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COVID-19: A lived experience in Brazil

Posted By Isabela Castro, DDs, MSc, MBA, IA, FISQua, Sunday, September 20, 2020

In Rio de Janeiro, family members of COVID-19 patients continue to face the trauma of not having news about their hospitalized loved ones. At the Hospital Adão Pereira Nunes in Duque de Caxias, in the Baixada Fluminense, a patient was hospitalized for 40 days, and during that time, the family was not informed about the patient’s evolving condition. Elias dos Santos is intubated and in serious condition, which was the only information the family could obtain from the hospital. His sister-in-law, Arlúcia Ramos, says she is distressed, having already lost her husband and another brother-in-law to COVID-19. She says that the family goes to the hospital, but no doctor has ever provided current information about Elias' health status. The Director of the hospital, on the other hand, reports that since the moment of hospitalization, the hospital has attempted to contact relatives by phone using the number provided in the patient's record. Regarding Elias' case, she claimed that several times the responsible doctor tried to contact his family, but without success.” (Source O Globo, Journal.)


The first case of COVID-19 recorded in Brazil, in the city of São Paulo, dates back to the end of February. That Sunday night, after listening to news about COVID on a famous TV show, a medical friend in a WhatsApp group commented: “Yes, folks, the COVID has arrived.”


Months later, many new experiences in healthcare have arisen, most of them abruptly and without planning. These experiences culminated in a series of measures – most of them restrictive – and process adjustments that brought countless consequences, some negative, others more positive. Each consequence of the fight against COVID-19 has been a great source of learning for system improvement. Most notably, the ban on hospital visits (a measure totally necessary to contain the spread of the virus) has been coupled with a lack of information on the health status of patients and difficulty in engaging active and compassionate healthcare leadership in Brazil. This remains one of our biggest challenges. The lack of basic resources in the public health system, the waiting lists for a place in the ICU and a cooling fan, allied with the great political crisis that we are experiencing, modulated what was already frightening to a higher level – an unprecedented health crisis.


The story of my family friend, Mrs. Maria, who was hospitalized in a field hospital for 25 days illustrates these compound crises. Maria is 75 years old with melanoderma. She was admitted in early June with COVID-19 symptoms. After visiting a basic health unit, she was transferred to a specialized public hospital. After admission, her family was instructed about the restriction of visits and that all information about the patient’s status would be shared by the telephone registered by the family at the time of admission. The days passed, but no one heard from the patient herself or heard from the hospital about her health status or prognosis. Being elderly, which is a risk factor for more severe presentation of COVID-19, Mrs. Maria required even more care and attention. Eventually, the hospital social worker called without giving the family prior notice or making an appointment to talk to the family. The social worker gave a very poor description of important medical information and told the family she was reading directly from the medical report provided. As a health professional who works in intensive care units, I tried to advocate to ease the family's despair, although I was unable to visit Mrs. Maria myself.


I called the family and recorded their questions, astounded at what it must have been like for them to go more than a week without hearing from their mother or even knowing if her diagnosis of COVID-19 had been confirmed. I was shocked that Maria was still an inpatient without diagnostic confirmation, sharing space with patients whose COVID-19 diagnoses had already been confirmed. After much explanation, we managed to get a doctor to call the family and answer the family’s questions. It was amazing how much calmer the family became after the doctor's call. All they wanted was to have their rights as family caregivers protected – if visits and information were not possible in-person, their expectation was that the information they would ordinarily receive in-person would come through another channel. At a minimum, family access to basic information about a patient’s status should be guaranteed, regardless of social class. 


In Mrs. Maria’s case, one nurse truly made a difference by creating a valuable patient and family experience. Mrs. Maria’s daughter, Simone, called this nurse an angel because, through her own initiative, the nurse broke the rules and set up a video call between the patient and her family, which made the journey much easier for both. Understanding and seeing, albeit in a virtual way, that her mother was alive and well cared for gave Simone new strength to face the days to come. 


I was happy Mrs. Maria’s family had a chance to experience that instance of patient-centered care, but I confess that I was not surprised because I know so many sensational nurses who always demonstrate such compassion for their work. I later had the chance to speak to this nurse, and she reaffirmed my faith in the healthcare system with her mutual commitment to improve it. Mrs. Maria was discharged days later, and today she is doing well at home with her family, monitored on an outpatient basis. 


The angel nurse, Beatriz, broke the rules to infuse compassion into her role, and that had an immense impact on the family; she will always be remembered by Mrs. Maria’s loved ones.


Even in the face of a pandemic, we are not helpless to improve healthcare.


We, too, can identify vulnerabilities in our small universe and go beyond the care plan with the larger goal of system improvement. This should be our everyday mantra.  These are the lessons from Brazil and the Brazilian people: in the absence of support, we still have compassion. In the absence of a fair and equitable system, we have each other. 


Isabela Castro has served 7 years in the Brazilian Air Force as a Specialized Dentist and 10 years at United Health Group as a Specialized Dentist/Consultant for innovation and patient experience initiatives. Castro’s experience varies from public, private military hospitals and home care to healthcare operations and management. She’s been involved with quality improvementrisk management and innovation initiatives and is well versed in working within new cultures, matrixed leadership teams and takes pride in not accepting the status quo. Castro is anactivist with the worldwide movement What Matters to You? (WMTY). She serves on The Beryl Institute’s Global Patient and Family Advisory Board as well as on the Planetree International Patient and Family Partnership CouncilCastro also serves the Patient Centered Care Community of Practice at International Society for Quality in Health Care (ISQUa). Today she speaks on patient experience issues, blogs and consults in these roles.


