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The Beryl Institute invites members and guests to submit posts on patient experience related topics. For guidelines and information on submitting a post for consideration, contact michelle.garrison@theberylinstitute.org.

 

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Top tags: patient experience  healthcare  patient  culture  Leadership  patient engagement  HCAHPS  communication  empathy  physician  physicians  caregiver  compassion  employee engagement  family engagement  healing  Hospital  survey  community  data  Expectations  interactions  pediatric  perception  person-centered care  voice  collaboration  consumerism  Continuum of Care  Customer Service 

Taking the Long View of Patient Experience

Posted By Allison Chrestensen, MPH, OTR/L, Friday, February 16, 2018
Updated: Friday, February 16, 2018

If you’ve listened to the patient experience conversations over the last decade, you know that much of the focus is on what happens inside hospitals (and on hospital grounds) and to a lesser extent, in outpatient clinics and doctors’ offices. And while The Beryl Institute’s definition recognizes the patient experience is shaped by a diverse group of professionals and occurs “across the continuum of care”, most of the operational focus around patient experience is on what happens within the walls of the hospital. My own patient journey, as well as my work as an occupational therapist helping patients to regain independence after illness, has taught me that it’s what happens after a patient leaves the hospital that is perhaps the most challenging part of the continuum of experience.

My first significant patient experience occurred when I suffered sudden cardiac arrest in 2013. I was unconscious during the acute phase of my illness, so my perspective is of the long recovery process, which I view in two separate phases. The first phase took place in the hospital where a team of healthcare professionals cared for me around the clock. There were people who kindly addressed my questions, even the ones I asked no less than four times; who asked how I was doing and seemed to actually want to know the answer to the question; who knew my husband by name and greeted him as they changed the bed linens and emptied the trash; who collected my meal card and patiently listened to my complaints about how a pureed dinner roll tastes nothing like real bread. There was my clinical team to whom my husband and I felt enormous gratitude for saving my life. My physicians thoroughly explained the plan to insert an implantable cardioverter defibrillator (the only treatment option for sudden cardiac arrest), a device that constantly monitors my heart rate and will deliver an electric shock if ventricular defibrillation is detected. I remember feeling very safe and secure—all of my concerns alleviated, my questions answered (or at least the ones my post-coma brain could generate at the time). I was discharged home the day after my ICD surgery.

All of that care and attention came to an abrupt end with the second phase of my recovery, which began once I arrived home from the hospital. The flurry of activity and round-the-clock care stopped, my husband went back to work where he admits he spent more time worrying about my wellbeing than he did on actual work tasks. Soon after I arrived home, I began conversations with my own employer about short-term disability, coverage for my job responsibilities, and all sorts of other details I felt unprepared to address. My friends were raising children, planning vacations, and going after promotions at work. I was fearful of going to the grocery store, afraid that I might collapse to the floor in the cereal aisle while this foreign device in my chest delivered a series of electric shocks.

In that transition time between experiencing a catastrophic illness and attempting a return to normalcy, my husband and I were left on our own to process our experience and its impact on our lives going forward. That, to me, was far more challenging than having my blood pressure taken every hour, waking from a deep sleep for a needle stick, or understanding a 10-page after visit summary.

It was only after I began to adjust to this new reality as a cardiac patient that feelings of resentment that began to overshadow my sense of gratitude for the life-saving care I received. Rather than choosing the best treatment option for myself, I began to feel that I had given consent to the treatment plan my physicians wanted for me. Note there is a significant difference in designing a treatment plan for the patient and designing that same treatment plan with the patient. Granted, in my case, the only other option would’ve been to have no intervention at all, a hard option to consider for a thirty-something-year-old woman who is at risk of experiencing another arrest in the future. As someone who likes to feel in control of her own health and wellness, however, having the opportunity to discuss this admittedly less desirable option with my team would’ve made all the difference to me as I navigated the path of recovery.

My own experience taught me that when the proverbial dust settles, the “what now?” question remains for our patients. This is an important facet of the patient experience, and it is directly impacted by what happens (or what doesn’t happen) during the patient’s time in the hospital. The extra five minutes that the physician or nurse spends asking about a patient’s values, hopes and fears can mean the difference between feeling like a number and feeling like a person. The compassionate actions of the environmental services and dietary staff, the rehabilitation and nursing teams, all create impressions and emotions that patients and families take with them into their recovery. For the patient, these actions can make the difference between feeling powerless to manage a chronic illness or cope with an unexpected health scare and moving forward with new perspective and determination.

This is the “long view” of patient experience—the awareness that our actions as healthcare professionals have far-reaching impact. We become part of the patient’s story. My patient story is about the pain of losing control of my wellness and my decision-making power in the midst of immense gratitude for receiving miraculous, life-saving care from dedicated professionals. It is also about the care and compassion that my care team showed to me and the way that fueled my desire to derive meaning from my experience and to make a contribution in this field. I am a patient. However, a patient is not who I am.

