The Unexpected Journey Continues

by Armando Nahum, Director, MIQS Center for Engaging Patients as Partners

It’s 2006 and another Labor Day Weekend is upon us. As preparations are under way for a gathering of family and friends, the phone rings…

Our son Joshua, an avid skydiver instructor living in Colorado, has just had an accident. A cold air density pushed his parachute inward and threw him to the ground at 60 miles per hour. Joshua is being taken to the Emergency Department and I’m scrambling for any airline to get me on the next flight to Denver. I manage to find a ticket, and arrive Denver in the early evening hours. Joshua is in ICU with a broken left femur and a contusion on the back of his head. I immediately saw a tube on the top of his head and asked what it was. They told me they had to perform a ventriculostomy, a temporary drainage to reduce the swelling in Joshua’s brain.

I sat there and watched my son go in and out of sleep, a result of the heavy sedation medication he had been given. I noticed the room was dark, no windows and bits and pieces of paper on the floor. I didn’t think much of it back then…I just wanted my son out of ICU. My understanding of hospitals at that time was quite limited: you go through the ED after an accident, then they move you to the ICU and if you get better you go to a “regular” room that means you get to go home soon.

But that was not the case with Joshua. He spent six weeks in ICU, battled two cases of MRSA and delirium, and finally he seemed to be on a good road to recovery. His neurosurgeon told us Joshua was “good to go”. They found a Rehab Facility a couple of miles down the road where Joshua had some work left to do. I was so happy to hear that, finally, our nightmare would end.

Six days into Joshua’s rehab, I received a call at 11:30pm from his neurosurgeon. He said that Joshua spiked a fever of 103F, his brain was swelling and he coded. He said he performed a lumbar puncture to determine if an infection was present. Little did he know that in doing so, he would end up “sucking” part of Joshua’s brain into his spinal column, damaging C1 to C3 leaving him unable to breathe on his own. He was on a ventilator to breathe for him while the neurosurgeon figured out the extent of this new insult to his spine–not from crashing 60mph into the ground, but sustained during care by his doctor. I was in shock by the news, a phone call that reported the opposite of what we had last been told, deflating our expectations of recovery. I also remember so many of the details the neurosurgeon shared meant absolutely nothing to me at the time. I only had one question for him: “Are you confident you can handle my son?” And he answered: “Absolutely!”

I took the next flight to Denver and upon arriving there I found that Joshua had been transported to another hospital. His neurosurgeon was no longer available. He decided to “wash his hands” as Pontius Pilate did, Joshua no longer his concern. Within a few days the damage caused to Joshua’s spinal column became clear: my son was now a ventilator-dependent quadriplegic with a gram-negative bacteria in his cerebral spinal fluid baffling everyone at that hospital. The bacteria that had been cultured were still unable to be stopped by any antibiotic available anywhere in the world. Joshua died a few days later, but not from his original injuries. My son ultimately died unnecessarily from an infection he caught during his hospital stay.

Joshua acquired his infection from the first hospital that cared for him, and 11 years later they still hide. They still deny and “fudged” his death certificate to where Reuters decided to investigate and discovered lies from various hospitals. Article cited here: https://www.reuters.com/investigates/special-report/usa-uncounted-surveillance/

And so, after the death of my son, my personal search to find out how this could happen transformed me into a man on fire; a man with a mission and an unquenchable passion to discover how to stop these largely preventable infections from happening to anyone else ever again. As irony would have it, or maybe because I was now awake and looking, we soon discovered that a total of 3 members of our family had been impacted with hospital Infections in 3 different hospitals, in 3 different states in only 10 months’ time…

Someone once said that, in life, even more than education, experience is sometimes the best teacher. I can tell you with all certainty, that there no one has been taught more or has been more profoundly affected by the personal devastation and particular loss caused by hospital acquired infections than my own family.

With the help of the CDC, my wife Victoria and I decided to establish an organization dedicated on Infection Prevention (Safe Care Campaign) and arranged to meet with hospitals throughout United States and Canada; to tell our story and empower the caregivers to do the “right thing” for every single patient. The CDC taught us that the component of most importance to prevent infection during the delivery of care was something so simple: Hand Hygiene.

We soon realized that it would take us many years to visit thousands and thousands of hospitals, and fortunately, a new “movement” was starting. A movement that would allow the Patient and Family Members’ voices to be heard. We jumped at the very first opportunity and created a new organization that, if done right, would have our voices heard throughout the world. The Healthcare and Patient Partnership Institute (H2Pi.org) emerged from a partnership with two of the most renowned Patient Engagement experts: Marty Hatlie, JD and Tim McDonald, MD, JD.

Together, we built a “model” of partnership between Patients and Family Members and hospital staff that was based on Quality and Safety initiatives. We wanted to make sure it would be patient harm that would be our focus, not just patient experience—the paint color of walls, the noise level in patient rooms or parking efficiencies. We wanted to help health systems with quality and safety initiatives, like reducing hospital-acquired conditions (HACs), reducing hospital readmissions and supporting these aims across the continuum of care.