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Getting the most out of your Patient Advocacy Data

Posted By Regina M. Winters, Friday, September 11, 2020

In the world of healthcare where science, research and evidence reign supreme, it can oftentimes be difficult to serve as a Patient Advocate. Often seen by even the most ardent supporters as a “soft” department, the use of data can be the catalyst that brings the work of Patient Advocacy to the leaders’ attention and thus a seat at the coveted “adult table.”

The truth is, Patient Advocates live by regulations and data: the Joint Commission, Centers for Medicare and Medicaid, the Departments for Public Health; all of these agencies regulate the work of the advocate. The documentation of an advocate is crucial, and therein lies a wealth of data. Here is how data positively impacted one Patient Advocacy team and got the attention of leadership.

Having recently switched to a new data system and hired a Business Analyst, Augusta University Health’s Patient Advocacy Department went to work sorting through the mounds of data they had collected for years. Data that had never been seen by leadership was now being compiled and trended through charts and concise reports. Themes and trends were now laid bare, and assumptions were challenged. Things that were presumed to be an issue were not, and projects and processes that were thought to be seamless revealed cracks. After analyzing and sharing the data, a significant issue was clear: medication refills in the medical practices were an issue. In addition, clinic call backs were a problem. After reviewing the issue using complaint data, the leadership went to work on establishing a Patient Services call center, a large portion of which was dedicated to managing prescription refills. Since making that change, the category of complaints related to prescription refills has all but disappeared. The solution got the attention of Quality leadership, physicians now had more time for patient care and the organization at large saw the improvement as a win. Without the data from the Patient Advocacy team, this would not have happened.

Call to Action: Work on using your Patient Advocacy data in new ways. Follow this three-phase plan to elevate the importance of data in your organization.  

Phase I: Get the data out there

Start sharing data as soon as possible. Create basic reports that give an idea of what is happening in the organization. Grievance data is already required, so add compliment data or perhaps quick and easy reports on top categories or high impact areas like Emergency Departments. Once people begin seeing that data is available, they will begin wanting more and asking for other information. Oftentimes, when people ask for reports, it becomes clearer HOW to report it.

Phase II: Analyze the data at a high level

Look for trends. Even if the organization does not have an analyst available, look at the top three categories and then dive into those. What are the top communication issues? Where are they happening? Report out on these trends at Quality Councils and call attention to any issues that impact patient safety.

Phase III: Tell a bigger story with more data

Mine the data for the gold that is right in front of you. When issues arise or are reported out in areas such as Quality Councils, go to the data to see if it supports the issue or reveals insights. Review data side by side with HCAHPS, survey comments and employee engagement data. Data tells a story, and no story is more compelling than the data built upon the voice of the patient.


Regina M. Winters
Manager, Patient Experience
Center for Patients and Families
Augusta University Medical Center

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Time to change: Calling for Advocacy

Posted By Mecciya Majrashi, Wednesday, September 9, 2020

It was April 1, 2020, when I received a call from a relative of a patient who was just diagnosed with cancer seeking emotional support and asking for instructions about how to deal with the complications after the first chemotherapy cycle. The following week, more messages followed on Twitter asking various questions related to the cancer patient’s journey, as most of the hospitals had suspended routine services during the COVID-19 pandemic. Two remarkable events occurred during this period. One patient’s treatment plan was dramatically affected when she was unable to travel outside of the Southern region for her scheduled chemotherapy session in Riyadh due to COVID-19 restrictions. In another event, a patient was informed that her physician was infected with COVID-19 and unable to treat her. Unfortunately, the patient was not provided with any information as to where to go, who to see, or when to call to receive healthcare. Both of these events are unsafe and could lead to patient harm. It is crucial that we as patient safety leaders acknowledge that adverse patient safety events are still occurring in our healthcare system during these unusual circumstances. Most likely not decreasing, but increasing.

Motaafi, The Cancer Survivor Endowment, recognized a gap in the healthcare system: patients required information and support in their cancer journey but were not sure where to turn during COVID-19.  Motaafi is committed to the role of advocacy for both healthcare workers and patients. We believe we are all partners in this world, not only during times of a pandemic but through the entire healthcare journey. Also, our message to all the world is that we (decision-makers and healthcare workers) are human and at any time could be in the position of being a patient. Furthermore, the boat which carries us might be floating or sinking if we do not work together towards achieving the required healthcare goals.  

As cancer advocacy leaders, we acted with a fierce urgency to call this safety crisis what it is: a global public health emergency. Moreover, we have no options when it comes to a crisis but to collaborate. During this pandemic, unfortunately, we ascertained that advocacy had not been an easy process for either patients to self- advocate or for family members to advocate for their loved ones. Thus, COVID-19 has exposed weaknesses in our healthcare system, and we can take this opportunity to learn and improve.  

To address this situation, Motaafi has developed a long-term advocacy strategy that began on May 8, 2020. The campaign goal was to address the healthcare needs and concerns raised by cancer patients and their families through engagement, empowerment and advocacy. Some of the issues conveyed were access to consultations regarding how to manage chemotherapy, emotional support, recovery and surgery procedures, to name a few.

We initiated the cancer advocacy campaign remotely with the collaboration of stakeholders from governance bodies, healthcare providers from different specialties, patients, relatives, media activists and the community from various countries and backgrounds.

