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

 

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Patient Experience: A Relational Achievement

Posted By Kenneth J. Gergen, Friday, June 24, 2016

We often think of experience as a private mirror. That is, there are events in the world, and they are reflected in our private experience. A patient may thus experience individuals in a healthcare system as nurturing and helpful as opposed to cold and indifferent. This view is shortsighted in two related ways. First, we are not passive recipients of others actions toward us; we are active agents in the world – even as patients – and these activities affect how we experience others. The quality of experience depends on what we are seeking, and what role we are playing. For example, the experience of pain you might experience at a sharp blow to your head is not the same as that of a boxer in the ring. Likewise, the pain of a needle being stuck in your arm is quite different for a patient who fears pain and is trying to avoid it, than one who eagerly seeks a blood test. The way we participate in health systems will vitally color what and how we experience.

AS WE PARTICIPATE, SO DO WE EXPERIENCE

This brings us to the second flaw in the common assumption that experience is like a mirror. It is not simply that the way we participate colors our experience. But this participation does not take place in a vacuum. The quality of experience depends on the relationships in which we are participating. Consider again the pain of the boxer. He is not boxing alone, but participating in a traditional form of relationship. In the same way, when we approach health systems with fear and defensiveness, we are also participating in a particular social tradition. Similarly, the way one experiences the probing hands of a doctor – a formalized relationship - is far different than the same touches occurring in the hands of a partner’s embrace. In effect, we may say that experience vitally depends on our participation in relationships.

TOWARD RELATIONAL HEALTHCARE

In this light, the concern with patient experience shifts focus from the individual to the relationships of which the individual is a part. In effect, our sites turn to relational practices, and especially those practices that enhance the patient’s experience. Some of these practices are clear enough. We all know the positive impact of family relations that can lift the spirits and give meaning to the future. New innovations are also emerging on the scene. Programs in which patients are drawn into the treatment team – collaborating with physicians and nurses in their own care – are blossoming. Programs that increase the empathy of doctors for their patients, and patients for their doctors, are growing in numbers. Practices in which patients contribute to the education of physicians are inspiring. In all cases, there is an increasing sense that the best in healthcare grows from an awareness that "we are all in this together.”

A CONFERENCE ON RELATIONAL PRACTICES IN HEALTHCARE

For anyone wishing to know more, to explore the many potentials of a relational approach to healthcare, I would also like to recommend an upcoming conference Relational Practices in Health and Healthcare: Healing through Collaboration. It promises to be a lively, informative, and significant event.

This international conference will be held in Cleveland, Ohio at the new Global Center for Health Innovation, November 10-12, 2016. The conference is offered by the Taos Institute in collaboration with the International Institute for Qualitative Methodology, Alberta, Canada. The significance of relational practices will be underscored by a plenary offering from Jason Wolf, President of The Beryl Institute, and passionate champion of positive patient experience.

Kenneth Gergen is a Senior Research Professor at Swarthmore College and the President of the Taos Institute. He is internationally known for his writings on social construction and relational process, and their many applications to professional practice.

Tags:  collaboration  participation  partnership  patient  quality of care  relational healthcare  relationship 

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Patient Experience Through Different Lenses

Posted By Katie Litterer , Friday, May 27, 2016

I am the proud mom of identical twin girls, Sophie and Maddie, who were born unexpectedly and prematurely in 2008.The years since their arrival have been tumultuous, triumphant and everything in between. For more about our story, please check out this recent article on Boston Children's Hospital's Thriving Blog.

To say that my husband,Paul, and I weren't ready to advocate for our children upon their arrival is an understatement. Fueled by adrenaline and fear I didn't know what questions to ask, I often struggled to understand what the medical team was communicating to us and I had no faith in myself when nurses would say, "You're the mom, you know your children best."

I stopped working to care and advocate for my daughters and, over the years, have become a mom I know they can count on. I have also turned my advocacy for them into a new career. I started this journey by serving on the Boston Children's Hospital Neonatal Intensive Care Unit Family Advisory Council from 2009-2011. Since 2012 I have served as a member of the hospi­tal-wide Family Advisory Council alongside 16 other parents. And,in January 2016, I joined the staff in our Hale Family Center for Families as a Family Partnerships Coordinator. In this role, I strive to weave the voice of patients and families into the fabric of decision making at Boston Children's. It's a role I cherish and feel honored to serve in.

