Patient and Family Voices Will Resound at 2016 Planetree International Conference on Patient-Centered Care

Patient and Family Voices Will Resound at 2016 Planetree International Conference on Patient-Centered Care

“Ideas can come from anyone and anywhere and can be inspired by any kind of life experience.”  So says President Barack Obama in this clip as he introduces Ramona Pierson, a tech entrepreneur he has hailed as an example of innovation and entrepreneurship.  The life experiences that have inspired Pierson to create a social network dedicated to promoting lifelong learning and connecting knowledge seekers around the world can be traced to her experience as a patient.  She will share how one led to the other as a keynote speaker at the 2016 Planetree International Conference on Patient-Centered Care. 

Ramona Pierson

Pierson will be just one of many patients and family members sharing their stories, their insights and their solutions for creating a more patient-centered healthcare system.

The event will take place in Chicago, Illinois from October 30 through November 2.  In addition to Pierson, patient and caregiver keynote speakers include Alex Sheen, who channeled his grief and memories of his late father into the “because I said I would” social movement and non-profit, and Nancy Frates, whose advocacy for patients with ALS – including her own son – includes creating the ice bucket challenge. Continue reading “Patient and Family Voices Will Resound at 2016 Planetree International Conference on Patient-Centered Care”

When the Healthcare Professional Becomes the Patient

When the Healthcare Professional Becomes the Patient
By Ingrid van der Voort

Please let me introduce myself. My name is Ingrid van der Voort and I live in Almere, a town close to Amsterdam. I work as a quality and complementary care consultant at Flevo Hospital in Almere, the first Planetree Designated hospital in The Netherlands. Some years ago, I got to know my own hospital from a different perspective: the patient perspective. I suffered from breast cancer. And through this experience, I tried to make my own encounters with the hospital—and those of hundreds of other breast cancer patients—a little better.

Every woman who visits a hospital for the examination or treatment of breast cancer has to bare her upper body and often wait for a long time before seeing the doctor. My personal experience has taught me how vulnerable you feel while waiting half naked and later when sitting in front of the doctor.

embrace doek roodWith my colleague Marleen Richards, who is a nurse at Flevo Hospital, we wanted to do something to improve this situation. We came up with the idea of a scarf, which we called the Embrace Scarf. It is made of very soft fabric. You can put it on in one movement and it stays on the patient’s shoulders. My daughter Nathalie was the designer.

The use of the Embrace scarf gave me a sense of dignity during the follow-up after the treatment. I felt more secure and the waiting was more comfortable. I wanted to share this feeling with other patients and thus, after a short time, the Embrace Scarf was made available to others. At first the patients had to buy it themselves, but nowadays the Flevo Hospital offers it to them. Continue reading “When the Healthcare Professional Becomes the Patient”

Trial by Fire: Reflections of a Care Partner

Trial by Fire: Reflections of a Care Partner
By Tory Zellick

Tory Z image 1I loved my mom, but she was never my friend.

We never got a chance to make it that far. She was my mother. She nurtured. She cared. She disciplined. She packed my school lunches. She tucked me into bed at night. She was an authority figure that I respected, but she was never one of the girls. Just when I was transitioning into adulthood, our roles reversed. I became the mother, and she became the one I nurtured, cared for, disciplined, and tucked into bed at night. I became her primary care partner.

Our relationship consisted of life and death. We skipped all of the stuff in between that forges bonds of friendships between mothers and daughters. But as I reflect, perhaps our mother and daughter relationship was as profound as a relationship can be: my mother was there when I was born, and I was there when she died.

My Story

Our story began October of 2002.

Tory-Z-image-2-webI was a freshman at Chico State. After a long day of classes, I arrived home assuming it would be just another day. Mom would ask about my day. I’d tell her. The house would be in perfect order, just like my life: everything safe and sound and put back on the shelf and tucked away where it belongs.

Only that day wasn’t like every other day.

It was like no other day. Yet it would be the day that marked both the end and the beginning—a day that had my family living somewhere in between for the next six and a half years.

“The biopsy of the lump came back today,” she said. “It’s malignant. I have breast cancer.”

Instantly I was numb. It felt like a soft ball was lodged in my throat. My immediate reaction was to cry only I couldn’t cry because that wouldn’t be the right reaction. If I started crying, Mom would feel even worse.