The advocacy strategy addresses the issues of cancer management, recovery, treatment and support by establishing three programs (see figure below, Cancer Advocacy Campaign during COVID-19). First, six electronic visits were offered by psychologists and social workers who provided emotional support, information, examples as to how to break the news and reviewed the stages of the grieving process. The second program provided eleven support group sessions led by oncologists, psychologists, social workers and peers (patients with cancer) focusing on the patient and family cancer journey, such as what to expect and communications. Seven programs for Thursday guest were offered as a third support area, which was co-led by oncologists and cancer survivors, presenting various topics followed by a question and answer session. The sessions provided a wealth of insight and hope. A total of 11,321 people participated, a number well beyond our expectations of 5,000. The level of participation distinctly illustrates there is an appetite, a readiness, a need and the desire of patients and families to be empowered. 

This incredible journey to develop the campaign took two months with daily and weekly activities, which would not have come to fruition without the time and efforts of all in the preparation, communication and coordination with a multidisciplinary team for oncology patients. It was well worth it. The extraordinary results showcase three programs that aimed to address the needs of cancer patients and their families. We need to recognize that many other health advocacy groups that belong to non-governmental organizations also made great efforts during COVID-19. Passion was moving us forward. Decision-makers need to use this valuable resource, insights and engage them right now! Never delay it to tomorrow.

It is imperative that government agencies, policymakers, planners and managers, advocacy groups, and consumer and family organizations with their considerable influence as citizens, consumers, regulators and payers use these examples to drive change to move cancer patients' agenda forward. These strategies can be integrated and provided for others, not only for cancer patients and families.

Reducing preventable harm and improving access requires a collective call for advocacy and all of us working collaboratively towards this goal. Policymakers and healthcare leaders must take a leadership role by engaging patients and families as critical stakeholders in co-designing, co-producing, co-assessing and co-delivering such programs within our healthcare systems. In other words, with them, not for them. Empowerment and advocacy are vital to the healing process.





2.     Advocacy Heals U Paperback – October 1, 2015, by Joni James Aldrich  (Author), Christopher Jerry (Contributor)



Ms. Mecciya Majrashi

Assistant Manager of Patient Empowerment

Motaafi Endowment (Cancer Survivor)

Saudi Patient Safety Center, Riyadh


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Putting the Patient First During a Pandemic

Posted By Lara Goorland, Friday, September 4, 2020

As the calendar approached the year 2000, people around the world planned for the worst; they took money out of the bank, stockpiled food, and prepared for chaos and the unknown. Twenty years later, we were not nearly as prepared for the COVID-19 pandemic, but the disruption to society and traditional health delivery was magnitudes greater. 

PWNHealth (PWN) is a virtual care company and has been very active during this time, enabling access to testing and patient education while maintaining best in class patient care. In fact, we have played a significant role in nationwide efforts to facilitate testing, accounting for almost 5% of all U.S. testing to date with a myriad of partners across the country.

In order to understand the impact COVID-19 has had on health delivery, we conducted several exploratory studies, on the one hand exploring patient experience, and on the other, physician interactions and how they impact patient satisfaction.

To evaluate and improve the experience of patients, we sent a follow-up survey to more than 3,000 individuals who had ordered testing and completed a call with a physician after receiving their results. Every patient can speak to a physician throughout the process for additional information, education and direction on next steps in their care. The survey was designed to help us better understand a patient’s journey throughout the testing process and capture specific feedback on the telehealth session.

Results clearly demonstrate that patients appreciated being able to order testing, obtain education and speak to a physician from the comfort of their own home without having to risk exposure to COVID-19 themselves or put healthcare professionals at risk.

  • 77% of respondents reported this was their first time using a telehealth service.
  • 94% of respondents reported that they are equally or more comfortable with using a telehealth service as they are with an in-person visit.
  • 95% reported that they would use it again for a future healthcare need.

Patients who had never used a similar approach before to obtain care were very satisfied with their experience, underscoring this model as a viable alternative and providing further momentum toward care delivered out of the clinic.

On the physician side, we wanted to assess training, specifically around the patient experience. Traditionally, physicians have been evaluated on their bedside manner; however, there are some differences in a virtual setting, such as how to establish a relationship, optimizing effective communication and ensuring clinical best practices. We have developed and require that all our physicians complete a “Webside Manner” training as part of their onboarding process. This training went into high gear as we expanded our network by 48% to handle the increase in COVID testing volume.

After completing the training:

  • 96% of physicians indicated that the training helped them to establish relationships with patients
  • 100% of physicians reported that the training helped them communicate effectively with patients and provided useful information on policies and regulations.

Post training, we also saw an improvement in patient feedback across the board, including our Net Promoter Score. These increases can be attributed to equipping providers with the tools needed to operate effectively in a virtual environment. Additionally, in order to evaluate our physicians in a standardized way, we implemented scorecards to review their work and provide feedback in areas such as clinical compliance, responsiveness and communication with internal staff as well as on patient feedback.

Telehealth has been instrumental during this time and has become more readily accepted. COVID-19 has in many ways acted as a tipping point for telehealth utilization. Providing the fundamental tools for a physician to be successful in a virtual environment and monitoring and following up on patient feedback has never been more important. Our data reveal that we can have a great impact on both physicians and patients in this care delivery model.


Lara has been with PWNHealth since January 2017, and currently is the Senior Director of Clinical Operations. Over the past 13 years she has held a variety of positions in the healthcare field.  She has a passion for healthcare, improving access to care, and enhancing the patient and physician experience.

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Becoming PROs at listening to patients.

Posted By Sheri Winsper, RN, MSN, MSHA , Thursday, August 27, 2020

Fully understanding the quality of care we deliver and how we might improve it is critical to providing the person-centered care that leads to better health outcomes. For too long we left the patient’s  perspective out of our measurements of quality, looking at clinical outcomes through a narrow lens that failed to capture a wider range of patient conditions and experiences. Fortunately, the healthcare community came together, and National Quality Forum (NQF) helped to develop guidance to ensure Patient Reported Outcomes (PROs) offer unfiltered patient perspectives to drive quality improvements. This collaborative effort, started in 2012 and refined ever since, has the promise to dramatically improve the quality and value of healthcare when adopted system-wide.

