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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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Top tags: patient experience  healthcare  communication  culture  patient  HCAHPS  Leadership  patient engagement  empathy  physician  survey  compassion  perception  physicians  technology  caregiver  community  data  employee engagement  family engagement  healing  Hospital  improving patient experience  collaboration  Consumerism  Expectations  interactions  patient and family engagement  pediatric  person-centered care 

Navigating the Path Ahead: A Roadmap for Patient and Family Engagement

Posted By Ushma A. Patel, MSPH, Thursday, November 12, 2015

To patients. For patients. With patients. This is how the healthcare system has evolved in how we interact with and engage patients and families in their care. As a healthcare researcher, I was always drawn to the patient and family engagement field. However it wasn’t until recently that my passion for improving the healthcare system deepened. In 2014, I survived preeclampsia, HELLP syndrome and a subarachnoid brain hemorrhage after my daughter’s birth. Luckily I am doing just fine now, but my daughter went on to face multiple health challenges, including open heart surgery at 7 months, eye surgery at 15 months and a suspected genetic condition that will have lifelong implications. As a mom and patient advocate, I know firsthand how important it is to stay engaged with her providers and healthcare – not just for improving her health but also for other children who may face similar battles.

There are many perspectives of what patient and family engagement is, and despite the variations, I think we can all agree that it is critical. The more important question is exactly how we engage patients and families in meaningful ways.

Based on Carman et. al’s Framework for Patient and Family Engagement, the American Institutes for Research developed the Roadmap for Patient and Family Engagement in Healthcare Practice and Research with funding from the Gordon and Betty Moore Foundation. The Roadmap reflects collective input from over 70 stakeholders who represented a variety of perspectives - clinicians, healthcare leaders, patients, families, insurers, payers, and researchers. It includes a vision for patient and family engagement in healthcare, and 8 change strategies to drive action towards increased patient and family engagement: 

  1. Patient and Family Preparation. Educate, prepare and empower patients and families to engage effectively in their health and healthcare 
  2. Clinician and Leadership Preparation. Educate, prepare and empower clinicians and healthcare leaders to partner effectively with patients and families
  3. Care and System Redesign. Redesign care to support partnerships between patients, families, and the healthcare team
  4. Organizational Partnership. Redesign healthcare organizations to make patients and families part of the governance structure
  5. Measurement and Research. Create measures and conduct research to improve care, facilitate changes, and understand outcomes
  6. Transparency and Accountability. Make data and information transparent to promote accountability and enable action
  7. Legislation and Regulation. Encourage patient and family engagement through regulation and legislation
  8. Partnership in Public Policy. Identify and provide opportunities to integrate patient and family perspectives into public policy

These change strategies occur across the 3 levels of engagement – (1) direct care, (2) organizational design and governance, and (3) policy. Within each of these 3 levels, there are opportunities for engagement across a continuum, ranging from consultation to partnership and shared leadership. At the consultation end of the continuum, patients are involved but have limited power and decision-making authority. At the partnership and shared leadership end of the continuum, patients have shared power and responsibility and are active partners in defining agendas, co-creating materials, contributing information, and making decisions. And it’s at this end of the continuum where there’s an opportunity for real change to occur.

Adopting these change strategies can take time, and therefore, the Roadmap also includes 5 simple actions that different stakeholder groups can take immediately such as preparing for their healthcare appointment or inviting patients and family members to share their experience.

There may not be a clear path to how we improve population health and the patient experience or reduce health care costs, but the Roadmap provides a solid starting point to navigate the way. Click here to read more about the Roadmap and Framework.


Since 2009, Ushma Patel has worked as a health services researcher at the American Institutes for Research in their Chapel Hill, NC office. Prior to AIR, she worked for the Lewin Group. In her spare time, Ushma is an avid DIY crafter, and also volunteers as a member of the Patient Advisory Council for the Preeclampsia Foundation and for the Duke Pediatric Cardiac Surgery Center.

Tags:  family  measurement  patient  research 

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A Caregiver's Guilt

Posted By Sara Shearkhani, Tuesday, June 24, 2014
Updated: Monday, June 23, 2014

Have you ever felt that breathing is hard and painful? Have you ever felt that you need to run away and leave everything behind? Have you ever, ever, lost your dreams? Well, cancer makes you feel all the above.

Do not get me wrong; I am not the cancer patient. I am the caregiver. I am the one who everybody asks, with a sad voice: How is your husband, the cancer patient, doing? And they never ask, how I'm doing. And that's why I had so much trouble writing this piece. It seems nobody believes that it's my story too; even me! The feeling of guilt is unbearable. Is this my story to write? Do I have any right to write about my husband's story? Do I, as a caregiver, have any story to tell? If I do, why do I feel so guilty writing about myself, my pain, my story? Why do I feel guilty?

When he was diagnosed with cancer, we were told that it was his story; it made sense to me – for a while. But, eventually, I realized something was wrong with this picture. And with that realization came solitary, lonely, and crushing guilt. You continually question your actions and attitudes: Am I being selfish? Am I a bad wife and an awful caregiver? Am I betraying him by being selfish? Does it mean I will leave him?

In any case, the problem became clear when I had to deal with his seizures. The doctors, pretending I wasn't there, asked my husband what his seizures usually look like! Okay! I stared at the doctors, so they would feel uncomfortable and notice me. How on earth would he know what his seizures look like? I am the one who gets to watch him during the seizures. Yet, I did not dare speak. After all, it was his story!