These have become my "truths":

AS A PARENT:
Patient experiences are as much about Paul and me as they are about Sophie and Maddie. A great patient experience, for us, is defined both by medical outcomes and by Paul and me tak­ing part in finding solutions. Within this experience process, I advocate until I am satisfied that I've done my best for my children, and I expect our care team to understand and respect that.

AS A FAMILY ADVISOR:
Working alongside other volunteer family advisors has taught me and that every family has their own patient experience stories, perspectives and priorities. While my natural tendency is to ad­vocate for what I believe would suit my own family best, I remind myself that it's important to col­laborate with-and respect the perspectives of-other advisors to achieve our larger group goals.

AS A FAMILY PARTNERSHIPS COORDINATOR:
I recognize that experiences are determined both at and beyond the bedside; that improving patient experience within an organization is a fluid team effort; that there is no singular equation that guarantees a positive outcome every time. At a recent Patient Experience Summit, Juliette Schlucter, Director of Child and Patient Experience at NYU Langone Medical Center, shared a view that deeply resonates with me. It is that if you want to affect great change, you must be willing to listen to the other voices in the room. She was talking about collaboration.

As a parent, a volunteer family advisor and now, as a hospital employee, I have gained different perspectives on what patient experience means and how a great patient experience can be achieved.

 

Katie Litterer spent 10 years working in the financial services industry before becoming a mother to identical twin girls, Madeline and Sophie, born at 27 weeks gestation. With care experiences at 5 hospitals in two states, Katie began volunteering her voice as a family advisor in 2009. Katie now juggles her role as a Family Partnerships Coordinator at Boston Children's Hospital with her most important job, caring and advocating for her sweet girls. Katie is also an active member of her daughters' school community in addition to serving as trustee for a charitable private foundation that supports archaeological research of native peoples in the Americas.

Tags:  collaboration  journey  patient and family advisor  patient and family advisory council  pediatric  story 

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Rare Care – The Specialty Pharmacy Patient Experience

Posted By Christopher W. Kennedy, MSM, Tuesday, October 13, 2015

Nearly 7,000 diseases are classified as rare in the United States. These disease states require some of the most cutting-edge and technologically advanced therapeutics. Patients with chronic rare diseases will often require long-term medications throughout their lives. The management of a rare disease requires a multidisciplinary approach to healthcare. Continuity of care is front and center as patients are transitioned from inpatient hospital settings or outpatient clinics to their homes. Many will require frequent treatments, nursing visits, on-going monitoring, medication adherence plans and disease state education.

The Patient Experience drastically changes for patients after they are discharged from traditional care settings. Advancements in the Patient Experience movement within inpatient hospital settings has set an example for specialty and home infusion pharmacies to follow. While some hospitals have found it difficult to determine where their inpatient pharmacies fit into the Patient Experience movement, other leading health systems have fully recognized pharmacy as the medium that crosses all levels of the healthcare continuum.

Regardless of the progress being made in the hospital setting, the Patient Experience has stalled on the doorstep of the specialty and infusion pharmacy industry. This challenge requires organizations to redesign their "customer service” models. Heritage Biologics is a specialty pharmacy providing nationwide infusion and rare therapeutic services. The pharmacy was founded by a rare disease patient who asked a really BIG question: How do we improve care for people like me?

We have established Four Fundamentals that guide the organization’s framework for creating a successful Patient Experience platform:

  • PARTNERSHIP: Customized solutions are designed to ensure the continuity of care between providers and all healthcare stakeholders.
  • COLLABORATION: Insights are captured and shared with healthcare partners to allow for better outcomes management.
  • EXPERIENCE: A new standard in pharmacy patient care is being established with our patient-centered solutions.
  • GUARANTEE: A clearly defined emphasis on placing the patient before the business allows for a commitment to rare care that is unmatched.

The complexities of the evolving healthcare system in the U.S. have posed significant challenges for rare disease patients. Pharmacies must team with healthcare providers, payers and manufacturers to coordinate care efforts. This creates an environment where therapeutic health outcomes become the common denominator for everyone involved. Collaboration is critical for patient healthcare, and we hope other pharmacies will join the Patient Experience movement.

 

Christopher Kennedy is Vice President of Business Development at Heritage Biologics. He has spent the last 14 years as an executive leader and innovator in the healthcare space. His background includes launching several entrepreneurial start-up ventures designed to help advance patient care.

Tags:  collaboration  environment  healthcare  patient experience  pharmacy 

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