Taking the “long view” of patient experience work helps us to realize the true impact of “the little things”, and it may just help each of us to reach beyond an organizational commitment to excellence and toward an individual commitment to doing good.

Allison Chrestensen is the founder of Tandem Healthcare Solutions, a consulting firm specializing in co-designing experience improvement for patients and staff, using the Experience-Based Co-Design model. Allison brings her perspective as a clinician, patient, and quality improvement project leader to her work and has served in project leader, faculty and advisor capacities for healthcare organizations around the U.S., U.K., and Canada to facilitate building innovative and sustainable models for partnership with patients and community members.

Tags:  care plan  compassion  empathy  patient experience  transition 

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Connecting with Patients is Key

Posted By Tom Scaletta MD CPXP, Thursday, February 15, 2018
Updated: Thursday, February 15, 2018

I think everyone today can agree on the importance of having communication tools to interact with patients and family members. However, in the era of value-based healthcare, doing a good job interacting with patients is not nearly enough.

At my organization, we have created a simple communication tool called G.R.E.A.T.™ that will help inspire a service-minded culture. This service standard helped us align our mission/vision/values with our culture and leads to enhanced patient satisfaction, improved care quality and a more engaged staff. Connecting on a deeper level with our patients and being mindful of their understanding of what is going on are essential components in achieving optimal outcomes.

A key component of the G.R.E.A.T. ™ is the ‘R’ that stands for ‘relate.’ To truly connect to our patients (or their family members), it is essential to have a personal conversation separate from the medical issues (of course, assuming the patient is not in any immediate distress). 

An easy way to create a rapport with patients, across generations, is to ask about one’s aspirations or accomplishments.

  • With younger patients, “What profession are you planning?”
  • With middle-agers, “What is your profession?” and
  • With older patients, “What was your profession?”

Such questions typically leads to some back-and-forth banter that creates a nice bond. You will find you like the patient more … and they will like you more. The content of the conversation is not important though it must be authentic and empathetic. This type of interchange will create trust, the foundation of the people experience, that of both patients and providers. 

These conversations are beneficial not only for the patient but also the providers of care. A great patient experience requires a great provider experience and a great provider experience requires a great patient experience. The closer you get to your patients the further you get from burnout.

I would like to share a story of this in practice. I was working a typical emergency department shift with a great team and had a steady influx of patients all evening. At 8 pm paramedics rolled in with an elderly, demented lady from a nursing home with right-sided weakness that began yesterday. A CT scan uncovered a golf-ball sized tumor with swelling. She had a history of breast cancer so this likely represented a metastatic lesion. Typical care ensued -- fluids, steroids, comfort medications and a call to the hospitalist for admission.

I then phoned the patient's daughter (and power of attorney) to suggest that she and other family members begin discussing how aggressive they wanted the treatment plan to be. The daughter interrupted, "Doctor, could you just go to my mom's bedside and say 'Dr. Peters, you were right'?" After my "Huh?" she explained "My mom is smart and knows her body. She has a PhD in both psychology and religion. Last month, a doctor told us she has progressive, incurable dementia. When he left the room my mom turned to me and said 'Well, yes, I'm certainly more confused but I'm not demented. They just haven't figured out what this is.'"

So, I went to her room, sat down, described the situation, and ended with "Dr. Peters, you were right." She turned to me beaming with pride and confidence and said "I knew it!" 

She certainly did.

I slipped a copy of her CV that I found online into her chart. I wanted everyone to know this amazing woman that all of us were privileged to care for.

Tom Scaletta, MD CPXP CPPS, obtained an undergraduate degree in mathematics and computer science and worked as an computer programmer before entering medical school. He completed a residency at Northwestern and is board-certified in emergency medicine and clinical informatics. Tom serves as the emergency department chairperson and medical director of patient experience for Edward Elmhurst Health. While President of the American Academy of Emergency Medicine, Tom collaborated with the Emergency Nurses Association to create a Code of Professional Conduct. His white papers, “The Seven Pillars of Emergency Medicine Excellence” and “The Calculus of Patient Satisfaction,” were published by Medscape. Tom designed the first patient callback system in 1996 and the first automated means of text/email contact and staff notification in 2012. His models were praised by the Robert Wood Johnson Foundation and Urgent Matters (George Washington University), an organization that evaluates emergency medicine innovations.

Tags:  communication  connection  empathy  patient experience  provider experience 

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Using Shared Governance to Improve the Patient Experience

Posted By Gen Guanci, Thursday, January 4, 2018
Updated: Thursday, January 4, 2018

Those in health care know all too well that the patient experience is a top pain point for executives and therefore a top organizational priority. There is also no shortage of initiatives, programs and activities that focus on improving that experience. Committees and task forces are formed with participation from leaders across the entire organization. Education and action plans are developed and rolled out. Patient experience scores are closely watched for the anticipated improvement. Then, reality often sets it: There is no—or only minimal—improvement. How can that be? And what can be done about it?