How horrible it must be for a mom to tell her child that she has cancer. Continue reading “Trial by Fire: Reflections of a Care Partner”

Planetree Polls Explore What Matters Most to Patients

Planetree Polls Explore What Matters Most to Patients

The results of a series of Patient-Centered Care Awareness Month polls exploring patients’ preferences for healthcare underscores that a patient-centered approach to care must be individualized.  Making assumptions or generalizing about patients’ preferences – even when done with the best of intentions to provide a patient-centered care experience – can undermine those very efforts.  That’s why integrating systems for inquiring about and documenting patient preferences is a critical element of patient-centered care delivery.  Doing so standardizes processes for collecting and using this information to truly personalize care based on what we learn about each individual with whom we interact.

What did we learn from the informal polls conducted during Patient-Centered Care Awareness Month? Continue reading “Planetree Polls Explore What Matters Most to Patients”

Two Sides of a Coin

Two Sides of a Coin: Being a Patient’s Family & Being the Provider
By Ilkay Baylam, Patient Relative & Manager, Patient-Centered Care, Anadolu Medical Center, Turkey

It was a warm Los Angeles morning when I met with this couple over breakfast at the hotel where I was staying. Jane, an English teacher and Michael, a mechanical engineer, living in Austin were, like me, visiting LA.  We had a very nice conversation during breakfast, after which Jane told me that she wanted to pray for me and inquired if I had a wish for the prayer. “Sure,” I said. I told her about my presentation that would take place in a week in Boston at Planetree’s Conference. “I feel confident, however it is going to be on the 13th” I said. She promised me she would pray for my presentation. It was in hindsight after our special conversation that I realized how long it had been since somebody had offered to do something unconditional for me. On the one hand, it was heart breaking. On the other hand, it gave me hope. I am going to tell you about my presentation in this article which I think Jane’s prayer has a role in.


I was working as my hospital’s Manager for Patient Centered Care when I learned the happy news: my wife was pregnant! We were all excited about the news and the endeavor we were about to begin. However, as days passed by we figured out that some things were not normal. My wife had to go through some genetics tests because of abnormal values at the blood tests and ultrasound images. We ended up going to a perinatologist for detailed follow up of the pregnancy. Tests followed other complicated tests and an amniocentesis had to be done.

Each time we were leaving the physician’s office, we were receiving bad news from the perinatologist and I had to comfort my wife as I tried to pay the bill. I then recognized the lack of compassion from our patient clerks. They were so much focused on getting the provision from the private insurance company that they were missing the point: the place I needed to be at that time was with my wife, not at a hospital counter. Pregnancy is like a long term contract with a provider. Sooner or later the patient will come back and the patient clerk can collect the receivable afterwards.

At those times when we were absorbing the bad news delivered to us, we needed to find a private place for ourselves.  A place where my wife could cry and I could comfort her. However, in the absence of such a place, every scene occurred in front of everybody and I had to drive her out of the hospital immediately. Think about your elevators, about waiting areas. Do you not see patients and their relatives in sorrow in those public areas? Why not build shelters for those who need it and provide social support during this time?

Continue reading “Two Sides of a Coin”

Patient-Centered Research and Patient-Centered Care: Connecting the Dots

Patient-Centered Research and Patient-Centered Care: Connecting the Dots
By Sue Sheridan, MBA, MIM, DHL, Director of Patient Engagement, Patient-Centered Outcomes Research Institute (PCORI)

Sue SheridanAs we observe the 2015 Patient-Centered Care Awareness Month, I find myself reflecting on the dynamic interplay between patient-centered outcomes research and patient-centered care and the potential role that patients can play to improve both processes to lead to better patient outcomes.

  • PCOR engages patients as essential “partners in research” participating in the planning, the conduct and dissemination of research findings.  It has the potential to serve as the underlying foundation to patient-centered care, providing evidence from research that is based on preferences, values and outcomes that matter to patients.
  • Patient-centered care engages patients as “partners in care” and is (or should be) shaped by the evidence derived from PCOR to attain individual patient goals and preferences.

Patients are uniquely positioned to help knit these two reciprocal processes together. On one hand, patients’ “lived experience” (as recipients of care) equips them to  partner with researchers in developing patient-centered research questions, in measuring outcomes that are important to patients, and in reporting their results in useful, patient-friendly language. On the other hand, the insights gained by patients who have partnered in PCOR equip them to be effective “change agents” in the many processes that facilitate the adoption of PCOR results in practice – processes such as the development of guidelines, quality measures, accreditation standards and medical and patient education materials .

My personal experiences after the birth of my son, Cal, illustrate how this can work – how a group of mothers partnered with researchers to discover better approaches to care, and how they then partnered with several organizations to ensure that these research results led to improvements in neonatal care, development of patient-centered information – and to better outcomes for newborns and their families. Continue reading “Patient-Centered Research and Patient-Centered Care: Connecting the Dots”

What Being a Brave Patient Means to Me

What Being a Brave Patient Means to Me

Laila Hallam, Consumer Advocate Laila

Bravery is to continue to speak up for yourself when it’s easier to succumb and be “told.”

