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Patient and Family Engagement E-Letter

Patient & Family Engagement at BIDMC

Our quarterly e-letter tells the stories behind patient and family engagement, featuring the perspectives of patient and family advisors and BIDMC staff who have worked with advisors.

Issue 9, Summer 2014

Advisory Council influences change in facilities and operations

Interview by Erica Dente, Patient/Family Advisor, with Universal Access Advisory Council members Katie McGuinness; Dennis Monty; and Sandy Novack

What and who was the catalyst for creating the Universal Access Council?

The catalyst for creating the Universal Access Council was findings following a site visit by the U.S. Department of Justice, which educated the BIDMC organization as to improvement needed to provide equal access to quality healthcare to all of our patients, including people with disabilities. One of the recommendations was to create an advisory group of patients, family, and staff who have disabilities who could assist the Medical Center in identifying and prioritizing accessibility issues as well as effective potential solutions. It became very clear when Council Members with sight and mobility impairments toured several areas within the Shapiro Building that their perspective and suggestions would be very valuable.  

As the Advisory Council membership has grown, they have provided personal experiences that keep us focused on improvements needed in our environment as well as defining the need to educate our staff and physicians on interacting with people with all kinds of disabilities. 

How did you recruit advisors and how many advisors do you currently have?

We have advertised the Universal Access Advisory Council in BIDMC waiting rooms and on the BIDMC website, talked with healthcare providers about patients or family members who would be valuable members, and reached out to community organizations working on improving access for people with disabilities to recruit members. We currently have six consumer advisors; staff advisors representing Facilities, Ambulatory Operations, and Patient and Family Engagement; and a consultant from a national accessibility planning firm. We are always interested in adding to the group’s membership.

What are some of the projects you have worked on to make BIDMC more accessible and were their any barriers to accomplishing these projects? Are there current projects you are working on? If so, can you share what those are?

The Universal Access Advisory Council has helped to underscore the importance of many, seemingly small changes throughout the hospital. One of the first projects undertaken was improvements to accessible parking. BIDMC added more accessible parking spaces for cars and for hi-top vans. It also added accessible parking information on the website, printed maps, and signage to guide patients and families to those spaces more easily than ever before.   

One of the Council’s members, Bob Chiaramonte,  American Sign Language Interpreter, has influenced the Medical Center to install video phones in the hospital’s major lobbies and its psychiatric unit. These allow people who use Sign Language to communicate with family members using sign language rather than relying on an interpreter while at the hospital. BIDMC is the first hospital in the area to have installed videophones, and is a leader in providing effective communication for people who are Deaf, hard of hearing, or have speech impediments.

Council Members and doctors have expressed appreciation for BIDMC’s addition of wheelchair accessible scales and height-adjustable exam tables in all of its clinics.  This medical equipment is essential for providing appropriate diagnostic medical information for patients who might otherwise not be able to use a scale or get safely on-and-off an exam table.  However, Council Members have also pointed out the importance of educating clinic staff in understanding and using these improvements. As a result, BIDMC’s Ambulatory Service Excellence Team is working with clinic managers to educate them about the new equipment and the importance of their use to ensure quality clinical care. This will include the development of protocols and regular training for staff to ensure they understand and recognize the importance of making this equipment available during a patient’s visit. A priority project for the group in the coming months is working on adding the question “Do you need any accommodations?” when patients call to make appointments so that needs can be anticipated in advance.  Long range the goal is to integrate these needs into a patient’s medical record so that it is available for all caregivers in all settings.

I came across this article ( some years ago when trying to help a loved one learn to pace herself due to a chronic limiting health issue.  I had for quite some time tried explain, giving ways in which to conserve energy and yet she still had difficulty and when she read this article, she was able to embrace this theory.  It had a powerful impact on how I view visible and invisible disabilities and wonder if you can expand on this.  How do you think as a society we can educate folks that not all disabilities are visible so that we cast away some of the harsh judgments that go on as a result?