What if you were to take the traditional approach to improving the patient experience—the approach where initiatives, programs and activities are developed by those outside the point of care and rolled out to those who must operationalize them—and flip it? Shared governance is a leadership model that does exactly that. In a shared governance culture, staff members are empowered to make decisions that meet a set of articulated expectations shared by leadership. Shared governance has proven to be a highly successful partner in crafting strategies that yield sustained improvements. Shared governance is built on a set of four overarching principles:

Partnership
Staff and leaders work together to improve practice and achieve the best outcomes.

Equity
Everyone contributes within the scope of her or his role as part of the team to achieve desired outcomes.

Accountability
Staff and leaders share ownership for the outcomes of work and are answerable to colleagues, the institution, and the community served.

Ownership
Participants accept that success is largely dependent on how well they do their jobs.

Using shared governance, groups of staff members (councils) are charged with the development of the specifics of the plan to address the opportunities for improvement. Let’s take the desire to have purposeful rounding be a standard of care. While the desired outcome is purposeful rounding, it would be up to the individual councils, groups, departments, or units to determine how this could be best operationalized in their area.  Here are some examples of what could happen when the people closest to the work in each department are empowered to make decisions about how to make rounding purposeful for their specific patient populations.

The Maternal-Child department determines that rounds will be done hourly between 6:00 a.m. and 11:00 p.m., then every two hours between 11:00 p.m. and 6:00 a.m.  They have made this decision to meet the needs of their patients to have a period of uninterrupted sleep.

The Surgical unit decides rounds will be a shared responsibility between the RN and the Clinical Assistants (CA).  RNs round on the even hours and CAs on the odd hours. For the same reasons as the Maternal-Child department, they too decide hourly rounding hourly will be done between 6:00 a.m. and 11:00 p.m., then every two hours between 11:00 p.m. and 6:00 a.m.

The Patient Experience council, made up of a mix of staff members from across the organization (i.e., environmental services, clinical, nutritional services, etc.) work together to develop a meaningful rounding experience for patients and staff members that includes addressing the best practices in rounding conversations. 

The expectation for each of the above groups was to craft a meaningful rounding experience that worked for the patient as well as the specifics of the individual units/departments. The plans, developed by staff members, are supported by colleagues as peer developed and rolled out the plans. Peers create the accountability with each other, and this in turn lessens the need for leadership to “manage” the plan. It also moves organizations from “us” and “them” to “we.” 

There is an ancient Chinese proverb that states “An owner in the business will not fight against it.” Using shared governance to craft a plan for sustainable improvement creates ownership at all levels of the organization.

Gen Guanci is a consultant with Creative Health Care Management where she works with organizations as they build a culture of excellence. Her work with Magnet® and Magnet® aspiring organizations focuses on improving the patient experience, work environment, clinical practice, and patient outcomes. Her expertise in shared governance has enable her to empower staff to generate outcomes that exceed national benchmarks.

Tags:  empowerment  expectations  governance  leadership model  ownership  Patient Experience  rounding 

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When Hospitality Meets Healthcare: A Personal Reflection

Posted By Sven Gierlinger, Thursday, November 9, 2017

It happened to me - first came a tingling in my fingers and toes; and within days, I was paralyzed. A husband and father of two young children at the start of a new assignment with The Ritz-Carlton Hotel Company - I was diagnosed with Guillain-Barré syndrome, a rare condition in which a rapid-onset muscle weakness caused by the immune system attacks and temporarily damages the peripheral nervous system. Suddenly, and for 90 days and nights, I was 100% dependent on my doctors, nurses and therapists.

Believe it or not, I’m actually grateful for this experience, as it showed me that as a patient, you are challenged to heal in many ways – physically, mentally, and emotionally. My experience in these moments helped me understand the power of embedding both service and empathy into the clinical processes that truly can make or break a patient or family experience. Every moment counts. 

My years at The Ritz-Carlton opened my perspective to what guests really want – and it’s much more than crystal chandeliers, marble floors and fancy ocean views. The Ritz-Carlton takes culture very seriously and believes it should be fully ingrained in all its employees, even by memorization. This credo provided the gold standards of service that were the focus of my everyday work, and until this day I can recite each word.

The Ritz-Carlton Credo:  The Ritz-Carlton is a place where the genuine care and comfort of our guests is our highest mission. We pledge to provide the finest personal service and facilities for our guests who will always enjoy a warm, relaxed, yet refined ambience. The Ritz-Carlton experience enlivens the senses, instills well-being, and fulfills even the unexpressed wishes and needs of our guests.

Based on my own professional and personal healthcare experiences, and as the Chief Experience Officer at Northwell Health, I knew I had to look at the experience through a very different lens. We have seen that the hospitality industry has established a precedent of best practices that can directly correlate to the healthcare industry. Let’s take the crossover themes from this credo for example: providing genuine care and comfort, personalization, a warm yet refined environment, and delivering on unexpressed wishes. I often wondered what this same credo would look like if ‘Ritz-Carlton’ was replaced with ‘Healthcare’, and if ‘guests’ were replaced with ‘patients’. 