Our first client was MedStar Health, the largest not-for-profit healthcare system in the mid-Atlantic region. In just 2 short years, we established Patient and Family Advisory Councils for Quality and Safety (PFACQS®) in all of their 10 Hospitals. Today, MedStar Health, with the leadership of Dr. David Mayer, Vice President of Quality and Safety, is a leader in Patient and Family Engagement throughout the country. Since then we have worked diligently with Vizient Inc. (formerly VHA) in developing many Advisory Councils throughout the USA.

With the recent launch of MedStar Institute for Quality and Safety (MIQS), my unexpected journey has recently provided me with yet another opportunity. As the Director of Center for Engaging Patients as Partners at MIQS, I am honored to be part of an innovative, state of the art and forward-thinking Institution with an impeccable team devoted to supporting the MedStar Health Quality and Safety mission.

The Institute is home to the Center for Open, Honest Communication, the International Training Center for Bloodless Medicine and Surgery, the Center for Engaging Patients as Partners, the Academy for Emerging Leaders in Patient Safety, and an ever-evolving array of quality and safety research, education and training programs and clinical improvement programs. The MIQS Mission is shaped by the Quadruple Aim — Better Care, Better Health in Communities, Lower Costs, and Healthcare Workforce Support. Click here, to find out more about the work we are doing through MIQS.

A Jolly Good Fellowship

By Melanie Powell, MD, Fellow for Quality & Safety
MedStar Institute for Quality & Safety

Imagine starting a new job. You immediately feel slightly stressed, right? Regardless of how adequately you’ve researched the company, or whether you’ve worked at the company for 15 years and are simply starting a new position, there is a feeling of uncertainty associated with a job change. What will the challenges be? Will I get to do what I love? Will I have support when I feel like things aren’t going as planned?

Now imagine starting a job that’s never existed in your company. Would you feel something more than stress?

While there exist other Fellows in Quality and Safety around the country (albeit a small number), there has never been an administrative Fellow in Quality and Safety at MedStar Health. It was the distinct vision of a select few at the MedStar Institute for Quality and Safety who created my position and continue to support my efforts and our collective vision.

This distinction affords me two things:

  1. Freedom
  2. Pressure

On any given day, I have the freedom to participate in activities that further my education, and to collaborate in real time with quality and safety leaders in the organization (at least once weekly I have one-on-one time with the Assistance Vice President of Quality and/or the Assistant Vice President of Safety at MedStar Health – invaluable mentorship that I cherish). This is important for several reasons: obviously the education, but also because safety events happen at 2am; event reviews are arranged within 48 hours of an event; disclosure happens within minutes; CANDOR and Patient Communication Consult training sessions and Clinical Quality and Safety meetings are scheduled throughout the week at widely varying times. There needs to be flexibility in the schedule of an administrative fellow.

For instance, this month (all with minimal notice) I attended an event review for a serious safety event, volunteered to interview providers in operating rooms at two separate hospitals as part of a project to reduce the incidence of retained foreign objects, scheduled a lecture to educate residents about just culture and high reliability, rounded with surgical residents to observe safety events and unsafe conditions, attended a conference to improve the diagnostic process and reduce diagnostic error, became the team lead on a project to develop measures to reduce diagnostic error with the Institute for Healthcare Improvement, joined a committee to develop educational interventions to improve the diagnostic process with the Society to Improve Diagnosis in Medicine, and on and on and on…

Now to the pressure. This particular fellowship is not accredited by the ACGME…yet. If I succeed in attaining my educational objectives it will further the case for ACGME accreditation; if not, we will have lost a huge opportunity to contribute to a formal Quality and Safety Curriculum in Graduate Medical Education. To maximize the likelihood of success, I spent a great deal of time researching other fellowships and looking at the credentials of leaders in quality and safety to create a robust list of goals and objectives. I will also complete a certificate program in Executive Leadership in Quality and Safety in the spring at Georgetown University, a passion project of quality, safety, and education leaders at the MedStar Institute for Quality and Safety. This Masters level certification will provide critical didactic knowledge to round out my practical experience.

So, while I do feel stressed, I also feel incredibly privileged. Every day I get to do exactly what I love. I also have the privilege and the pressure (as Billie Jean King likes to say, pressure is a privilege) of setting the tone for all future fellows who work at the MedStar Institute for Quality and Safety. It’s a huge responsibility. I think to myself, in 15 years what will the fellow(s) be working on? Will there be a fellow in Resident Quality and Safety education? A Fellow in High Reliability? A Fellow in Practice Improvement? The possibilities are endless…if this experiment succeeds.

What I do know is…when I go to residency programs and tell current trainees that they can complete a Fellowship in Quality and Safety, they sit up straighter and at least one set of eyes sparkles. I remember that feeling, and I know that any future Fellow in Quality and Safety at MedStar, because of the flexibility to seize all educational opportunities and develop projects with system-wide support, will make a huge difference at MedStar Health and beyond.