Or, probably, the feeling of guilt came when I was administering all aspects of my husband's care since he was in denial and shock and wouldn't do anything at all. It was a great deal of responsibility; you have to be really careful about the decisions you make for the patient: They might be wrong; you will be blamed for it. At best, you need to explain yourself all the time. Like the one time that I took my husband to ER for a seizure that according to his oncologist was a focal – or limited – seizure; the doctor wrote to us that such behavior – taking my husband to ER – only served to intensify our anxiety; we needed, he said, to "move on!”. Let me explain something for you; we were on a trip and during the seizure my husband bit his tongue and blood was all over the place. I did it again; I'm having to explain myself, again!

I felt guilty when I experienced all the side effects of the chemo on his first day of chemo! The poor thing ended up taking care of me. Ah, such an awful caregiver I am! I also felt guilty when I made good friends through support groups and I got to transform my life with their help. After all, it's his....story…

I guess the point I'm trying to make is I, as a caregiver, have had a tough time dealing with the situation. My fight started the very moment his fight began. And everybody, from myself, to you, dear reader, needs to understand that it is OUR story. So, next time you talk to a caregiver, do me a favor, and ask her or him: "How are you doing?”

Sara was a Ph.D student in economics but had to take a break to help her husband with his treatment for brain cancer. She is now a patient and caregiver advocate and has changed her field of study to health policy.

Tags:  caregiver  family  guilt  patient advocate  patient experience 

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Patients vs. Customers: Communicating with All Your Audiences to Maximize the Patient Experience

Posted By Elizabeth Ziemba, Tuesday, November 12, 2013
Updated: Monday, November 11, 2013

Providing a comprehensive and superior quality patient experience requires identifying and communicating with all of your audiences. Technology, a changing and competitive healthcare environment, increasingly sophisticated consumers and other factors have muddied the discussions leading to confusion about "patients,” "customers” and "clients.” Often these terms are used interchangeably. Clear communication requires an understanding of all of your audiences and using language that is tailored to their individual needs. Here is a suggested framework to sweep away the clutter.

The word "customer” refers collectively to all members of all your audience. It is the broadest term with the widest reach across all your communication channels. "Customers” include patients; the family and friends of your patients; staff, co-workers and colleagues; external services and lost leads.

Patients are the easiest group to define. They are the individuals who receive health and wellness services and to whom you owe specific legal duties and obligations governed by the laws of where the services are provided. They are at the heart of your organization and the reason it exists.

An extremely influential group of people is family members or friends who know the patient and are engaged in the decision making process. They may accompany the patients to the place of service and observe the entire patient experience process. The patient experience also refers to how family members and friends are treated and how they observe patients being treated. Have you ever had the situation where a patient became upset because a family member or friend was treated rudely?

Your customers are also staff such as your co-workers and colleagues. "Co-workers” are the people within your organization with whom you work either directly or indirectly. Your co-workers are the people in other departments who impact the patient experience. Strong, positive relationships are essential with other internal departments including patient services; public relations; translation and interpretation; finance and billing; marketing and the legal department. Excellent customer service requires that you work together as a team serving all of your audiences.

"Colleagues” are other professionals and associates within your field. You may know them personally or have indirect contact with them through associations or social media like LinkedIn. They contribute to the quality of the patient experience offered by your organization by what they say, write or post about you or your organization. They are often a source of referrals who influence where people receive medical services.

Rude behavior seems to have become a favorite national pastime that has a huge negative impact on the patient experience. Here are the results of a 2012 poll administered by, a US nationwide job search site. About 71% of all US co-workers including healthcare workers were rated to be "somewhat” to "downright rude.” How would you rate your co-workers? How would your customers rate the members of your organization?

How co-workers treat each other impacts the patient experience. There is an excellent book called The Cost of Bad Behavior that examines the effect of rude and offensive behavior by co-workers on patients and other by-standers. The research may surprise you. Simply witnessing (as opposed to being the object of) bad behavior has a negative impact that lasts a long time.

The next audience to consider is your "external services.” These individuals and organizations are the links in the chain that bring the patient and his or her family and friends to you and return them home safely. What are some of the external links in the your customer service chain interacting with your customers? They may include hotels, transportation services and restaurants recommended by your organization.

While you may have less control over how these services are delivered to your customers, there are ways to manage these relationships. Remember that negative experiences resulting from interactions with external service providers will influence the patient and customer experience.

The final category to consider is "lost leads.” Lost leads are individuals who contact your organization but take their business elsewhere.

Lost leads may result from a variety of reasons: Telephones that are not answered or not answered properly; calls that are disconnected; callers put on hold for too long; calls that are transferred to the wrong department; telephone messages that are not returned promptly or not returned at all; emails that bounce; emails that are not answered at all; web site links that don’t work; incorrect telephone numbers listed to call and more. All of these frustrating experiences are reasons for people to take their business elsewhere, complain about your organization and post negative remarks on social media sites. Work with your marketing department to contact these people and find out what type of customer experience they had. Their stories are a fantastic source of information about where your organization is failing to deliver customer service and why people are taking their business elsewhere.

Delivering a high quality patient and customer experience requires sophisticated communication with all of your audiences. While the focus of healthcare providers must be superior clinical care, ignoring any of your audiences risks poor patient and customer experiences.

Elizabeth Ziemba is the President of Medical Tourism Training. Ms. Ziemba has worked as a consultant to various medical tourism businesses, nonprofit organizations and governmental agencies, focusing on developing and implementing marketing and market research as well as customer-service solutions. As a skilled writer, she has published extensively on various business topics including medical tourism and uses her writing abilities to oversee course content development for the company. Her focus on practical solutions based on years of business experience provide tangible benefits to the company's clients.

Tags:  behavior  customer  family  patient experience  quality  staff 

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