Let’s read the credo again…

The Healthcare Credo:  Healthcare is a place where the genuine care and comfort of our patients is our highest mission. We pledge to provide the finest personal service and facilities for our patients who will always enjoy a warm, relaxed, yet refined ambience. The Healthcare experience enlivens the senses, instills well-being, and fulfills even the unexpressed wishes and needs of our patients.

Now, isn’t this what we all want and deserve from our own healthcare experience? It’s not only about first impressions; it’s about lasting impressions and creating that consistency in the patient experience. As experience leaders, it is imperative we understand how to enliven all the senses – what patients see, hear, touch, taste and feel. This understanding can greatly affect the patient experience, as well as the overall healing process.

At the end of the day, I think we can all agree that healthcare is about helping people through their most vulnerable time, and there is no greater honor.  So, I challenge each of you to think about healthcare differently. Reflect on this healthcare credo and ask how you can translate these concepts into practice to truly make every moment matter.

Sven Gierlinger serves as the VP, Chief Experience Officer at Northwell Health. With a focus on providing exceptional customer service and delivering the highest quality care, Mr. Gierlinger is responsible for building an engaging, innovative and collaborative culture that drives organizational growth and customer loyalty through the patient/customer experience. He is also an Executive Board Member for the Beryl Institute and a member of the Institute for Innovation, Founding Executive Council. Northwell Health, headquartered in New Hyde Park, New York, is the largest healthcare provider and private employer in New York State. The system serves over 8 million patients in metro New York and the surrounding areas with its 22 hospitals and more than 550 outpatient practices.

Tags:  culture  hospitality  impression  patient experience  personalization 

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How Staff Engagement and Stress Management Can Impact the Patient Experience

Posted By Martijn Hartjes, Monday, October 30, 2017
Updated: Monday, October 30, 2017

One of the major transformations occurring in healthcare today is the shift toward seeing the patient as a consumer. Similar to other industries that are driven by customer service, health systems are recognizing the impact the patient experience has on consumer loyalty, institutional reputation and topline financial results. The business case is clear. And rather than being an industry push, patient experience now has a meaningful pull – 82% of health systems recognize patient experience as a top priority, and 89% of consumers reported that their experience is extremely important, according to The Beryl Institute’s recent research, The State of Patient Experience 2017: A Return to Purpose.

The lesser understood story about patient experience is its potential to improve patient engagement, staff engagement and even clinical value for patients. In my field of diagnostic imaging, the patient experience has been shown to be a critical component to getting the image right the first time. In MR imaging, the biggest impediment to a diagnostic quality scan is patient movement. When patients move – due to stress or discomfort – imaging quality is likely to be compromised. That can mean repeat scans and delayed time to treatment for patients. It can also mean frustration for staff and radiologists and consternation for radiology administrators who need to do more with less. 

Staff Engagement is Key to Patient Experience

A patient’s care experience is directly dependent on the engagement of their caregiver. Staff involvement plays an essential role in how the patient views their exam and subsequent treatment as cited in the Institute’s report that 68% of health systems recognize that highly engaged employees are key to the patient experience. When it comes to a magnetic resonance imaging (MRI) exam, there is a human-to-human interaction that no machine can replace, and technologists are on the front lines of guiding patients and their families through this often stressful situation.

However, if the staff finds themselves overworked, stressed or burdened with reporting tasks or technical complexity, it is the patient who will ultimately be at risk. Having technology that supports a positive patient experience by making the technologist’s job easier can create a stronger patient-staff dynamic. 

Reducing Patient Stress to Improve Imaging Outcomes

As consumers of healthcare, today’s patients are making decisions on where to receive treatment based on their expectations of service and preferences. We are seeing patients choose imaging locations that provide a less stressful situation over those that are far more convenient. Based on our experience, we know patients travel hundreds of miles to experience a more comfortable scanner experience with open scanners, rather than going to a more convenient location with smaller, closed scanners.

In addition to impacting their facility choices, patient stress in MR exams inflicts a high clinical, operational and financial toll, leading to reduced workflow and patient dissatisfaction. When patients feel apprehensive, they are more likely to move and distort the exam. Such motion complications cause 1 in 5 MRI exams to require a rescan, which can cost an institution an estimated $592 per hour, and a $115K loss per scanner every year. In this way, patient comfort is fundamental to guaranteeing high-quality diagnostic images.

One way to reduce patient stress is to humanize the experience by providing consistent communication throughout the process and create an interactive atmosphere from start to finish. Communicating the smallest details, like how the scanner table will move or how long the scan may take, will help set expectations and dramatically reduce patient anxiety. It’s not just the patient that needs empathy and comfort but the patient’s family as well. The Beryl Institute’s research confirms that the majority (80%) of respondents believed patient experience efforts have a positive impact on reducing patient and family anxiety to a great extent.

Letting Patient Experience Lead the Way

Across the industry, patient experience efforts are becoming an integral part of the fabric of care delivery and are being recognized as drivers for measurable outcomes. In the imaging field in particular, real insights from real patients are increasingly important to understanding their needs. By focusing on the people behind the images and by creating a calming, supportive environment, technology vendors and clinicians across the continuum of care can join forces to improving imaging outcomes and clinical value for patients. 