The Power of the Patient Voice – One Scientists Journey

by Kelly Smith, PhD

As a health services research, I often thought of the patients I worked with as a means to an end – as subjects in my research helping me to achieve greatness. As I worked with patients after open heart surgery, I learned so much from them, from their stories, and their shared experience of health and disease in a fractured healthcare system. I knew that the system needed help and found enlightenment in the field of patient safety.

As a newly minted doctor of philosophy, I embarked on a fellowship in patient safety research at the University of Illinois at Chicago. Here, I learned the power of the patient in a completely different way. They became my partners advocating for health systems change and transforming organizations into learning healthcare systems. I wanted to share a few of those opportunities here with you all.

First, we partnered with patients in developing a program to improve the health systems response to patient harm. This work led to the development of the Seven Pillars model for communication and resolution and in 2013, led to the development of the Communication and Optimal Resolution Program Educational Toolkit (CANDOR) in partnership with the Agency for Healthcare Research and Quality. Our patient partners continue to work with us to change the face of healthcare for patients and families harmed by medical error.

Second, in my first project coming to MedStar Health, our team partnered with patients to design the We Want to Know program – a program aimed at detecting, addressing, and learning from patient perceived breakdowns in care. Our patient partners wanted to “empower” over “educate” and advocated for active outreach rather than simply a passive campaign completely changing our approach! Now into our fourth year, MedStar has implemented WWTK across all ten of its hospitals helping to achieve the patient’s voice in healthcare transformation and improvement.

Third, our recent work, partnering with patients and primary care clinicians to develop and field test a Guide to Improving Patient Safety in Primary Care Settings by Engaging Patients and Families has yielded a new approach to translating evidence into practice called – Co-Production! It is through our process of co-production that we have created four interventions for the Agency for Healthcare Research and Quality to improve patient safety in primary care by engaging patients and families.

What has been most rewarding about these experiences is that:

  • Together, we have crafted a new normal for patient safety research.
  • Together, we have found our common language to discuss difficult and delicate issues.
  • Together, we have found our voice!

It is only together as health system leaders and patients as partners can build a safe, reliable, and supportive healthcare system to achieve the quadruple aim. I am so fortunate to work at MedStar Health that puts patients at the heart of its quality and safety journey.

Gaining Momentum to Improve Diagnosis in Medicine

By Chris Goeschel, ScD, MPA, MPS, RN

Earlier today Facebook reminded me of a memory from 2015. I am not a daily FB user, and I limit my posts to select, real friends, versus the “I know someone who knows you“ category social media tends to classify as “friends”. Ironic that the post referred to an Institute of Medicine (IOM) Panel on which I had served for 2 years, and the report that our committee released in September 2015 on “Improving Diagnosis in Health Care”. Two years ago an article discussing the findings and importance of our report appeared in the New York Times. My FB post included a link to the article.

Today, as I write this I am sitting on a plane headed to Boston for the 10th annual meeting of the Society to Improve Diagnosis in Medicine(SIDM). My mind drifts to the ways in which life has a way of merging events that occur in isolation, but create reality for individuals. Thirty years ago today my 67-year-old father died from a cancer that was treated as an infection until just weeks before he died. Missed diagnosis? Delayed diagnosis? For me, the memory is he died too young, too quickly, and in a way that surprised his physician, who cried when he told our family that in fact, it was not an infection it was cancer. We have come a long way in 30 years, right? My father never knew a cell phone, TV remotes were the “new thing”, and computers were just starting to make a dent in how we work and live.

In some ways progress has been astounding; in other ways the pace of change is frustratingly slow. Last week a team of MedStar Institute for Quality and Safety colleagues and I met with others from six healthcare organizations from across the country, SIDM leaders, and leaders from the Institute for Healthcare Improvement (IHI). Together we committed to 9 months of intensive work developing a “prototype” collaborative to guide organizations that are serious about improving diagnosis. The SIDM conference that I attended had more poster presentations than they could handle, and the lineup of speakers transcends from gurus in the quality and safety space (Don Berwick, Dave Mayer, and Amy Edmondson among others) to physicians, nurses and health services researchers in the trenches, who are all too aware that missed diagnosis, incorrect diagnosis, and delayed diagnosis remain a looming challenges.

Perhaps I should not have been surprised that when I shared my Facebook “memory”, the comments from friends included new stories of how “we” got it wrong, got it “late” or didn’t listen when they tried to TELL us what was going on with their health. These stories are sources of real dissatisfaction.

The report from our IOM panel suggested that each of us will experience at least one diagnostic error in our lifetime. An important way to help mitigate this reality is to acknowledge that diagnosis really needs to be a team endeavor. The ideal team benefits from patients and families at the center surrounded by physicians, nurses, allied health professionals and others, working together, sharing information, insights, concerns, and successes on behalf of better health for individuals and populations. Watch this space for how to join us on the journey.

I welcome your comments, questions and stories at mailto:[email protected].