Just like there are visible and invisible, or hidden, disabilities, there are visible and intangible access-related issues.  Accessible parking for a person with physical disabilities is a concrete, visible solution for someone who cannot walk far, for example, because accessible parking is located closest to the place a person needs to enter the Hospital. The Department of Justice settlement deals heavily with matters of removal of physical barriers to access. BIDMC, however, understands that access is more than accessible parking spaces and grab bars.  As a result, BIDMC is analyzing the intangible disability issues that arise such as how to make a hospital welcoming to people with a wide range of disabilities. If staff people have never known someone who is hard of hearing before, they may think that if they raise their voice loud enough, they will be heard. This is where hospital-wide training is important, so any person with a disability is sensitively dealt with and staff feel confident in how to handle various situations. The attitudes of staff -  ranging from receptionists to nurses and doctors to dieticians - can make or break the patient's health and sense of being respected. It is not, for instance, respectful, to joke about someone's cognitive impairment. While some slights are clearly unintentional and easily forgiven, attitudinal issues can leave lasting negative impressions with patients and family members. Because attitudes about disabilities and people with disabilities are largely intangible and hard to corral, they present a challenge to surmount. BIDMC’s Universal Access Advisory Council is encouraging regular, frequent, required sensitivity training for all staff levels to make lasting differences for health care for patients with and without disabilities.   

Is there anything our other advisory councils can do to continue to support the great work you are doing?

The work of BIDMC’s Universal Access Advisory Council is limited only by the number of advisors participating, and the depth of each person's reach at the Hospital. It is, therefore, essential to continually recruit and be open to new patient and family advisors joining the group, especially in disability areas underrepresented.  At the moment we are seeking advisors who could speak to the issues for people with disabilities when they are inpatients, or the issues for patients who have cognitive or emotional issues. Advisors who already actively volunteer with a different Patient Family Advisory Council might want to consider “cross fertilizing” their expertise or interests by also committing to participation with Universal Access Advisory council, or by referring people you may know who can contribute to discussion and action on accessibility issues. 

On the other hand, one does not have to commit to full council participation to make a significant contribution to universal access at BIDMC. The phrase “Notice something, say something” can be applied to access challenges. If you observe someone struggling or unable to do something, let our Council know, by contacting BIDMC's Facilities Planning Office at 617.632.7125. If you wonder why a process couldn't be simplified to make it more accessible, we want to know. Each and every one of you reading this E-newsletter could extend our Council’s reach into all facets of BIDMC.  We need you to be not just our eyes and ears, but our heart. We need compassionate hearts like yours to be on the lookout for unmet universal access needs, and help us develop sensitive and effective responses to meet those needs.

Human First: Stories get to the heart of BIDMC

By Betsy Lowe, Patient/Family Advisor

On the evening of March 21, 2014 the Ethics Support Service hosted the first ever Human First poster session. The project was started with a donation from an anonymous donor who wished to enhance the Human First campaign. Individuals from across the hospital were asked to illustrate how they exemplify the concept of, “Human First” in the work they do each day and submit their stories in writing. 

In all, fourteen posters were created with the help of the Marketing Department and Media Services and represent the contributions of 42 individuals which include physicians, nurses, chaplains, social workers, patients and volunteers. Each poster captured just one story or approach, but these stories encouraged readers to stop and reflect on their own experiences and interactions with patients. 

The posters were initially displayed in the Shapiro lobby before being relocated to the Leventhal Conference Room for the evening reception. There, attendees were given the opportunity to read each poster, meet the contributors and hear remarks from Lachlan Forrow, Director of Ethics and Palliative Care Programs, Marsha Maurer, Senior Vice President, Patient Care Services and Wendy McHugh, Clinical Nurse Ethicist and project lead for the event. 

Susan Johnson, a PFAC member and poster contributor was surprised by the large turnout and said, “It was nice to see everyone connect and embrace the Human First campaign.” She was pleased to see that people were interested in more than just the posters themselves, that the stories being told reflected who we are and what we are all about. 