Martijn Hartjes is an experienced healthcare executive with a professional track record in multiple disciplines of the medical device industry. Currently, he serves as senior director, head of global MR product marketing at Philips. In this role, he is responsible for the global MRI marketing function, leading product management, clinical portfolio management and product marketing.

Tags:  care experience  consumer  imagining  loyalty  patient engagement  Patient Experience  staff engagement 

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Changing the Lens: Bringing Medical Records to the Patient Bedside

Posted By Grace Cordovano PhD, Wednesday, August 23, 2017
Updated: Wednesday, August 23, 2017

A patient was recently discharged from an exceptional hospital after a 2-day stay. During those 2 days, he saw endless doctors, attendings, residents, fellows, interns, nurses, nurse practitioners, nursing students, TV and phone service staff, physical therapists, social workers, case managers, housekeeping staff, spiritual chaplains, food and beverage staff, transport staff and discharge planners. Forgive me if I’ve missed anyone. All of these hospital employees play an essential role in a patient’s care at the hospital. There was just one person missing: someone from the medical records department. It’s time to change the lens we are using to view the importance of medical records to patient success and health.

No one visited the patient to discuss the importance of having a copy of his medical records post-discharge and maintaining a personal medical history file. No one verified authorization for the release of medical records. No one asked what medical records the patient needed upon discharge. No one confirmed what doctors needed a copy of the patient’s medical records: like his primary care doctor, his cardiologist or his neurologist. There wasn’t a single person that walked through the revolving door of the patient’s room that mentioned anything that resembled “medical records”. As a private patient advocate, this is no surprise. I’ve accompanied clients to my fair share of hospitals, medical facilities and cancer centers. I’ve yet to see a medical records representative visit with a patient during their time at the hospital. Electronic Health Records (EHR) are not the answer as they weren’t designed with the patient as the priority. Patient portals, if a facility has them, aren’t effectively adopted or utilized and have many shortcomings.

Here’s what should be happening at hospitals. A medical records representative should visit patients in the hospital with a smart tablet. The representative should discuss a patient’s care goals and discuss care coordination with respect to medical records. Medical record authorizations should be pulled up on the smart tablet and patients should be able to electronically authorize releases from their bed. At minimum, the medical records representative should verify the contact information of doctors that should be receiving a copy of medical records for follow-up. All doctors who regularly treat the patient need to have a copy of the medical records for seamless communication, coordination of care, and patient success post-discharge. At discharge, patients should at least receive a copy of every test performed during their stay at the hospital. There is absolutely no reason any patient should be discharged without a basic copy of their records. None. Release authorizations and strategic planning of the use of records for patient success need to be done at the bedside while the patient is in the hospital.  Medical record acquisition needs to become an active part of the discharge process, not a hunt thereafter. Let’s stop this insanity of needing to walk to the medical records office, usually in the basement of a different building than where the patient’s room is, to fill out a form or print one online and mail or fax it.  We need to bring the medical records department to the patient’s room while they are in the hospital’s care: a simple change with potential for profound, patient-centric results.

Grace Cordovano PhD, founder of Enlightening Results, is dedicated to fostering private, personalized patient advocacy services, specializing in the cancer space. She is a firm believer in the continuous advancement and improvement of patient experiences through the infusion of empathic design and thinking into current healthcare paradigms. Follow her on Twitter @GraceCordovano.

 

Tags:  EHR  medical records  patient experience  post-discharge 

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OpenNotes: Doctors, Patients and Caregivers on the Same Page

Posted By Liz Salmi, Wednesday, July 19, 2017
Updated: Wednesday, July 19, 2017

After dating me for only 18 months, my now husband became my health care partner. I was 29. He was 31.

In mid-2008, I suffered a massive seizure, landed in the ER, and a scan revealed I had a mass in my brain. Brett suddenly found himself in love with a 29-year-old gal with brain cancer.

After my first hospitalization, Brett jumped into caregiver mode. If I needed clothes for the hospital, Brett packed the bag. When a nurse missed one last stitch in my scalp, Brett finished the job with tweezers. When I needed help coordinating a complex regimen of medications, Brett designed a color-coded spreadsheet that matched my giant pillbox organized by days of the week and times in the day.

Meanwhile, I jumped on the Internet to research treatment options on PubMed, joined Facebook Groups and Twitter communities for people with brain tumors, and started blogging about my experience for family and friends.

There is no right way to respond to illness. My way was to respond with curiosity. I cared about understanding the how and why of my diagnosis and the what of my treatment. Brett’s way was to respond with unconditional love and support. And he cared about taking care of me.

But there is one thing we both needed and continue to need to be active and engaged participants in my care: access to the details of my ongoing care plan—information that is a part of my medical record and embedded in my doctor’s notes.

