November/December 2012, Issue 57

Moving Forward with

Patient- and Family-Centered Care 

Partnerships for Quality and Safety

An Intensive Training Seminar

April 15—April 18, 2013

Annapolis, MD

Registration Opening Soon

The Institute for Patient- and Family-Centered Care to Host Picker Institute Website
What Does It Mean To Be A Patient Advocate?
Transforming Patient-Centered Research: Building Partnerships and Promising Models
The Institute for Patient- and Family-Centered Care Launches New Website Section on Videos
AVAILABLE NOW!! Revised! Developing Patient- and Family-Centered Vision, Mission, and Philsophy of Care Statements
Institute for Patient- and
Family-Centered Care
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The Institute for Patient- and Family-Centered Care to Host Picker Institute Website

The Institute for Patient- and Family-Centered Care is honored to announce that it has been chosen to host the Picker Institute website, effective December 31, 2012.

The Picker Institute, an independent nonprofit organization dedicated to advancing the principles of patient-centered care, has worked in partnership with educational institutions and other committed organizations and individuals to sponsor Picker Institute awards, research, and education to promote patient-centered care and the patient-centered care movement. Picker Institute values include: "All patients deserve high-quality healthcare, and patients' views and experiences are integral to successful improvement efforts."

It is a privilege to continue the vision and legacy of Harvey Picker and the pioneering work of the Picker Institute as it ceases operations at the end of 2012. The Institute for Patient- and Family-Centered Care joins several organizations to carry on this important work:

  • Institute for Healthcare Improvement ~ Always Events®
  • Planetree ~ Harvey Picker Center of Innovation and Applied Research in Long-Term Care 
  • Gold Foundation ~ Graduate Medical Education Challenge Grant Program   
  • Institute for Patient- and Family-Centered Care ~ Picker Institute Website Archive


Lucile O. Hanscom, Executive Director of the Picker Institute—who has dedicated more than two decades to fostering a broader understanding of the theoretical and practical changes needed to facilitate a more patient-centered approach to health care—was honored by Planetree for her extraordinary achievements in patient-centered care. Ms. Hanscom accepted Planetree's 2012 Patient-Centered Care Visionary Leadership Award at a ceremony on Oct. 3, 2012, in Palm Desert, California.

Susan B. Frampton, PhD, the president of Planetree, cited Lucile Hanscom for her “focus on the concerns of patients and other health care consumers" stating that "Lucile has served on the Planetree Board of Directors and guided Picker Institute in partnership with Planetree on several projects...including the Patient-Centered Care Improvement Guide, the Long-Term Care Improvement Guide and, most recently, the Harvey Picker Center for Innovation and Applied Research. She is most deserving of this award for patient-centered leadership.”

Learn more about the Picker Institute, the upcoming website changes, and Lucile Hanscom's recent award at the Picker Institute website.

What Does It Mean To Be A Patient Advocate?

This excerpt—used with permission—is based on Marlene Fondrick's patient journal from the Caring Bridge. Marlene Fondrick, RN, BSN, MSN, is the former Vice President for Patient Care Services at Children's Hospital in St. Paul, Minnesota, and current faculty member for the Institute for Patient- and Family-Centered Care. 

What does it mean to be a patient advocate? It means partnering with health care providers in ways that are different from what has been done in the past. It's about advocating for myself, for my family, and having skills to do so.

It means taking someone with you when you go to appointments with your care provider. And having that person help advocate for you. It means being a true partner in decisions about your health care. Research has shown that when patients, along with their families, partner with health care providers in establishing a plan of care, the outcomes are better primarily because patients actually follow the plan. Partnering means doing "with" patients and their families rather than "to" or "for" them.
Things have not always gone well along my breast cancer journey. However the positives have far outweighed the negatives. If you want things to be different, then you have to give feedback about what's not working so well. But, in reality, that is not easy to do.

The day I received the diagnosis of ductal carcinoma in situ (DCIS), a care provider from one hospital called me first. Then, while sitting in the clinic waiting room to meet with the surgeon, I was called by the radiologist from the other hospital. Both callers explained that I had cancer but they told me in very different ways. It left me very confused. That kind of confusion erodes trust.

I took some risks to share feedback about my experience with hospital leaders. It is not easy to do; I will admit that. The CEO at the hospital in my community helped me set up some meetings with individuals at both hospitals. His support was helpful and encouraging. He is the type of CEO that invites feedback, acknowledging that things cannot improve or change if people don't get honest feedback from patients and families.

So I met with individuals in one hospital and video-conferenced with the other. The reactions were varied. Often, I felt like people listened and I made an impact. Other times I wasn't so sure.

But in both cases I received letters telling me that after thinking about what I told them, they would make changes. One of the letters clearly defined each item I had shared and what they were going to do about it. Getting that kind of feedback is so affirming.

Only one time was Don, my husband, not allowed to be with me. The professional who kept him out has no idea the impact that had on both of us at the time. It happened during a week when I was really down and I did not have the energy to advocate for myself. I was very emotionally fragile and cried over nothing. I wish now I could go back and relive that day. I would handle it differently. But I share that with you because there are times when patients, for whatever reason, are not able to advocate for themselves. That is the time to take an extra minute to listen—to ask why something is so important. I know this health care professional would have heard a story very different from what she was imagining was the issue.

For health professionals, if families or patients give you feedback, acknowledge how important that feedback is—even if you don't agree with it. It is this patient's perspective and we (the professionals) need to listen to that. Then take some time to think about it. If this patient or family member feels that way, do others? And what change can we make to improve the experience of the care we give. 