BIDMC works to prevent the loss of dignity and respect

Interview by Erica Dente, Patient/Family Advisor, with project team Pat Folcarelli, RN, PhD; Kenneth Sands, MD; Barbara Sarnoff Lee, LICSW; Kristin O’Reilly, RN, MPH

First, congratulations on the grant awarded to BIDMCs ICUs from the Moore Foundation. Can you explain the process involved in securing such a grant? 

First and foremost, this grant was possible because early in 2012 the Moore Foundation made a strategic decision to focus on the elimination of preventable harms in the ICU by engaging patients and families in a redesigned health care system as the most promising way to transform the health care system. And, as a nationally recognized leader in the elimination of preventable harm and patient and family engagement, BIDMC was identified by the Foundation as a natural partner to join them in this pursuit. What came next is how we secured the grant. Unlike many opportunities of this magnitude, the Moore Foundation was seeking a set of partner institutions to work with them on shaping and executing the work to achieve their vision for redesigning workflow and improving patient and family engagement in the ICU.  Because of the depth of our capacity to do this work, BIDMC was able to work with the Foundation’s program officers to design a set of ambitious projects that were well-suited to our strengths as an institution. We received a planning grant in support of this early work, which allowed us to convene key project teams and engage a broad set of stakeholders and collaborators to figure out what would be required to do the work. The outcome of this process was our proposal to the Foundation, which was funded in November 2013.

What are the deliverables of this grant and over what period of time?  

Our grant will leverage an existing, long-standing partnership with collaborators at the Massachusetts Institute of Technology (MIT) to develop an operating model for leveraging system science and patient engagement to advance the goal of eliminating of preventable harm. BIDMC will continue the organization’s established practice of involving patients and families in their own care, while developing additional patient and family engagement strategies to deepen our understanding of threats to dignity and respect among patients receiving intensive care.

BIDMC will also leverage its nationally recognized position as a leading innovator in information technology (IT) towards the goal of providing more timely, informative, and actionable information to patients and providers alike, and will develop tools to support interventions designed to eliminate preventable harm in the ICU. At the end of the two year grant, we will have developed and produced an application (MyICU) that will encourage patients and their loved ones to participate in care, feel more engaged with staff and provide them with information that supports decision making.

This grant will run over a two year period of time, but we anticipate that the work will continue over a longer period. We aim to create technology that can be used in community hospitals, in recognition that most care today is delivered in those settings.

Here at BIDMCs we already do a tremendous job avoiding preventable harm…How do you envision the grant further aiding all preventable harm in the ICUs?  And, can you describe what is meant by preventable harm?

We have been working on our initiative to eliminate preventable harm since 2007. This has required defining harm and preventability as well as determining the main sources of harm that patients experience so that we can categorize them to measure progress.  Our definition of harm is:

  • any unintended physical injury resulting from or contributed to by medical care (including the absence of indicated medical treatment), that requires or prolongs hospitalization, and/or results in permanent disability or death.

Our definition of preventability is:

  • injury that results from failure to provide care to the existing institutional standard  or reasonable adaptation to the existing standard can be introduced that would be expected to decrease the risk of future injury by the same mechanism.

In this new work with ICU patients we are expanding the way we think about harm for our ICU patients to include delirium, loss of physical function as well as loss of respect and dignity as a harm. This new work involves agreeing on new definitions and developing the infrastructure to ensure that we can capture these events and respond to them.

BIDMC is part of a consortium of Moore grantees. Are there changes already being made in the ICUs because of what you're discovering through working with other health care systems?  

The Libretto Consortium is made up of four institutions: Johns Hopkins University, University California San Francisco, Brigham and Women’s Hospital and Beth Israel Deaconess Medical Center. As a whole, we want to move the needle on decreasing preventable harm in critical care nationwide.  In sharing our ideas and our measurement strategy, we will be able to see how we have decreased harm rates not just at our own institution, but at a variety of sites. Our aim is that the interventions we employ will be spreadable and thus adopted at medical centers across the country. 

Our collaboration within the consortium so far has been mostly around measurement and data collection strategies to ensure consistency across sites. I do think that moving forward there will be a wonderful opportunity to adjust some of our practices based on what we learn from our consortium peers and to share our knowledge to improve the care elsewhere. 