PROs surface the patients’ voice and empower them in their treatment, filling a communication gap that may exist between doctors and patients. The Food and Drug Administration (FDA) defines PROs as a “report of the status of a patient’s health condition that comes directly from the patient, without interpretation of the patient’s response by a clinician or anyone else.” PROs are collected via PRO Measures (PROMs), questionnaires that paint an accurate picture of the patients’ mental, physical, and/or social health. For instance, the metric PHQ-9 is a PROM that focuses on recognizing and identifying a patient who may have depression. A higher PHQ-9 score could help clinicians determine if the patient would benefit from anti-depressants or other therapies/treatments. The PHQ-9 creates an opportunity to capture important information that may have been missed without direct input from the patient. 

NQF has a longstanding history of bringing diverse healthcare experts and patient advocates together for consensus-based review of measures for PROs. In 2012, the Department of Health and Human Services funded NQF to facilitate collaboration on developing, testing, endorsing, and implementing PRO performance measures (PRO-PMs), which are based on aggregated data from PROs. That resulted in our report, Patient-Reported Outcomes in Performance Measurement, which spurred the use of PRO-PMs to improve quality in patient care. Today, NQF endorses PRO-PMs developed by healthcare stewards and stakeholders for accountability and performance improvement.

As part of our commitment to continuous quality improvement, last year NQF convened a multi-stakeholder Technical Expert Panel to identify best practices in selecting PROs and collecting and applying data. In 2019, NQF published the Patient-Reported Outcomes Environmental Scan summarizing the panel’s deliberations and findings. NQF continues to do more research and work in the field of PROs, PROMs, and PRO-PMs to determine the clearest, most accurate way to hear and act upon the patient’s perspective regarding what health outcomes are important to them. A final report will be released in early September.

Fully understanding patients’ health, outcomes, quality of life, and experiences are critical to activating them as equal partners in healthcare decisions and driving measurable health improvements together. Care must be informed by those we care for; and many healthcare stakeholders agree on the importance of PROs. Without patient reported outcomes, we miss the opportunity to provide the best possible person-centered care.


Sheri Winsper, RN, MSN, MSHA leads the careful evaluation and endorsement of consensus standards, the Measures Application Partnership (MAP), and Measurement Frameworks central to NQF's ongoing mission to drive measurable health improvements so that every person experiences high value care. With more than 20 years of health care experience, Sheri has successfully provided service oriented strategic, operational, and clinical quality and patient safety leadership through the design and implementation of innovative methodologies in quality measurement, improvement, and culture of high reliability safety initiatives at the national, integrated health system and individual hospital levels.

Winsper is a registered nurse with a Master of Science in Nursing Administration and a Master of Science in Health Care Administration from the University of Texas at Arlington in Arlington, Texas. She received her Bachelor of Science in Nursing from Oklahoma Baptist University in Shawnee, Oklahoma.

About National Quality Forum

The National Quality Forum (NQF) works with members of the healthcare community to drive measurable health improvements together. NQF is a not-for-profit, membership-based organization that gives all healthcare stakeholders a voice in advancing quality measures and improvement strategies that lead to better outcomes and greater value.


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Caring for the caregivers: How to manage stress and trauma in the COVID-19 era

Posted By Christina Triantafyllou, PhD, Thursday, August 20, 2020

The COVID-19 outbreak has created extraordinary new pressures, risks and challenges, not only for entire communities and countries, but especially for healthcare systems and healthcare staff. During the pandemic, caregivers have facedinconceivable physical and psychological challenges that will affect individuals in manifestly different ways. This situation is further complicated by changes to their once-familiar clinical environments and routines in the form of emergency plans, procedures, and workflows introduced to prevent transmission.

At the outbreak of COVID-19, many hospitals were not adequately prepared to protect their staff and safely care for patients, leading to an increased risk of stress, burnout, and depression for healthcare workers. In the U.S., data from NewYork-Presbyterian Hospital indicates that 57 percent of healthcare workers reported acute stress, while 48 percent exhibited symptoms of depression. Physician suicides have even been linked to COVID-19 pressures.[1]

Especially at a time like this, the ability of healthcare leaders to cope with the trauma and stress of their employees is crucial. Dealing with this situation will be essential for the viability of healthcare organizations, as the well-being of all involved will influence the future of patient care, the patient experience, patient outcomes and team performance.

But how can this be managed amid the storm of all the other challenges the COVID-19 pandemic brings?

Siemens Healthineers partnered with Dr. James Gordon, CEO and Founder of the Center for Mind-Body Medicine (CMBM), to create a white paper that analyzes the current situation and suggest applicable relief strategies:

1.     Incorporating mind-body techniques as self-care for stress and trauma relief

Mind-body techniques like mindful breathing with the abdomen soft and relaxed, biofeedback, and guided imagery have been shown to be effective antidotes. The value of incorporating self-care techniques has been well-documented for example at Aetna, an international health insurer, where the implementation of stress and trauma programs for employees led to a change in culture and subsequent increase in productivity.² 

2.     Benefiting from expert-led small groups

Being a part of a facilitated group significantly enhances participant outcomes. The majority of participants said that the techniques they learned gave them the balance they needed to deal with the fears and challenges of the pandemic, and that the group has been their single most important source of support. They found it far more comfortable to engage with a group of peers than in individual sessions in which they often felt objectified and stigmatized.