Brett and I didn’t even know notes were a thing until earlier this year when a change in health insurance forced me to uproot my care from one health system to another. While in the process of collecting my medical records I stumbled across a large PDF document that revealed an insider’s view of my last eight years of living with brain cancer—my notes.

Doctor’s notes (or visit notes, progress notes, clinical notes) are the most important information in our record. This information is readily available to doctors and other members of the health care team to remind them about a patient’s condition and plan for care.

I received great care from my previous health system, but like 96 percent of Americans, my clinical notes were not shared through the online patient portal. This made me wonder… why hide my notes?

I want this to change—for me, for my husband, and for every patient facing a health challenge or working to stay well. 

OpenNotes is a national movement encouraging doctors, nurses, and other health professionals to share the notes they write with the patients they care for using secure, patient portals, with the ultimate goal of improving the quality and safety of care. Shared notes enhance the patient experience by improving communication and trust, and reading notes helps to empower patients to make more informed decisions.

Access to notes can help caregivers like Brett, too. In a 2016 study*, patients and care partners with access to open notes stated that they had better agreement about treatment plans and more productive discussions about their care, and patients were more confident in their ability to manage their health and felt better prepared for office visits. Even better, care partners reported improved communication with patients’ providers at follow-up.

In less than five years, the OpenNotes movement has grown access to notes from 20,000 to over 15 million people. That number is impressive, but it represents just 4 percent of the U.S. population.

When I, the patient, don’t have access to notes, neither does Brett—the person most invested in my care. I spend about two hours each year with my health care team, and over 5,000 waking hours in self-care or “Brett-care.” Access to my notes could help us remember what we need to do between now and the next appointment with my doctor.

So what’s the hold up? Why don’t more people have access to their full medical record and clinical notes?

Doctors and health systems claim people will not understand their notes, or be afraid of what is written in them. This makes no sense to me. I am already looking for information about my diagnosis on the Internet—shouldn’t my first search be based on information in my own medical record?

My husband and I are the most invested people in my care, and the notes are about me. Any information about my health and health care is important to us, and we want to know about it. We can handle it.

* Wolff J, Darer JD, Berger A, et al. Inviting patients and care partners to read doctor’s notes: OpenNotes and shared access to electronic medical records. J Am Med Inform Assoc (2017) 24 (e1): e166-e172.

Liz Salmi is the Senior Multimedia Communications Manager for OpenNotes. OpenNotes is a foundation-funded national movement advocating for clinicians to share their visit notes with patients via patient portals. She is also a patient who does not have access to her notes.

 

 

To hear more from Liz and about OpenNotes, join us August 29th for the upcoming webinar, The Power of Knowing. You will learn more about the OpenNotes movement and how your health system can participate, and hear from a doctor and a patient about their personal experiences with notes and transparency. 

Tags:  caregiver  notes  Patient Experience  transparency 

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Paws and Presence: The Story of “I’m Here”

Posted By Marcus Engel, Monday, July 17, 2017
Updated: Monday, July 17, 2017

I can’t remember the impact, but I remember the headlights. Then, the pain. The all-encompassing horrors of broken jaws, crushed facial bones and desperate attempts to breathe.  I remember the metallic taste of blood mixed with gasoline. Then…the  blackness. But, how could I know that darkness was permanent? How could I know that I was now blind?

I can’t remember the medics, the crike, the ambulance speeding to Barnes Hospital, but I remember my clothing being cut off. And, I remember Jennifer. 

Throughout that wretched night in the ER, Jennifer held my hand and never left my side. Her presence and her words, “Marcus, I’m here…” were the only things she could have done to help…and they were exactly what I needed.

Throughout the hospitalization and recovery, rehab and 20 years of life, I knew nothing else of Jennifer. Her story is in my memoir and “I’m Here: Compassionate Communication in Patient Care.” But, beyond that night? I knew nothing. No last name, not her position in the ER. Nothing.

Two years after the trauma, as a 19 year old, I found myself in Morristown, New Jersey, training with my first Seeing Eye dog, a black lab named Dasher. Some people measure life in years. I measure life in dogs. Dasher was by my side for seven years. When he retired at age nine, I thought my heart would break. I’d lost my sight, so I thought I knew what loss was…but I was wrong.

Life goes on. We all know that. Dasher’s retirement ushered in another black lab, Carson, who was with me for another seven years. Then came Garrett; a yellow lab who, if you’ve heard me keynote since 2010, you’ll probably remember.

Soon after I picked up Garrett’s harness for the first time, we moved to New York City where I began my Narrative Medicine Master’s program at Columbia University. As I continued keynoting around the country, Garrett was by my side for countless flights, hotel rooms, hospitals and conference centers.    

Then, Barnes-Jewish Hospital, the facility that saved my life, invited me to speak. As always, I told the story of “I’m Here” and Jennifer. Afterward, a member of the patient experience team approached and said words I’ll never forget: “Marcus, we have a surprise for you… we found Jennifer.”

Shock. Disbelief. Confusion. I was nothing short of a blubbering mess as I, for the first time in 20 years, held her hands again. Finally, I got to say thank you.