Bravery is to forgive when mistakes happen, and lessons are genuinely learned.

Bravery is to recognize the bright stars when otherwise poor patient experiences happen.

Bravery is when a patient chooses to speak up after a difficult experience, even when it will make no difference to their own outcome.  To speak up, when it’s easier to just let it go and not make a fuss, but do so in an effort to make it better for the next person.  Equally, the brave staff are those who, quietly and attentively, listen to patients who have their challenging story to tell – even when it’s hard to hear – and then genuinely commit to finding better ways.

Bravery is when staff decides to openly share difficult experiences with their peers – when it’s more tempting to keep them hidden and out of view.

Bravery is when the staff member does something special for a patient knowing it may create some inconvenience.

Bravery is when anyone (patient or staff member) challenges the entrenched status quo – for the better.

Bravery is the stamina to keep going, when those around you just don’t “get it.”

Pat Mastors, President, Co-Founder, The Patient Voice Institute 

pat-mastorsWhen our daughter was hospitalized with a rare and paralyzing nerve disorder, she’d see a bunch of different people every day, and it seemed the right hand didn’t know what the left hand was doing. We’d call attention to these disconnects — it wasn’t the “worker bees'” fault — but the lack of a clear and accountable plan had to be addressed. With the help of a wonderful nurse, we arranged a “come to Jesus” meeting with the physicians in charge. THAT’s where it was important to be “brave” with our questions and concerns– meaning honest, prepared, rational and respectful. It was very well-received, and we noticed an immediate change for the better.

Lisa Freeman, Executive Director, Connecticut Center for Patient Safety Lisa-Freeman

What is a brave patient? A patient who is able to question authority.  A patient interacting with the health care system who is able to say to their care provider, “I don’t understand what you are saying, can you say it differently?” or who asks their care provider, “what are all of my care choices and what will their expected outcomes be?”

And a brave patient asks all of their caregivers to please wash their hands.

A brave patient is one who walks through the world of health care and expects respect for their preferences as a patient, and more importantly as a person, from everyone with whom they interact.

A brave patient is one who enters treatment for a medical condition knowing that it will be tough and filled with challenges, and is able to put their confidence in their caregivers and themselves to get through it with grace and dignity.

Catherine W.

Being a brave patient means expressing your needs until those needs are met.  Being a brave family member means advocating for your loved one even in the face of resistance.  In the case of pain management for a loved one, it means going above a nurse’s refusal, speaking to a charge nurse and then insisting that the doctor be called. Being brave means taking what we have learned in a Planetree hospital and insisting on the same level of care in a non -Planetree hospital.  The level of push back can be very daunting.  Bravery gets us through the stress until (as an example), I am allowed to spend the night with my husband after surgery.

From Advisor to Partner

From Advisor to Partner
By Richard Hanke, Ed.D., SPHR, Planetree Board of Directors Member, Planetree International Patient and Family Partnership Member

“Let’s set up a focus group; no, an advisory group.  We need to do it so our constituents can give their opinions.”

Dick Hanke headshotHow often have we heard this type of planning in every type of organization?  As with many volunteers in healthcare work, I have served on advisory groups and participated in focus groups for some time.  It was always felt that thoughtful and considerate input was provided to the parent group in these settings.  And we received generous signs of appreciation.  We had done our duty and felt good about it.  So what was denied? We knew that the input was received but we had a total lack of knowledge that it was profitable or helpful in any way.

My experiences and background in leadership and organizational development has given me a somewhat different lens in viewing how organizations function and, more specifically, how volunteers can best function within a complex and ever-changing healthcare organization and contribute in a viable manner.

Understandably, focus groups generally meet one time to provide an opinion or feedback on a topic.  Advisory groups simply provide advice and suggestions and may or may not receive feedback.  These relationships have merit and are healthy as long as participants understand the limitations.  The relationship that provides mutuality in attaining a goal for the greater good really comes from the PARTNERSHIP.  Participants in the partnership strive cooperatively to integrate ideas in such a way that the actual result is something greater than any one person or viewpoint can achieve.  The commitment of everyone  – individuals, patients and family members, staff members, and leadership/administrative staff – allows for highly constructive “conversations” that bring about rich results.  The understanding and respect of everyone’s role provides support for that mutuality.