3.     Sustaining mind-body health by training the trainers

Ambassadors learn the science of mind-body medicine, practice the skills themselves and will then receive additional training on coaching to implement self-care strategies throughout the organization. Eskenazi Health (Indiana), one of the largest safety net health systems in the U.S., created a comprehensive wellness program for more than 4,500 employees and more than 100,000 patients in their care. More than 300 staff have been trained as trainers for self-care strategies. That implementation was so efficient that the organization saw a substantial reduction in their previously escalating healthcare costs which went from 5% growth per year to just 1% per year after the program was implemented.³


It is essential that we understand the stress and trauma that healthcare workers experience and take steps to deal with it. Taking steps to safeguard their health and well-being not only helps them safely navigate their own way through this crisis, it also helps ensure that patients can receive the care they so urgently need!

You’ll find suggestions for strategies and best practices on how healthcare organization can effectively manage caregiver stress and trauma relief here:







Christina Triantafyllou, PhD, is the Vice President Head of Improving Patient Experience at Siemens Healthineers, with a strong ambition to improve the sum of all interactions that influence patient perceptions across the continuum of care. She holds a PhD in the field of Medical Physics from Kings College, University of London, UK, and prior to joining Siemens Healthineers, she also held appointments at Massachusetts General Hospital, Harvard Medical School and Massachusetts Institute of Technology (MIT), Boston, U.S.


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Collaboration Leads to Understanding and Action

Posted By Stephanie Hillman, MNPL, Friday, July 31, 2020

Healthcare collects a lot of data. CAHPS surveys, focus groups, financial reporting, market share. So. Many. Data. Points. So many opportunities for applying those data. Yet, often readers of the data ask: “What does that mean? What should I do with that information?

Humans want to do the right thing. You want to take the next best step. In healthcare that can mean that you want to deepen engagement with the team, with faculty, with patients. I heard this question nearly every week over many years of listening to and working with teams to improve the experience for patients, families, and the people who served them. Clinical leaders asked me, frontline team members asked me, doctors asked me, administrators asked me.

Often, my response was: “Ask them.”


Reading The Beryl Institute's Human Experience 2030: A Vision for the Future of Healthcare, I was drawn to the Foundational Needs outlined. This one stood out: “Reframe how experience is measured from lagging to real-time indicators, ensuring a holistic assessment of safety, quality, service and engagement to demonstrate the value of care.”

Later Jason describes an action that spoke to the heart of my work over the years: Reframe consumerism to patient and consumer partnership. The request to “transform power dynamics by a global commitment to (1) partnership, where patients, families and consumers are actively engaged in co-design…” led me to write this.

I want to offer you a method for partnership. This is not a step-by-step proposal deeply steeped in the co-design process. I leave that work to others. This article offers some examples: Bring in user experience designers who have done this before. They work magic!

I like to say that data informs, and stories persuade. Earlier I listed a few types of data organizations collect. When you look at the results, you’re reading survey percentages, percentiles, mean scores. What comes next? You want to take the right next action. You want to make sure patients, families, employees, feel your commitment to them.

This process helps make decisions informed by end users. It is one way to include patients and/or family members so that your solution integrates their feedback. I would like to help you overcome barriers to trying this method, which in turn will reduce burden placed on patients and families to give feedback and has the potential of improving patient outcomes.

You can find the story, and that story will compel you to act.


I will use a COVID-19 example to bring a process for gathering qualitative insights that complement the problem seen in the quantitative data. You can listen to patients, families, or your team members every day.

They are in your waiting spaces, your cafeteria, your exam rooms, your inpatient rooms. On nearly every day, and in nearly every setting. Or they are a phone call away. Anyone who works in healthcare can talk with a patient on any day they want. Hint: most people answer the phone because their healthcare organization is calling them; it’s not a call they block. Your will, not their availability, is the first step to hearing the story.

Even while living in the COVID-19 pandemic, patients and/or their families are available. They want to help. What I heard from every single patient or parent or family member was that they were happy to give their input and feedback to make it better for the next patient. Hands down. Every single person.

Someone is ready to give you feedback on your problem. In this case, the problem is clear because of a survey result or a recurring patient complaint. It’s based on quantitative data.

Now we’ll look for the qualitative story, set in an example based on COVID.

The Story

The overarching problem is defined by the survey; the nuance of that problem comes from the mouths of patients to your ears. Their story shapes your solution.

At the beginning of COVID-19, what’s was most important to patients? Their safety – not getting the virus. What did this look like to them? Was it masks, staying in their car until the room was available, having appointments online? Several organizations added a question to their patient surveys. Many then asked to confirm or better understand patient needs. You can do this with an unlimited number of topics that come up in your myriad of data sources.

Possible Questions

  • Regarding handwashing: What is important about handwashing? Did clinicians wash their hands? Does that matter to you? Why?

  • For cleanliness: How clean were the rooms? The hallways? In what way? What did you see, or not see, that stood out for you?

  • For triage: What did you notice about how patients were put into the rooms? How important was it to know there were separate areas for positive, negative, or suspected COVID infections? Why does this matter?

  • Overall safety: What is important for you to feel safe during this visit?

One family mentioned that they weren’t sure the doctor’s hands were clean because they didn’t see her wash them. This family lives in a multi-generational household and knows to limit contact outside their home. They must keep Grandma Maria safe – she cares for the children while the parents work. This story offers the why for every clinician to wash their hands in front of the patients.

Patients provide the context through an illustrative story that highlights what’s important to them, what they value. They’ll freely share what it meant to them as a patient, or as the caregiver. Their story cuts through the complexity of healthcare, focuses your intervention, and identifies actions that you can replicate across care settings. Consider using their words - best done in cooperation with health educators - to identify plain language for signage and materials. This will help improve health literacy and provide the safe environment they deserve.

