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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 8, Spring 2014

HCA starts advisory council

We would like to formally welcome our newest Patient Advisory Council in Health Care Associates (HCA). Patient/Family Advisor Erica Dente interviewed Leonor Fernandez, MD and Nicole Rioles, Project Manager in HCA, who co-facilitate the HCA Patient Advisory Council.

What was the catalyst for creating Patient Advisory Council in HCA?

This is a time of change in health care, and that gives room to new ways of doing things. HCA is working toward creating a more integrated system of care or “medical home,” and the creation of a Patient Advisory Council is an important part of that transformation. Patient engagement and two-way communication are essential to that model. Having Patient and Family Advisory Councils throughout BIDMC gave us a wonderful blueprint for the creation of this Council.

We want to engage patients so that their voices are heard and their perspectives come through clearly. We see health care as a partnership in which we work together, caregivers and patient, to promote wellness, and to prevent, manage, and treat any illness. How people live and what they do at home and at work, away from HCA, may be the most important determinant of their health. Many health conditions are chronic, requiring people to take charge of their treatment.  We need to give folks the tools to do this well, and the support to feel like they are not alone in their care.

At a broader level, there is a greater realization that both the quality and safety of care improve when patients know more about the process of health care. We are inviting patients to read their notes in an OpenNotes initiative, and to be our partners in their care. The formation of a Patient Advisory Council is a natural extension of this philosophy. We need patients to help guide us as we reorganize care to make it reach the highest quality, guided by a philosophy of excellence, equity, efficiency, and most fundamentally, by humanism.

Was there any resistance among providers in HCA in forming such a council?  If so, what were some of the concerns? 

The initial response from doctors and staff has been one of curiosity. There is a lot of excitement about the ability to get input from patients in real time in a more "systematic" fashion . There’s nothing like being in the patients’ or patients’ family’s shoes--more and more, our staff recognize the immense value of hearing that perspective as we make decisions.

We are still evaluating where and how the patient perspective can be most valuable. For example, what committees should patients be on?  How do we make sure our language is meaningful to advisors, who may not be familiar with our jargon? 

We are also thinking about how best to bring other HCA staff to our regular Advisory Council meetings. There are several staff interested in presenting ideas to the PFAC. We want to balance our goals as a practice with the goals of the patient advisors.

One interesting aspect we have thought a lot about has to do with privacy. It is critical that we always respect patient privacy and observe HIPAA rules. To address any privacy concerns, any clinical discussions or case studies that are shared with the Advisors are de-identified or aggregated. All advisors complete the same HIPAA training and education as BIDMC volunteers.

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

Our hospital has taken a pioneering role in this area. The hospital’s Social Work department has already created many outstanding advisory councils that help guide the decisions of many departments, such as the ICU Patient and Family Advisory Council. The Social Work/Patient and Family Engagement leadership gave us very helpful advice for BIDMC PFAC screening models.

Our mission was to bring together a diverse group of patients with varied perspectives to help represent and inform our discussions.  We sought advisors who are thoughtful, and who will draw from their own experiences and simultaneously think about how some change would affect *all* patients in our practice. In order to identify good candidates, we explained our goals to doctors, nurses, and social workers within HCA, and asked them to nominate patients who they felt were appropriate for this role.

We initially identified approximately 25 candidates. After a 15-20 minute phone interview, about half of those were invited to one of three 60-minute group interviews. We invited nine advisors to join our Council,  and we may eventually expand the group to include up to 12 advisors.

Have there been any surprises as you’ve gotten started meeting and working with advisors?

It is very, very powerful to witness the patient perspective. We see that during our own meetings and conversations,  and we see it when doctors and staff in HCA hear about their perspectives and requests. The patient perspective garners a lot of respect from providers and administrative staff.  Everyone is excited to make use of this wonderful resource to guide us into better decisions.

As an example, we gave the advisors a couple of documents to review, which had already been reviewed by many staff.  One advisor emailed us back with feedback that shed a new light on the materials that we clearly were unable to see. I was surprised because we had edited the document and thought we did a thorough job, but the notes and suggestions this advisor shared with us included ideas we would never have thought about. It really helps to have someone that is not in “health care speak” to bring fresh eyes to the table.

What do you hope to gain from forming a council?

HCA has been working on redesigning how our practice operates. We hope that our advisors - and by extension, our patients - can be engaged in shaping our future so that  their wishes, preferences and perspective are reflected in our transformation.