As a patient, listen carefully and take someone with you to listen. As a professional, listen carefully and don't feel like you have to have all the answers. Patients and their families can help you figure them out. 

I would love to hear your perspective on this or your stories about how your experiences impacted you, your family, or you as health care professionals. Challenge my thinking. Tell us about what happened to you by sending an email to I promise I will listen carefully.

Transforming Patient-Centered Research: Building Partnerships and Promising Models

In October, PCORI held a two-day meeting that included 150 patients, health care advocates, researchers, and other members of the health care community, to develop ideas, provide feedback, build community, and help PCORI generate guiding principles to ensure that its work is truly patient-centered. PCORI paid for travel and related expenses for invited attendees, the majority of whom were patients, caregivers, and staff of organizations representing them. According to Sue Sheridan, PCORI's Director of Patient Engagement, attendees "came to build community, generate the 'what ifs,' re-imagine patient-centered research, and help us build a culture of patient-centeredness, foundational principles and a sustainable architecture for patient engagement and rigorous research." Read more about Sue Sheridan's reflections on the meeting.

The October meeting included plenary sessions and five engagement sessions, which participants rotated among in order to provide PCORI with stakeholder input:

  • Identifying and Selecting Research Questions
  • Reviewing Research Proposals for Funding
  • Matching Patients and Stakeholders with Researchers
  • Disseminating Research to the Community
  • Evaluating PCORI's Patient and Stakeholder Engagement Programs

"The PCORI Workshop gathered together patients and researchers from all over the country...creating an atmosphere of innovation in patient-centered research," according to participant, Lisa Morrise, Patient Experience Coordinator, Primary Children's Medical Center, Salt Lake City. Lisa added, "The energy around developing a new paradigm featuring inclusion of patient and family members as part of an investigative team felt wonderful...The workshop was a wonderful example of how engaged and committed patients can assist in, and provide insight toward, moving a project forward." Another participant, Paula Clark, commented on the mix of attendees, "Some were researchers, patient advocacy group leaders, doctors, nurses, students, family caregivers and patients...I give much credit to the PCORI people for ferreting out these progressive insightful individuals. I have never been so hopeful about the future of medicine."

Workshop presenter, Maret Felzien, faculty member at Northeastern Junior College, Co-Chair for the Partnership of Academicians and Communities  for Translation (PACT) Council, and faculty member for the Institute for Patient- and Family-Centered Care, reported, "The sense of excitement around patient-driven systemic change in research permeated the two days of conversation. Part of every conversation were words like 'openness,' 'transparency' and 'involving patients, family, and community in a holistic and meaningful way.' While language like patient-centered and community-engaged are more and more common, PCORI is truly embracing the philosophy. This is an organization to watch and collaborate with."

Much of the meeting was webcast. Check out the agenda and learn more about the presenters and facilitators.

Interested in getting involved? For information on how to work with PCORI, send an e-mail to

The Institute for Patient- and Family-Centered Care Launches New Website Section on Videos

The Institute for Patient- and Family-Centered Care recently launched a new section of its website which features links to VIDEOS on a variety of patient- and family-centered topics. The Institute developed this new section of the website to serve as a resource for individuals and organizations working to advance their understanding and practice of patient- and family-centered care. The intent of this new section is to serve as a place where readers can find links to relevant videos from different health care organizations. Please note that the Institute did not produce these videos, so if you have questions or comments on the content of a particular video, please contact the producer of that video.

The Institute's intern, Julia MacPherson, did a wonderful job of compiling all sorts of terrific videos from a variety of sources, culled out the best ones, and organized them for inclusion on the Institute's website. The Institute is looking to add to this collection, so if you have videos that are candidates for inclusion, please send the link, with a short description to Institute. If you have other feedback on this new section, please let the Institute know.

Congratulations and Farewell to Our College Intern, Julia MacPherson

The Institute was thrilled that Julia MacPherson, a senior at the University of Maryland, joined the team for her final semester of college. Julia just completed a four-month internship at the Institute, as a requirement of earning her BS in Community Health, which she will receive later this month.
 Julia—while learning about the Institute and patient- and family-centered care—helped to improve the Institute's website in a variety of ways. For example, Julia developed additional content, including the new video page (see above article) and updated bibliographies.

Julia was a terrific addition to our team, and we will really miss her! A hearty congratulations to Julia on her December graduation, and best wishes for future endeavors!

AVAILABLE NOW!! Revised! Developing Patient- and Family-Centered Vision, Mission, and Philsophy of Care Statements

The Institute is pleased to announce the December release of the new 2012 edition of Developing Patient- and Family-Centered Vision, Mission, and Philosophy of Care Statements, by Elizabeth Crocker, Patty Devine Webster, and Beverley H. Johnson. This completely updated publication serves as a practical resource for health care organizations, hospitals, departments, units, long-term care communities, and clinics to work through the process of developing vision, mission, and philosophy of care statements that support and advance the practice of patient- and family-centered care. This resource is designed for administrative leaders, as well as clinicians, staff, and patient and family advisors, who are interested in transforming organizational culture. This book includes helpful definitions, sample statements from health care organizations, a seven-step process for forming and working with a group to develop and disseminate these statements, a series of exercises and self-assessment tools to shape thinking, stimulate discussion, and drive the process of change, and annotations of useful resources.

To learn more and order your copy, see the Institute’s Resource Page.


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