Given the decreased number of visits due to the pandemic, we must retain the trust of patients and families during the crisis. They may have to come back for another visit. We want to assure them that we’re doing everything possible to keep them healthy when in our care. We know they will tell friends and family how safe they felt. We need to discover their stories and run with their solutions.

You can you do this. You can approach patients, their families, and team members, to ensure better problem solving. As you try this, please consider these topics: fear; overburdened patients, families, and caregivers; permission; and brevity.

Overcome Fear

People may exhibit some unease with this suggestion. That’s what I witnessed. I acknowledge that I am an extrovert, but it didn’t seem to just be introversion. People were expressing fear. I soon realized it was they were worried about hearing something they couldn’t fix. Feeling ineffective is hard, for sure. Done too often, it can lead to moral distress, which is an element of burnout in healthcare and a reason why many nurses, doctors, and other people are fleeing the healthcare system. (Source: While this topic definitely needs attention, that is not what I am here to address today. What I invite you to consider is that asking families doesn’t always lead to distress, and it can be the shortest path to hear what they value.

A similar practice – with the related worries – is to give your business card to patients. This story of Dr. Feinberg, that I heard years ago while he was CEO at UCLA, was about leaving his card with thousands of patients. He chose to interact with patients, families and the care teams to uncover solutions. He relied on their partnership and feedback on the potential solutions to the multitude of problems. (source: He felt those interactions grounded him in his call to serve within healthcare. These interactions may bring you a “joy-in-work” moment – and highlight something that reminds you why you choose to work within this industry.

Reduce Burden

Another reason to ask patients who are right there in front of you is to reduce their burden of responding to another survey, focus group request or meeting invitation. I had a personal “a-ha moment” when I read this Vox article, “Unpaid, stressed, and confused: patients are the healthcare system’s free labor,” (source: Sarah Kliff shares her story about her painful navigation of the healthcare system due to a chronic foot injury. Many of the issues remain valid. I would like to think that most of us want to lessen the burden of healthcare on our patients and families instead of increasing it. Creating a real-time process for gathering input is one way to reduce burden.

A quick story: A child life manager led a team to conduct a trial for a blood draw clinic with autistic patients. They had patients come at a less-busy time of day, reduced lighting, and minimized distractions. She was keen to know what families thought. She called me and asked about how to collect this feedback. I encouraged her to call them, and she did. After doing that, she reached out to share that it was the best 90 minutes she had spent in a long time. She learned so much on how to improve lab flow for the next trial. Joy and a better process.

Ask Permission & Keep It Short

You are ready to try this. Please start by asking permission. Something like, “Do you have a couple minutes? We have this problem and are trying to figure out the best solutions for families like yours. I would like to hear what you think.”

If they say ‘no,’ that’s alright. They have a choice. Thank them for their time. Find another person. It’s best if that person doesn’t look just like you.

Ask your question. You can pose up to three. Listen to their responses. Write down key words and phrases. Show them that their words matter to you. Jot down any non-verbal cues you see.

Set a silent timer and keep it to less than 5 minutes. Respect their time.

Thank them.

Now, ask up to four more people. It’s likely you’ll start seeing patterns, hearing similar words. If you don’t have any repeated answers, ask five more people. If you still don’t have a pattern, you may be asking the wrong questions. Do some reflection: “does this question give me insight into what is important to my users?” and “are they providing feedback on something I am willing to change?” Use your own reflection to revise the question and try again.

Make It Happen

This process can reduce burden on families, even if it’s a tiny bit, and it should identify solutions you could never anticipate. You’re not living the experience from their perspective. It could bring a bright spot to your day. You may empathize more after hearing their stories. It will show that you care about them and value their feedback. It may help them have more confidence to come back next time.

Your problem doesn’t always require patients to do surveys or to attend another meeting. They will share their stories with you IRL. Don’t be afraid. Don’t spend too much time making up reasons you shouldn’t do this. I urge you: ask them when they are right there. And, let me know how it goes! 


Ms. Stephanie Hillman is a healthcare leader who has successfully developed and implemented systems that help organizations scale for growth and long-term success. Through the collection of quantitative data and qualitative narratives, Stephanie advises leaders to understand – from the user perspective - opportunities for improvement and to replicate best practices ascertained from exemplars. Stephanie was a founding member of a national pediatric experience collaborative that catalyzed action throughout the US to improve the experiences for patients, families, and the clinical teams who serve them. Last year Stephanie started her own consulting practice called PrairieWood Consulting, LLC, which recognizes her roots from the North Dakota prairie and her professional career in the beautiful Pacific Northwest.

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Junior Volunteers

Posted By Andréa Kennedy-Tull , Sunday, July 5, 2020

Like many of our healthcare colleagues, COVID-19 forced us to evaluate the relevancy of volunteer services.  IMarch, we suspended all volunteer activity throughout our system.  It was then that we recognized the potential of maintaining significance by pivoting to a virtual platform in order to maintain engagement with our staff and volunteers.  


Out of this realization, we created a virtual summer junior volunteer program.  We limited the program to 100 participants who had applied for our on-site program.  We then created a skeleton of what the program would look like and fleshed out the content and logistics of bringing it to life.


The program requirements included the following components:


  • Participants would contribute 50 hours of volunteer time. 

  • The program would be eight weeks in duration. 