Weeks later, Jenny and I were interviewed by the St. Louis Post-Dispatch.

The journalist asked lots of questions, including, “How long have you had Garrett? How long do Seeing Eye dogs work? Where will Garrett go when he retires?” 

Seeing Eye dogs work, on average, seven to nine years. Provided Garrett stayed healthy, we would be together around four more years.

“Will you keep Garrett when he retires?” she asked.

“No, I’ll then get another dog and need to focus all my bonding on the new pup. That’s not fair to Garrett, so I’ll find someone who wants to adopt him.”

Jenny practically jumped out of her seat declaring, “I want him!”

“For real?”

“Absolutely, I would love to have him!”

“Done,” I said. “I can’t imagine better hands.”

Last December. I laid on the floor of a hotel room, thanked Garrett over and over for being mine, for keeping me safe and for his unconditional love. Tears fell onto his velvet ears. Then, a knock at the door.

I hugged Jenny, fell to my knees and held Garrett one last time.

As Garrett and Jenny walked out, all I could think of was love. Love. Compassion. Presence. That’s what I received from Jennifer on the worst night of my life…and that’s what Garrett gave throughout his working life. It is a model of what all truly excellent patient experiences are comprised.

Marcus Engel, M.S., CSP, CPXP is a Certified Speaking Professional & author whose messages provide insight and strategies for excellent patient care. As a college freshman, Marcus Engel was blinded and nearly killed after being struck by a drunk driver. Through two years of rehab, over 350 hours of reconstructive facial surgery and adaptation through a multitude of life changes, Marcus witnessed the good, the bad and the profound in patient care. Marcus and his wife, Marvelyne, are the co-founders of the I’m Here Movement, a 501(c)3, which is changing the culture of care with two simple words.

 

To hear more from Marcus, join us August 15th for the upcoming webinar, Presence: Compassionate Communication Through Everyday Mindfulness or September 15th for our Regional Roundtable event in Ontario.

Tags:  compassion  empathy  patient experience 

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It’s Never About The End – Taking the CPXP Exam

Posted By Diane M. Rogers, BA, ACC, CPXP, Tuesday, May 16, 2017
Updated: Thursday, May 11, 2017

Daunting – that’s the word that described how I felt each time I thought about taking the Certified Patient Experience Professional (aka CPXP) exam. It seemed like such a daunting feat, and yet I truly believed it was something I should do – professionally and personally.

Professionally, taking and (hopefully) passing the CPXP exam, there were countless reasons why I thought it was something I should pursue – most predominantly credibility.

Personally, it was overcoming that constant battle in my head that I fight – the fear of failure. You’d think that as an adult, having lived more than half a century that I would be more comfortable with accepting my best self. But alas, finding triumph in simply having the courage to try alludes me. 

Still, this was something that I couldn’t let go. I kept ‘playing the tape forward’ and could feel the disappointment in myself if I chose not to take the exam. But, ‘playing a different tape forward’ I could feel what it was like when I passed – when I called myself a CPXP. There was something empowering, bold and confident in that image that quieted the fear-filled voice in my head just a bit. Still, I wasn’t ready to apply.

I accessed all of the available information on the PXI website. I participated in the CPXP Prep Webinar. I purchased the CPXP Workbook – all in an endeavor to overcome that fear. But still, I didn’t apply.

My fear of failure is a loud, discouraging deterrent to growth and adventure, putting all of what matters on the end result. And this notion of ‘it’s all about the end’ is in such conflict of what I believe and have experienced, as one of my own mantras in life is – “It’s never about the end, it’s always about the middle”.  So, I had to find a way forward – to appreciate the middle, and to celebrate the courage I had in choosing trying.

And so, I called Peggy, my Beryl Institute Faculty colleague, in the hopes that I could find support and a study buddy to bolster my confidence. 

Hey Peggy”, I said. 
“Are you planning on taking the CPXP exam?” I asked.
“I hadn’t really thought about it”, she replied.

Seriously?!? Not thought about it?!? I haven’t stopped thinking about it!  Now what?

“Well”, I said, quietly stepping into that space of vulnerability,
“I think I want to take it, and wanted to know if you would take it with me … I’m afraid I won’t pass”. (Even as I write these words, I am hearing the ridiculousness of this fear and the stifling nature of its implications.)  
And almost immediately, I was calmed, comforted, and catapulted into the ‘middle’. 
“Sure, what the heck”, Peggy responded. 

Peggy and I set up our first prep call 3 months before the exam.  It was clear from that first meeting that we had very different study patterns.  I was very structured. I outlined a prep approach where we used the CPXP Workbook as our guide. I assigned focus areas with specified completion timeframes.  I set up weekly teleconferences for us to review content.  I made sure we had available all of the resource recommendations. And, within each structured step I took, Peggy was right there - encouraging me, supporting me, and patiently tolerating my prescriptive approach. 

We met weekly, reviewing each knowledge domain, often surprising myself by how much I knew. And over time I began to relax. I began to trust myself, my knowledge, my experience, my understanding of the material. The more comfortable I got with the process of preparing and the material, the more confident I got in taking (and passing) the exam.

