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The Beryl Institute invites members to submit posts on patient experience related topics. For guidelines and information on submitting a post for consideration, please contact us at


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It’s October, let me be your voice!

Posted By Cecilia Olsson, Friday, October 16, 2020

Dear Patient Experience Community,


I’m Cecilia. I’m 47 years old, married to Ghazel. We have two girls, Maya,17 and Nora, 15I was born in Swedish Lapland, above the polar circle, and moved to France when I was 16I have traveled a lot and have lived in three different countriesmy family and I are now settled in Aix-en-Provence, France. 


In January 2015, I was diagnosed with breast cancer. It felt like a high-speed train had hit a wallI was the high speed train.always say that I would do anything to turn back time to 2013 to change that. But now, I’m struck by a feeling that maybe I would NOT turn back time, despite what breast cancer cost me and the pain my family had to undergo. Why? Because I wouldn’t be the person I am today, doing something that mattersToday, I keep focused on what really matters at work and at home.


And, if I turned back time, I wouldn’t be hereblogging


Cecilia 2.0, my new mission and purposehas become so real, so profoundly positive. Of course, there are difficult moments; but I use those days to remind myself how lucky I am! 


With my team at work, we’re fully committed to helping save more lives from breast cancerOctober is Breast Cancer Awareness Month, reminding us of our common purposeWomen and providing the care they deserve.


It’s hard to transfer my thoughts in writing, but nonetheless I am living a great journey. I’m cancer free; but it will always be present in my life. It’s a great source of inspiration to help drivpatient experience to the next levelmaking a difference for womeand contributing to the confidence women need


I’m so proud of the battles I’ve won and the light I can bring to such a dark world for manyMy mission and purpose are stronger than ever before, and my story has become my strength.


I know today what ingredients are needed to improve patient experience within my company, for healthcare providersfor me, but most importantlyhow to empower women to fight.


My breast cancer journey embodied approximately 300 medical events – surgeries, chemotherapy, radiotherapy, check-ups, blood testshormonal injections and moreAs a result, wrote daily in my diarypenciled down all I felt, heard, saw and smelled. My diary is my goldmine. As a Patient Advocate, I work towards filling the gaps that prevent womefrom driving their own healthcare journeysAlso, I help them see some of the beautiful things that can come as a result of breast cancer, because they do exist.


Many women believe technology and treatments are what you need to fight cancer. But that’s not allWneed information and educationWe need tips and tricks from the start to help us stay strong for upcoming battles.


Hence, I’ll do anything to help improvthe care pathway for women. I believe that storytelling and peer-to-peer support reach womein different waysthey have a big impact and influence on the decision to skip a screening and in choosing the best care provider


That’s exactly where The Beryl Institute helped me fill the gaps to start building the best patient experience. The Beryl Institute is the global community of practice dedicated to improving the patient experience through collaboration and shared knowledge.


Today I’m truly thankful to see my stories being told, including on, a great place to share information and knowledge, made just for women. We have all the ingredients to rethink the entire patient pathway.


I’m committed. I hope you are too.





Cecilia Olsson is a global spokeswoman for Patient Experience & Advocacy for Women’s Health at GE Healthcare. Olsson is 47 years old, married with two daughters. With roots in Swedish Lapland, she moved to France when she was 16 and has since lived an enriched life of travel and working for large international companies. She joined GE Healthcare in 2011 and naturally fell into her role as spokeswoman for Patient Experience and Advocacy after her own breast cancer journey in 2015. Cecilia is sharing her story with The Beryl Institute during Breast Cancer Awareness Month, because she is committed to improving the healthcare pathway for women around the world.

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Who Decides How Much Risk is Too Much Risk?

Posted By John Schall, CEO, Caregiver Action Network, Friday, October 9, 2020

My mom is pretty amazing. Her breast cancer diagnosis didn’t stop her from doing anything. Her job. Taking care of my younger brother. Taking care of my grandfather. She had been taking one of those new gene therapies and she was really doing great – and then there was the pandemic. I freaked out and called her. I told her she had to stop visiting grandpa, stop going grocery shopping. Stop everything! She was immune compromised and at risk for getting the coronavirus.

At first, she listened. Sort of. She still went to the grocery store, wearing a mask, and when she came home she wiped everything off. She had a job where she could work from home, so that helped. And we had enough money to hire a helper for grandpa who came in two days a week.