Is this possible in the healthcare setting? Continue reading “From Advisor to Partner”

How do you want to be remembered?

How do you want to be remembered? Grace Kennedy

The following is an excerpt from an interview with Grace Kennedy and her mother Pam Davis.  Grace was born with a rare genetic kidney disorder which required a kidney transplant at 13 years old as well as ongoing management.  As a result, for the past 27 years she and her mother have interacted continuously with the healthcare system.  In this interview, Grace and Pam reflect on these experiences, both the good and the bad, and impart valuable insights about the ways, both big and small, that healthcare professionals leave a lasting impression on patients and family members.

What do you think is important for healthcare professionals to know about what matters most to patients and family members?

Grace: What’s really important in the medical setting is that all patients, they remember you. Voice - pull quote They remember many times what you were wearing, what you looked like and what you smelled like, and whether you really cared that I was there.  I just wanted, as a patient, for my nurses to listen to what I needed in that moment in time.  One thing I noticed as a patient is that a lot of times I’d be in a room and the lights would be off, and the nurse would come in and do whatever they needed to do and not even introduce themselves.

Pam: One of the most profound moments that I remember after Grace was born was being in that swirl of not knowing.  I remember this nurse and the day she showed me the medications that Grace was going to have to take.  I seriously almost fainted.  I was so overwhelmed and thought, “However can I manage this?”  You just can’t even conceptualize what’s ahead of you. Pam Davis1.jpg I remember I could just tell the nurse didn’t understand at all what I was feeling and she couldn’t relate to me.  I know everyone is trying to be stoic and to not go to that place of empathy and compassion, visibly.  I just wanted her to meet me at a place where I was, feeling overwhelmed, and say, “How can we present this in a way that is easier for you or should we revisit this?”  I felt so alone.  It’s so easy to get caught up in the work, but just remember we all respond and feel differently and need to be met where we are.

How has your experience with healthcare compassion most influenced you personally?

Grace: I am now an ER Tech in a Level II Trauma Center and also an EMT on an ambulance.  I too was taught a rubric to be stoic and don’t ever say, “It’s going to be okay.” I have had to come to an understanding of breaking down that barrier but also protecting yourself at the same time.  I refer to it as a bedrail being between the patient and the staff.  All patients usually have a bedrail between them.  It’s a process of erasing that bedrail.  When I go into a room, I really try to go in, introduce myself, tell them exactly what I’m doing, why I’m there.  In the ER, I have to have that sense of urgency all the time.  But just taking one minute, sixty seconds, to make direct eye contact with that patient and express “I understand that you are scared.  I’m here to help you and you’re in a safe place.”  Establishing that foundation really helps gain the trust of your patient.

Going back to that rubric, it’s important to maintain that knowledge that you’ve learned and gained through your schooling, but also remembering that each person is a human being and they are scared.  I think that erasing that bedrail can really make a change.  That’s what I’ve experienced being both a patient and now a medical professional. Continue reading “How do you want to be remembered?”

A Call to Action: It’s Time to Break Another Glass Ceiling

A Call to Action: It’s Time to Break Another Glass Ceiling
By Lisa Freeman, Member, Planetree Patient and Family Partnership Council and Executive Director, Connecticut Center for Patient Safety Lisa-Freeman

Patient-centeredness crystalizes around the patient/family member being a full and equal member of the patient’s care team.  Everything is done with the patient rather than for the patient.  This concept is what differentiates patient-centered care from patient-focused care, and has been correlated to better outcomes, higher patient satisfaction and lower costs.

For many patients and family members like myself, we accept patent-centeredness as a given, the only way that it should be. And yet, as I have become more familiar with the healthcare system, it has become clear that patient-centered care represents a stark departure from business as usual.  It often requires significant changes involving new ways of thinking and new ways of doing things.

These days, discussing and debating patient-centered care as a solution for bringing about safe, high quality care while reducing the overall cost of healthcare is a hot topic among healthcare governing boards.  But when it comes to role modeling the new ways of thinking and new ways of doing things in this new paradigm of patient partnership, most healthcare boards are falling short.

Today, in most healthcare organizations—even those celebrated as among the most patient-centered—boards and governing committees lack the pivotal patient/family member perspective.  In other words, the typical board make-up has remained more or less unchanged even as expectations about the role patients will play as partners in achieving a high quality, high value healthcare system have been radically upended.  At most healthcare organizations, the boards are often made up of community business leaders (lay people) and perhaps some physicians and other healthcare stakeholders who bring their related experience to board-level discussions.  But where are the patients and family members? Continue reading “A Call to Action: It’s Time to Break Another Glass Ceiling”