Soon our study sessions grew more into developing situational exercises and less into memorizing content. I began to appreciate Peggy’s brilliance and curiosity in asking – ‘I wonder how they would write an exam question for that’?  I could feel Peggy’s confidence – it was contagious. I often thought, ‘If she can do it, so can I’!

And as you might expect, this ‘Sure, what the heck’ CPXP prep adventure grew into an remarkable friendship – one filled with respect, laughter and appreciation for each other and the strengths we share individually and collectively.

In October, 2016 I took the CPXP exam… and passed. And as I ‘play the tape backward’, reflecting on the choice I had in front of me, I am grateful for choosing to jump into the middle. The middle was filled with growth, courage, focus, support, encouragement, strengths, friendships and confidence. The middle helped remind me of my best self. And the middle helped to develop me into an even better patient experience professional. 

“It’s never about the end – it’s always about the middle”. 

P.S.  With heartfelt appreciation, thank you Peggy.

P.S.S.  For those of you considering any step forward into a new space of experience – Go for it! Trust yourself, your strengths, and those core qualities within you that make you your magnificent, best self!

Diane works with and supports The Beryl Institute as a faculty member, facilitating virtual classroom sessions, topic calls and workshops. She is also Founder and President of Contagious Change, LLC, assisting healthcare organizations to achieve new potentials. Specializing in improving the healthcare experience, she works with clients to tailor programs and improvement initiatives. She is a certified professional coach, and developer of The hArt of Medicine®, a program designed to engage the clinician in creating therapeutic relationships and improving their communication and empathy skills through a unique experiential learning approach. Diane believes that ‘everyone has the capacity to change a world’. Whether the world is the physical space that we occupy or a moment in an individual's life; we all have the ability to create a positive energy that brings about an amazing change.

To learn more about the upcoming CPXP Prep Course on June 20th in Chicago, click here.

Tags:  Certified Patient Experience Professional  CPXP  patient experience 

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The Dichotomy of Patient Experience Messaging

Posted By Justin Bright, M.D., Friday, May 12, 2017
Updated: Monday, May 8, 2017

I have never in my life met a physician who woke up in the morning hoping that his patients hated him. I don’t know of any doctors who want their patients to have a terrible experience in their hospital, emergency department, or clinic. Yet, every time I am at a patient experience conference, the physicians there are seen as unicorns because they are actively engaged in improving patient experience. The question I hear most often from others involved in service excellence is, “how do we get more doctors to act like you?”

A question I ponder often is, if physicians care about the well-being of their patients so much, why are we having such a hard time getting physician buy-in on patient experience initiatives? If the physicians are already halfway there because they inherently deeply about the well-being of their patients, then why is this so hard!?!?!

I think it’s time that we as patient experience professionals engage in some serious introspection about how we are messaging the importance of patient experience to our physicians. What are your goals as a patient experience leader? What are the directives being handed down to you by hospital leadership? Do you want satisfied patients? Or do you want compassionate, empathetic and streamlined care? Are you leading every discussion about patient experience with stats, survey scores and percentiles? Does your health system make the physicians feel like they are terrible at providing a consistent and excellent experience to their patients without acknowledging just how incredibly complex it can be to actually do so? Are you celebrating the physicians who are doing well?

My suggestion is, you need to drop the term “satisfaction” from your vocabulary. That is not what any of us are trying to achieve. “Satisfaction” or mention of survey data makes doctors go insane. There is no partnership there. No inspiration. No buy-in. Just an adversarial relationship that makes physicians feel like leadership just doesn’t get it. Instead, focus on “experience.” Focus on communication. Inspire physicians with stories – using positive reinforcement to recognize the times when a patient’s experience was incredible. Physicians believe in a duty to their patients. The experience a patient has is the only 100% frequency event in our health systems. Care that does not involve compassion, empathy, and communication is not care at all. In my dream scenario, we are never mentioning satisfaction or scores to our doctors. Yes, the surveys need to continue, but should be monitored in the background by service excellence departments. If we engage our doctors, my hope is the rest will take care of itself. 

My fear is that as patient experience continues to evolve, and as the pendulum continues to swing more towards “Patients First,” “All For You,” and other similar mantras, that we will fail to acknowledge just how difficult this endeavor is for our physicians. Sometimes it feels as if everyone is trying to push the patient experience boulder to the top of the mountain, but everyone is pushing in a different direction. If there were a simple solution, we’d all be doing it already. The key to organizational change is for you as a leader to have a clear goal, clearly delineate a path for your physicians to follow, and then you continue to drive them down that path in order to achieve sustainability. As we continue to look at ways to improve the consistency of physician communication and compassion, I also urge patient experience professionals to look within – how consistent and compassionate is your messaging to your physicians?

Justin Bright, M.D. is the Patient Experience Champion at Henry Ford Hospital in the Department of Emergency Medicine.

Tags:  buy-in  data  patient experience  patient satisfaction  physician 

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