But the pandemic went on and on. We had to cancel the helper for grandpa and mom had to go and help him with his meds and his grocery shopping and laundry. She was getting stressed out and run down so she started to order from restaurants, and then go to restaurants, and then she started seeing her friends – and she wouldn’t listen to me! She was taking so many risks. What can I do to get her to make better choices? Do I have to move back home?


How much risk is too much? How can a family caregiver weigh the necessity of caring for a loved one, caring for themselves, and still take all reasonable precautions to avoid COVID? Everyone has their own level of risk tolerance to consider – but a family caregiver has to develop a risk profile for the entire family.

Being a caregiver frequently leads to a sense of isolation and depression.[1] How can caregivers make balanced choices to care for themselves and their care recipient? Should safeguarding against the coronavirus be the primary concern for you and your loved one even if separation causes loss of emotional and mental well-being?

Caregiving affects the entire family. Each family should find a time to talk about their family risk profile. Caregiving can fundamentally change the family dynamic in inescapable ways. With so much of your attention focused on caring for your loved one’s condition, your responsibilities as a caregiver can change your relationship with your spouse, your other children, or other family members. When you add in the pressures of caring during the pandemic, these dynamics are complicated by each family member’s own risk perceptions.

Let’s face it – some family members are risk averse, and some aren’t. If your sister-in-law wants to visit your father in the middle of the pandemic, and she is coming from a hot spot where there is a lot of COVID, you may think she’s crazy! But she may think it’s her last opportunity to see Dad. Talk about it. Be honest with each other. Or if you think your mother is taking unnecessary risks having coffee with her friends, tell her. And tell her why.

A family meeting even if it’s a phone call or video conference – is a great place to start. Although family meetings can be hard, they are a good way to pull together and support you and your loved one. Don’t be afraid to ask for help with organizing the meetings.

It may be too much to hope that everyone will be happy or that all the issues will be resolved in one sitting. Remind family members you may need to find some middle ground. At the end of the meeting, set up a time and a place for the next family meeting. And maybe you can all develop a risk profile for the family that everyone is comfortable with.


[1] MetLife Study of Working Caregivers and Employer Health Costs; National Alliance for Caregiving and MetLife Mature Market Institute. February 2010

About CAN

Caregiver Action Network is the nation’s leading family caregiver organization working to improve the quality of life for more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN serves a broad spectrum of family caregivers ranging from the parents of children with significant health needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. CAN reaches caregivers on multiple platforms. CAN (the National Family Caregivers Association) is a 501(c)(3) non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.

John Schall has served as the Chief Executive Officer of Caregiver Action Network (CAN) for the past eight years. Recognized nationally as a thought leader on caregiving issues and trends, John effectively links private sector goals with health care public policy.

John leverages his 30+ years of expertise in a wide range of policy fields, including healthcare, labor, education, economic development, taxation, and budget policy, to develop programs and strategies to solve the nation’s looming caregiver crisis. He has established CAN as a major voice in caregiving advocacy, with activity and position statements to policymakers on numerous issues.

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Supporting Volunteers in our New Normal

Posted By Eileen Pelletier, CAVS, Friday, October 2, 2020

“One reason people resist change is because they focus on what they have to give up instead of what they have to gain.”  Rick Godwin

The COVID-19 pandemic has changed hospital volunteerism and volunteer management as we know it. Our clinical colleagues have been forced to adapt and change, and so have we.

It seemed incredible to us that hospitals could just shut down volunteer activity and still function. We entered the realm of the unknown and made the best decisions we could. Due to those decisions, many of us in volunteer management have been redeployed, assigned responsibility for other efforts and even been furloughed. It has certainly been a time of new challenges for all of us.

This is not a situation any of us wanted to be in, but it is a situation we can all look at as an opportunity. Volunteer management is a profession that demands many different skills. This is the time to show your competence in many areas: matching the right people to the right role, like scheduling or customer service. Excelling in your new role can only prove your necessity to your organization. Be creative. Be a leader. If you don’t have one yet, this may even get you a “seat at the table.”

While you are showcasing your own value, do not forget to do the same for your volunteers. Keep in touch with them through calls, cards and newsletters. Encourage them to remain involved in any way they are comfortable. Perhaps you have invited your volunteers back and they can return to their original or a different role. They may also be able to change, as you did, to a new or virtual role. These may include virtual PFAC meetings, calls to patients or tutoring employees’ children. Others may want to do more in their community, such  as making masks or collecting distraction items for patients. 

Some of these tasks may also be done in a way that can support the hospital in the “new normal” even after volunteers are back in person. The modifications we are currently making to the patient experience volunteer role at my hospital include volunteers making calls to patients to reduce the number of individuals entering their rooms. This change could continue to operate and be of value in the future to all our patients in isolation, which would provide tremendous support to our Patient Experience team. My advice is to think long-term improvement, not just immediate necessary modifications.