  • Completion of online application, virtual interview and online orientation.  (4 hours)  

  • Program structure would have three key aspects: 


  • Leadership:  Mandatory weekly meeting with a volunteer manager.  Participants discuss competencies designed to help them develop skills to become better leaders.  (8 hours) 


  • Career Exploration:  Virtual speaker series with individuals throughout the organization speaking about different clinical and non-clinical healthcare professions. Junior volunteers are required to attend at least eight of these sessions.  (8 hours) 


  • Service:  A combination of mandatory and elective activities the juniors are required to complete.  A core service kit was provided that included materials for crafts that, would be distributed to our patients and staff. Materials to make masks, healthcare awareness event ribbons and greeting cards were the main items in the kits.  Juniors also partnered with our patient liaisons to complete one hour of virtual patient visits.  Personalized e-Greetings were sent to patients after visits.  The service component also included a list of optional service projects the participants could complete. With management approval, they were also given the opportunity to create their own service project.  (30 hours) 


  • All aspects of the program were conducted virtually.  Interactions with the managers, training and events were all completed virtually, typically through WebEx.  Delivery of kits and their return were all done in a contactless manner.  


The program has been favorably received.  After a virtual patient visit, a junior commented, “I enjoyed the experience…it gave me a front row seat to experience interactions between staff and patients and how best we could meet the patients needs.”  nursing administrator commented, The program is awesome!  It's innovative, educational, and engaging for the teenagers Similarly, a physician noted that the speaker series “has allowed the teenagers the opportunity to get a real-life perspective on different professions.” 


Participation at events and engagement with the service activities continues to be high.  There have been several lessons learned by our team:


  • Team Building:  Collaboration by the team was crucial.  The collective synergy that resulted from creating this innovative program highlighted the individual strengths of each manager for the greater good of our program and organization. 

  • Technology:  Virtual volunteering will be a permanent part of how we will provide services to our organization.  The technology learning curve was quick and steep, but manageable and necessary.   

  • Innovation:  While the external circumstances were not ideal, it has re-energized our thinking, forcing us to think more creatively about how we provide services.  Additionally, this new model has created excitement in our participants as they were being engaged in a new and different manner.


At a time when our clinical colleagues have been forced to provide care in a different and more innovative way, this virtual junior volunteer program has added credibility to our program, heightened awareness about our profession and laid the foundation for future innovation in the delivery of volunteer services.   

Andréa Kennedy-Tull is the Director of Patient Experience and Operations at Ben Taub Hospital in Houston, TX, part of Harris Health System. She holds a master’s degree in Business Management and a bachelor’s in Business and Spanish and is a certified administrator in Volunteer Services. Andréa has 25 years of experience in healthcare in the fields of Human Resources, Patient Advocacy and Volunteer Management. 




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Family Caregiving in the Era of COVID-19

Posted By GPFAB Members, Friday, June 5, 2020

For family caregivers, especially those of us who care for our loved ones with cognitive challenges like Alzheimer’s disease or Autism, COVID-19 is a worst-case scenario: a perfect storm of stress, chaos, and a virus that dictates our every move.

The caregiving universe changed in a flash, with little time to pivot or adjust to a new normal. Suddenly, the daily routines that provided some semblance of calm and well-being simply imploded. Access to home health, adult daycare, preventive care visits, and other critical services we use every day practically disappeared in most communities. Even worse, many medications used to treat chronic illness are in short supply, like hydroxychloroquine, used to treat lupus and rheumatoid arthritis.

Caregivers who provide care at home often have to leave their homes to obtain supplies or medications or wait many days for them to be delivered (in communities that have this luxury) due to the volume of home-delivery right now. This creates a scenario where caregivers are repeatedly visiting grocery stores and pharmacies and putting themselves at risk, which in turn, puts the people they care for at risk.

To make matters worse, we can’t visit our loved ones who reside in long-term care facilities, whose care we oversee and monitor on a daily basis, therefore, we have no window into the quality of care they are receiving.  We have frail family members who do not understand what is going on and why we are not there. If that family member ends up in the hospital, we have no idea if we will ever see them again. This puts immeasurable stress on family caregivers.

A few short months ago, we were reminding family caregivers about the importance of taking care of themselves and using respite care to take a mental break from their caregiving responsibilities. Those days are gone. There is no respite. We often care for the most vulnerable in our communities, who could easily succumb to this insidious threat, thus we are terrified to let anyone into our homes -- knowing they could be asymptomatic carriers of the virus.

“As the parent of a child with a complex medical condition, COVID-19 has changed the way we manage complex care at home. At 10:15 p.m., I open the door to a masked nurse holding up a thermometer to show me that she does not have an elevated temperature. This procedure does not feel adequate; I know carriers can be asymptomatic. But this is all I have, the only tool I can use to feel safer. The support of in-home care at night allows us to sleep and work, and we are grateful for it, but we are terrified of the prospect of inviting the virus in by way of the caregivers we need.” – Nikki Montgomery, Caregiver 

Many of us lost the full- or part-time jobs that kept us afloat. Suddenly, we face food and housing insecurity on top of our caregiving challenges. Even if we retained our jobs, we no longer have the caregiving support we relied on that enabled us to work in the first place.

We cling to hope that Washington will not forget us in the relief efforts. Democratic Reps. Joaquin Castro (Texas) and Deb Haaland (N.M.) led more than 30 of their colleagues in asking House leadership to broaden the definition of essential workers in the next relief package. “The frontlines of this crisis start at home and will remain there as we fight this pandemic for the long haul,” Castro said in a statement. “The gross inequality of our health care and childcare systems is starker than ever, and that includes a complete lack of support for our nation’s caregivers.”

