and neuropsychiatric conditions and chronic illnesses. She is the author of Illness To Wellness: Reclaiming Your Life After A Medical Crisis. Ms. Cohen is also a member of the American Society of Professionals in Patient Safety (ASPPS) at NPSF.

Tags:  patient advocate  patient story  Voice of the Patient 

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New Breed Patient, Family Advisors Move Health Care, not Flower Pots

Posted By Administration, Thursday, May 7, 2015
Updated: Wednesday, May 6, 2015

For more than a decade, hospitals have been establishing volunteer patient and family advisory councils as useful sounding boards. Today, a small but growing number of institutions are including patients and families more broadly in shaping the delivery of care.

by Stephen Littlejohn, MA, MBA


Don’t ask Kim Blanton, one of the new breed of hospital patient and family advisors, where to put the flower pots. Politely, she will say she doesn’t care. Instead, she told last week’s National Patient Safety Foundation (NPSF) Annual Congress, “Give advisors meaningful work meeting a true need.”


For more than a decade, hospitals have been establishing volunteer patient and family advisory councils. Most function as useful sounding boards, providing feedback on brochures, commenting on building designs, adjusting form language, assisting with patient satisfaction programs, and arranging flower pots.


   From left: Beth Daley Ullem, Chrissie Blackburn,
and Kim Blanton on stage at the 17th Annual
NPSF Patient Safety Congress

Meanwhile, consistent with NPSF recommendations, a small but growing number of institutions are now including patients and families more broadly in shaping the delivery of care. These advisors sit on safety committees, assist root-cause-analysis teams, participate in clinical redesign initiatives, support quality improvement projects, and serve on governing boards.


When North Carolina’s Vidant Health asked Blanton to be an advisor five years ago, her first meeting was about end-of-life care. Since then, she has interviewed candidates for senior positions like chief medical officer and worked on reducing heart failure readmissions. As a long-time cardiac patient, Blanton brought a unique perspective to the development of a transitional program that helps patients care for themselves at home.


Advisors on Staff

Increasingly, hospitals are even hiring advisors, as University Hospitals Case Medical Center in Cleveland did when it appointed parent Chrissie Blackburn as its first principal advisor on patient and family engagement. Blackburn, who also addressed the Congress, is the creator of the ETeam® program, a communications tool for point-of-care patient and family engagement. Reporting directly to the chief executive officer, she has been piloting the program in several units and is currently developing a module for hospital-acquired infections.


In 2008, Children’s Mercy Hospital in Kansas City hired parents Sheryl Chadwick and DeeJo Miller as family centered care coordinators. Seven years later, Children’s Mercy has more than 300 advisors embedded on committees, task forces, and teams throughout the hospital.


Chadwick and Miller attribute the broad involvement of advisors to a 2012 policy change “placing patients and families at the center of decision making.” By 2014, the number of participating advisors had more than doubled.


Leading a Congress workshop, they reported a parent saying she “feels like a peer on the team.” Last year, the Caregiver Action Network ranked Children’s Mercy among the nation’s top 25 organizations for patient and family engagement best practices.


Similarly, Vidant Health is doing more than sponsoring a top-level advisory council, according to Blanton. “Advisors partner with care units on the front lines, working with staff, going to meetings, and participating in rounds.”


During the 10 years she has received care and provided advice, Blanton says she has seen progress. “It’s a whole lot better. There are 150 advisors like me, helping to make it better,” she explained. Vidant fully integrates advisors on teams and committees, engages patients, and includes advisors on root-cause-analysis teams. Last year, the health system reviewed its extensive patient engagement experience, dating from 2000, during a recorded North Carolina Network Consortium online event (see Engaging Community: Patient Advisory Councils.)

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Transparency: Engagement’s Frontier

Both Children’s Mercy and Vidant Health provide advisors with training, especially on the importance of maintaining patient confidentiality. Still, engaging so many advisors on a daily basis, from the C-Suite to the front lines, requires a strong commitment to transparency.


In fact, the level of that commitment defines patient engagement’s frontier.


Hospitals and health systems are beginning to add patient and family representatives to their boards. However, some are only doing so up to a point. One asked its patient representative to leave when discussing adverse events, according to Beth Daley Ullem, a parent who joined Blanton and Blackburn on the NPSF Congress stage.


Ullem, who works with boards on improving patient safety, said there is “such a gap in the information patients are given. There is such variability on outcomes, but patients are unable to access outcomes and safety data. To get to value based health care we need outcomes and pricing transparency.”


In fact, the most recent report of the NPSF Lucian Leape Institute, Shining a Light: Safer Health Care Through Transparency, called for “extreme honesty with patients and their families from start to finish.” The report, distributed to all Congress participants, concluded that the “current status of transparency between clinicians and patients in most organizations is less than optimal.”


Apologize, Disclose, Resolve

When failures in care result in harm, the report advises clinicians to embrace apology, disclosure, and early resolution. Presenting a successful model at the Congress was the Massachusetts Alliance for Communication and Resolution following Medical Injury. Also making progress in this area are the University of Michigan Health System and the University of Illinois Medical Center at Chicago.


Although the report recommends involvement of willing patients and family in root cause analyses of medical errors, it does acknowledge the practice merits further discussion, experimentation, and research. In fact, the practice could turn out to be controversial, judging by comments from the Michigan Health and Hospital Association Keystone Center during a Congress presentation.


The Center is coordinating an initiative among the state’s hospitals to increase patient and family engagement. Kicked off in October 2013, with a white paper, the effort now involves networking activities, leadership engagement, materials development, and a measurement process. The latter includes patient, family, or caregiver participation in root cause analysis.

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Two Decades of Progress

Still, the patient safety movement has made considerable progress on patient and family engagement since October 1996, when the NPSF debuted at the first Annenberg Center patient safety conference in Rancho Mirage, California.


The Foundation officially got under way shortly thereafter on January 1, 1997, began work on a research grant program and concluded the year by announcing a survey finding 100 million Americans had been touched by medical error as patient, family or friend. Meanwhile, the Joint Commission implemented a new “accreditation watch” program for institutions experiencing a major error or near miss.


“The initiatives were good,” Linda Golodner told USA Today, but “doctors must start treating patients with respect for real change to take place.” Then the president of the National Consumers League, Golodner added that patients would detect some problems on their own if they had more information.


Now, with more information, patients and families are doing more than detecting problems. They are part of the solution.


Are you a patient involved in advancing quality and safe care? Comment on this post below.

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Stephen Littlejohn, MA, MBA, is principal of Climb the Curve Communications, LLC, and a former NPSF Board of Directors member and Communications Committee chair. 


Tags:  PFAC  Voice of the Patient 

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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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