Be sure to keep your volunteers in the spotlight. Write articles for your newsletter. Post items on your facility’s Facebook feed. Volunteers continue to do incredible work in new ways and have dealt with the change in their roles in the same way we have – with an attitude of how they can be of more assistance and gain new skills and interactions.

Most of us have concerns about the future of our profession and volunteerism in healthcare. I encourage everyone to focus not on the loss of our previous norm but to look at this time as an opportunity to gain relevance and value.


Eileen Pelletier is the Director of Volunteer Services at Hartford Hospital, Hartford, CT. Her responsibilities include program oversight for multiple campuses and satellites, program development, recruitment, retention and recognition of volunteers and the staff they support. Pelletier started off her career in cytotechnology, but after a few years of looking in a microscope all day, she realized she needed more interaction with people.  Having earned an M.S. in healthcare administration, she landed in  Volunteer Services and knew right away it was the right place for her.  With 24 years at Hartford Hospital, Pelletier still loves the uniqueness of her role. 

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COVID-19 is reshaping consumer healthcare behaviors: 3 trends for providers prioritizing PX

Posted By Brett Brende, Friday, October 2, 2020

Increased health concerns surrounding COVID-19 have altered consumer behavior across the board and every industry has felt the impact—including healthcare. With so much uncertainty still at play, patients are more hesitant to seek care as they redefine what “essential” and “non-essential” services mean to them.

To understand how these expectations have changed amid the pandemic and what providers can do to reestablish patient trust, we turned to SMG’s customized market intelligence tool BrandGeek® and collected feedback from more than 5,200 respondents. Through this proprietary research, we’ve identified three trends impacting the healthcare industry and how providers can adjust.

1.  1 in 3 respondents are less likely to seek routine care

While most people understand how important preventative care is to their overall health, many are opting to skip those visits this year. When asked if they would see a provider for a routine service, 37% said they were less likely to see a provider for a routine service now vs. before the pandemic.

Much of this stems from fear of exposure. More than half of respondents (52%) said they were concerned about catching the coronavirus during a healthcare visit.

To ease those concerns and encourage continued preventive care, providers need to adjust day-to-day operations and clearly communicate new protocols to patients. The next trend demonstrates where providers should prioritize those efforts and ways to make the greatest impact.


2. Providers must elevate safety measures + communicate their efforts

A complete overhaul of operational procedures can seem overwhelming, but the good news is small changes can make a big difference. We asked respondents to select which actions would make them feel more comfortable visiting their healthcare providers. Here are the top responses:

In addition to these efforts, providers have a responsibility to keep their patients informed—not just on operational protocols but on all updates regarding the pandemic. Unfortunately, we discovered most people are not getting this from their provider or healthcare system.

When asked how they stay updated on health information surrounding COVID-19, most respondents said they self-inform using local news (55%), national news (42%), social media (41%), and their own internet research (33%). Primary care doctor and hospital/healthcare system were among the lowest sources on the list (9%). This points to a real opportunity for providers to gain the trust of patients by being a source of knowledgeable (and accurate) information in such an uncertain time.


3. While telehealth awareness is high, usage is less than 50%

Even with extra measures in place to protect their health and safety, some patients are still not comfortable with in-person visits. Organizations with a viable telehealth option are able to provide these patients with an alternative to skipping the visit all together.

But telehealth remains an untapped opportunity for much of the industry. Our research shows that while 88% of respondents are aware of telehealth options and 75% say they would consider using the service, only 46% have used telehealth in the last year.

Again, the problem lies in a lack of communication. Only 54% of respondents feel their provider has given them enough information about telehealth services. And 3 out of the top 4 barriers to using telehealth involve a lack of education—with patients worried about quality of care, security breaches, or receiving an improper diagnosis. The onus is on providers to ensure their patients understand that telehealth services can be an effective and safe option.

Healthcare organizations have an obligation to stay ahead of patient concerns and make the necessary adjustments to establish and maintain their trust. For more on how to navigate evolving patient and employee expectations and drive loyalty, download our interactive Experience Management Playbook for healthcare.  


As VP of Customer Engagement – Healthcare, Brett Brende collaborates with internal patient experience (PX) management and product development teams to grow SMG’s healthcare portfolio. He takes a client-centric approach to his work, with a focus on providing the best possible program to potential clients to help them elevate the patient experience and meet patient needs.  

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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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