Are there specific projects you are working on?  If so, can you share what those are?

Our biggest project is HCA’s overall transition into team-based care. This means that each patient has been matched to a multidisciplinary team that includes residents, attending physicians, nurses, medical assistants, phone staff, and social workers. We aren’t looking to replace the doctor-patient relationship, but rather to enrich the patients’ experience and expand the number of people in their trust and on their care team. Our advisors will play an important role in guiding us on this transformation.

As we update our informational materials, we are getting feedback from our advisors. Our advisors’ review lets us look with new eyes, and that has been a huge gift.

We would also like the group of advisors to select a patient co-facilitator to co-lead alongside Dr. Fernandez.

What do you hope to accomplish in the first year of the advisory council?

While we are in a facilitation role with the council, the members will really drive the recommendations.  We are curious what they will come up with!

Is there anything our other advisory councils can do to ensure success for the HCA council?

Interesting question! In our first meeting, advisors had many questions about their role. While each BIDMC advisory council may decide, at a local level, how they function, it would be helpful to have many standard templates and processes. It would let us stay focused on the goals and accomplishments of the Council.

We would love to learn from other Councils about the "mechanics" of their meetings and their function.  How do they identify projects and agenda items ? How difficult has it been to promote changes?  How do we ensure that all council members feel heard? We are all learning together. It’s exciting, and it will make health care better and hopefully more rewarding for patients, nurses, and doctors alike.

"What you can do" for patient engagement

It was Dr. Sigall Bell’s nearly fifteen years of advocating for safety, transparency, and communication with patients in the health care system that made her the perfect first-ever keynote speaker for BIDMC’s annual Advisor Appreciation Event in November. During her speech, Bell eloquently highlighted the importance of patient engagement in the health care system and how the work of patient and family advisors is instrumental to the success of BIDMC and progress in health care.

Since 2000 when she concluded her residency, Bell has been involved with health care from a systems perspective, worked internationally in the field of infectious disease, and focused on the patient experience and humanism in medicine. This focus led her to developing a writing program for medical students, fostering reflective practice and writing skills early in medical education.  Later she co-developed a curriculum on the human dimensions of medical error based on a documentary film of several patients and families across the country who had experienced harmful errors.  “Tom Delbanco’s invitation to join the curriculum development team made the most tangible change in my career path, moving me squarely towards patient experience and safety,” says Bell.  Now she researches patient and family engagement through transparency in care, the patient and family experience in medical error disclosure, and the effects of organizational culture on patient safety.

During her keynote speech at the Advisor Appreciation Event, Bell discussed many ways advisors make a difference in health care, and mentioned “6 Things You Can Do” as an engaged patient or health care provider to help promote safety, transparency and compassionate communication in an evolving health care system. These “6 Things” are:

  • Give feedback
  • Think up new metrics
  • “Flip the clinic”
  • Share “sticky” ideas
  • Explore the “third space”
  • Spread gratitude

We asked Bell to take a deeper dive into these ideas.

Give Feedback

“We need to welcome patients into health care education,” explains Bell. Although we have come a long way with innovative educational programs, patient perspectives are still relatively missing from clinician education. Sometimes we focus so much on well-intentioned advanced technical delivery of care that we pay less attention to how the patient experiences or receives that care.  Sharing an anecdote of a medical student who was reprimanded by his teacher for being too slow, but later thanked by a patient for “the way [he spoke] – with so much compassion,” Bell says that getting patient feedback is the perfect opportunity for introducing the patient perspective into the educational process. “If you can tell a clinician what did or did not go well, with the goal of improving things together, you are contributing to education. And encouraging clinicians to ask for feedback from patients provides a new perspective from the expert witnesses of our care.” Closely related to giving feedback is empowering patients to ask questions.  Engaging patients and family as partners in safety will require making them feel comfortable to speak up.

Develop New  Metrics

A longstanding reality in medicine and other professions, people tend to perform to the yardstick.  Carefully shaping the way we are measured can powerfully shape the way we behave.  What new metrics can we envision that would reward optimizing the patient and family experience? Developing a metric that effectively measures empathy and compassionate communication has proven more challenging than rote yes/no, black and white checklists, but that is what is necessary to effectively teach about patient experience and create more robust relationships with patients. Bell encourages discovering the answers to questions like “What’s the most important thing you look for in a provider?” or “What are some important things you’d like me to know about you?” that could influence the way providers routinely interact with patients. But effective evaluative questions that assess how well clinicians engage patients and families in care require dedicated attention. Bell believes patients and clinicians can work together to create metrics for the relational aspects of care that can be used in medical education.  Metrics is one way to say, “This is important.”