The pandemic has cast a bright light on the shortcomings of our healthcare system and its unrelenting reliance on family members to provide the bulk of care for our chronically ill loved ones, even when it has become one of the most dangerous jobs in America. More than 40% of the total population of this country is living with a chronic disease. [1] We have an estimated 43.5 million caregivers in the United States supporting them.[2]

“It’s an extremely confusing time because we don’t have real national coordination. A caregiver may live in a different state or city from their loved one… that has different rules about what you can/cannot do for them. And it is very hard to get information to make good, timely decisions. If you have a parent in senior living or other settings, while there are best practice guidelines about communicating with families, there are not many actual laws. So, when we were trying to decide if we should move my mom, it became clear there wasn’t going to be any way to know if someone in her building started to have symptoms or even if a COVID case was diagnosed.” – Geri Lynn Baumblatt, Caregiver 

One thing that has become crystal clear: we need a national health (and pandemic) infrastructure that is designed with family caregivers at the forefront. I am hopeful that the RAISE Family Caregiver’s Act will help get us there. In the meantime, let’s not forget the unsung heroes, the family caregivers, who continue to battle on under extraordinary circumstances.


[1] Centers for Disease Control and Prevention. The Power of Prevention. (2009) Accessed at 

Tackling the burden of chronic diseases in the USA. Lancet 2009;373(9659):185. Accessed at

[2] National Alliance for Caregiving and AARP Public Policy Institute. (2015). Caregiving in the U.S. 2015 Report.


Written by members of The Beryl Institute's Global Patient and Family Advisory Board including Isabela Castro, Nikki Montgomery, Tony Serge, MaryAnne Sterling and Janepher Wabulyu. The Global Patient and Family Advisory Board complements the Institute’s boards by ensuring the voices of patients and families are a central consideration in the strategic direction and offerings of the Institute. The Board reviews the Institute’s areas of focus and current resources and offer suggestions on new opportunities, topics of interest, etc., ensuring the perspective of the patient is part of all Institute efforts. 


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Keeping the Magic in Children’s Hospitals in a Time of Isolation

Posted By Lauren Grant, Monday, June 1, 2020

No part of this has been easy.  Whether you’re on the front lines, at home, “essential” or otherwise, we’re all struggling in our own ways.  As adults, we have the luxury of being able to express how COVID-19 has impacted us- physically, mentally, and emotionally.  Children are living this, too.  Talk about a struggle that we never had: “Welcome to childhood-- it’s confusing, it takes years to learn to emote, and now let’s add a Pandemic.” And then there are children currently in hospitals.  Those not previously required to be in protective isolation are now isolated.  Some have been uprooted to make room for adult overflow.  Social programs have stopped.  Knowing the impact of emotional well-being on health, we want to help these kids cope during their hospital stay.  How do we rally to bring them the “magic” that we so desperately want to remain part of their childhood? 


Honestly, you might already be doing it. Here’s what we’ve seen:

1.   You are openly communicating.

In a chaotic, rapidly evolving environment, children may have difficulty comprehending a situation. They may not understand the importance of protective measures (handwashing, isolation) and may have difficulty describing symptoms and feelings.  St. Jude Children’s Hospital now offers a free coloring book to help children better understand COVID-19.  Many hospital workers are placing their pictures over their PPE for more human connections with patients.  Additionally, care providers are explaining the ever-changing situation openly, creatively, and kindly, which can dramatically improve a child’s experience.  

2.   You are embracing technology.

With current isolation procedures, many children have lost access to playrooms, shared toys and freedom to move around the floor.  Some hospitals such as Lucile Packard Children’s Hospital Stanford are using electronic greetings to provide that sense of connection.  J.J. Bouchard at C.S. Mott Children’s Hospital shared several inspiring ways his patient technology team is creating a positive patient experience.  Using YouTube, they are giving patients (and children at home missing their “hospital family”) that sense of connection.  Illustrating the increasingly important role of patient technology specialists (many sponsored by  Child’s Play Charity), another member of Bouchard’s team has been using his expertise to help optimize/implement telehealth operations. 


Phoenix Children’s Hospital also implemented telehealth at an amazingly rapid rate, transitioning to 6000 virtual visits in a single week.  Smart devices are also being used to help children stay connected to loved ones and engage, and Bouchard’s team has been diligently working to find appropriate gaming recommendations.  Children’s hospitals have begun to implement in-room digital scavenger hunts to help children self-entertain and get themselves moving within their room*.  Clearly, this has become the time to harness technology, and hospitals across the country are doing just that.

3.   You are being resourceful.

We’ve interviewed several experts at children’s hospitals, and the amount of creativity, resourcefulness, and determination to build a positive patient experience is truly awe-inspiring.  Donor support has been harnessed to bring in programming and resources.  Though many hospitals are in spending freezes, departments and healthcare providers are reaching out to foundations and grants outside of their institutions for help.  Children, caregivers, and providers are also championing this by communicating their concerns and needs, and they are sharing this information not only with one another, but with others at hospitals across the country.  In short, care teams are doing what they can to provide for their team and for their patients. 


To all working to bring “magic” into hospitals at this time, thank you.  This isn’t easy, but we must do what we can to support children during this difficult time.  After all, to care is human, right?



*Disclosure—Product of SpellBound


Tammy Barnes is a scientist with a passion for finding creative solutions to help people.  After pursuing her Ph.D. in physiology at Vanderbilt University and completing post-doctoral training in neurophysiology at the University of Michigan, she traded in her lab coat to work with SpellBound to provide a new level of patient experience and care to children’
s hospitals. 




Jenny Choi is a current medical student at the University of San Diego, California and Cancer Biology PhD student at the University of Michigan dedicated to pediatric healthcare. Her experiences growing up with a younger brother with autism/special needs and working in pediatric clinical trials motivated her to join SpellBound to lead their research efforts.

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