How have patient and family advisors already contributed to this work, and how do you see the voices of patients and families being valuable as you continue?  

Advisors have been part of the Moore grant process since the beginning. When we were in early discussions with the Moore Foundation, prior to be awarded the grant, we had two advisors (Erica Dente and David Ekstrom) as part of our team, talking about patient engagement in the ICU's from the patient/family advisor perspective. Both David and Erica have remained involved and serve on workgroups such as MyICU. As the MyICU project has evolved, the workgroup has taken ideas and concepts to the ICU PFAC so as to incorporate advisor feedback into the iterative design process.

The voices of patients and families will be critical to the ongoing success of this project. To achieve our overarching goals of preventing harm and mitigating the loss of dignity and respect, we will need active, ongoing engagement and partnership with patients and families. As "end users" of the MyICU application, they will help to guide us around what is most important and helpful to them so we meet their needs and preferences. This is the definition of patient-centered care!

Advisor Profile: Richard Hackel

By Richard S. Hackel, Patient Advisor

I am about to celebrate my 73rd birthday. 13 years ago the neurologists at BIDMC diagnosed that I had ALS commonly referred to as “Lou Gehrig’s disease.” This disease has been slow to disable my body. I am still able to dress myself, feed myself, talk by myself without computer assistance, and walk with the aid of a rolling walker.

In August 2005 I retired from the practice of law. I became a lawyer to help people. When I was a lawyer I specialized in consumer bankruptcy law and in that capacity I was able to help people who were overwhelmed by financial problems. I have always believed that I had a responsibility to “pay it forward.”

As an ALS patient at BIDMC I am a “member” of Clinic Connections, an association of BIDMC’s ALS patients and caregivers. On the second Wednesday of each month the neurologists at BIDMC conduct an ALS clinic. The patient sees their neurologist, and visits a physical therapist, an occupational therapist, a social worker, or has a pulmonary function test, or a swallowing test as determined by their neurologist. Clinic Connections provides a luncheon for the ALS patients and caregivers catered by BIDMC. The luncheon serves as an informal support group. I have been a member since its creation more than 6 years ago by another BIDMC ALS patient named Walter Bentson.

Almost two years ago I was asked if I would serve as a consumer advisor on the Universal Access Advisory Committee and I said yes. As a member I have had an opportunity to observe the substantial efforts made by other members of this Committee to make this hospital “user friendly” for disabled patients.

Together with other patient/consumer advocates we are able to comment upon the practical applications of or the need for services, devices, or accommodations for disabled patients, including deaf and blind.

It has been rewarding for me to serve on the Universal Access Advisory Committee as it is another way for me to “pay it forward.” Thank you for affording me this opportunity.

An opportunity to share experiences of "Code Blue" events

By Samuel Slavin, Harvard Medical Student

The moment when a patient’s heart stops beating, a “Code Blue,” can be one of the most emotionally difficult moments in the hospital—for loved ones and for the medical team. It is nearly impossible to be prepared for such an event and perhaps even more difficult to make sense of it afterwards.

As a medical student and former patient advocate, I have come to believe that those of us who have been present for “code blue” events have a unique opportunity. By sharing our own stories we can educate and emotionally prepare patients and families who may face similar crises. These stories may also resonate powerfully with others who have had experiences like our own.

As a way to share our stories, I am collaborating with Jay Allison, a Peabody award-winning radio producer, to make a radio program about “code blue” events. The interviews will involve reflecting on the experience of being resuscitated or witnessing the resuscitation attempt of a loved one. The final piece will be featured on public radio and possibly on the website of the BIDMC.

It would be a privilege to include your story in our project. If you are interested in participating or if you have any questions, please contact me, Samuel Slavin, at: or call 617.970.3776.

Looking forward to hearing from you.

Patient and Family Engagement E Letter - Archive

Now Recruiting - Intensive Care Unit Advisory Council

If you have had a care experience in a BIDMC Adult ICU, consider becoming an advisor and partner with us to help improve the quality of care for patients throughout our critical care units. 
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