Flip the Clinic

Based on the idea of “The Flipped Classroom” coined by Salman Kahn, innovators at the Robert Wood Johnson Foundation are now considering how to “Flip the Clinic.” The idea is to maximize clinic time for key face-to-face interactions and more challenging or in-depth discussions, while relegating non-interactive components of care to the home or waiting room. Building on the model of sharing provider notes with patients through OpenNotes, which allows patients to learn more about their health conditions and “how the doctor is thinking in the comfort of their own home,” Bell is hoping this and other such innovations can help to "Flip the Clinic" and use time shared by clinicians and patients most effectively. The goal is to develop a more collaborative health experience for clinicians and patients. Other novel approaches await discovery or are already under development.  Here too, new metrics can help guide more optimal use of the clinic. Bell explains, “If we are going to revolutionize the way to think about how healthcare is being delivered, the time is now.”

Share Sticky Ideas

On a twist of Atul Gawande’s slow and fast ideas, Bell encouraged “sticky ideas” -- ideas that cannot be forgotten once they are introduced.  Just as texting powerfully changed the way we communicate, she encourages thinking and talking about innovations in collaborative care with patients to introduce concepts that stick in health care delivery. Actively discussing ideas with other patients and providers, while developing them, creates momentum that can help them spread and grow. She offers a challenge: How could we change the practice of medicine so that patient and family engagement becomes something we can’t imagine ever having lived without?

Explore the “Third Space”

It was an advisor who told Dr. Bell how interesting she found her role because hospital committee meetings are often either about the patient or the physician perspective but “there are very few experiences where we bridge the two worlds and meet in the middle.”

“How does it affect the patient?” or “What does the clinician need to know?” are questions often asked as programs or processes are developed. But, the question that really needs to be asked is, “How does this intervention affect the relationship between the patient and the clinician?” And how do we best cultivate the relationship by better understanding how clinicians and patients optimally work together? Rather than examining isolated aspects of patient or provider needs, the middle or “third” space focuses on a dynamic interaction, an area of vast potential where the patient and clinician space is shared. Patient and family advisors offer a powerful bridge for better understanding the “third space.” It is in this space that Bell hopes, with dedicated attention, a universal definition of patient engagement may emerge.  What can patients and providers discover there? What can we build and create together?  Bell also notes that clinicians can “think with two heads,” bringing the patient perspective into meetings, guideline development, and other aspects of health care leadership, by consistently asking themselves, “How would patients feel about this…?” Such mindfulness can also contribute to honoring the third space.

Spread the Gratitude

In addition to being appropriately themed, as this talk was around Thanksgiving, Bell began to think about “the world of gratitude” and the power of appreciating the wonderful things around us. Bell encourages leading with gratitude when thinking about the health care system. Bell elaborates, “Naturally, we may think about ways the health care system is broken; however, if we frame our mindset in positive emotions, we begin to recognize the many things we do remarkably well.” Thinking this way could be the start of a culture change. “If we can focus on what is excellent, we can encourage more excellence, and create an environment where people feel welcome to contribute.” As engaged patients and providers, Bell encourages us to “invite kindness to be the leading principle” in our care.

Primary care, patient roles, and a physician's perspective - Part 3

Dr. Amy Ship has informed us about the role of a doctor and how to prepare for our doctors’ appointments as patients. Now, in the final installment of this three-part interview, she will help us understand how to have a partnership with our doctors to receive the best care possible.

Is there anything a patient should know about a primary care physician role and responsibilities in order to best use their time together?

No one says to a patient, “You have a 15 minute appointment.” They say, ”You have a 10:15 appointment and you stay until you get all you need.” But the doctor has a 15 minute window. So when you are 10 minutes late and your doctor is on time, the doctor is the one that is in an incredibly bad place; because the patient is expecting a long appointment, and you have five minutes. I think the fact we don’t tell patients how long their appointments are is incredibly unfair, because it puts a lot of unnecessary pressure on the doctors. That’s why focusing on how we can help is best, because we want to help, but under the time limitations we have.

How can patient and provider best partner together?

I love the idea of partnership; I think this is a relationship [patient and physician] that builds. Ideally you will be able to ask your patient “What do you want my role to be?” and provide them with their needs, but there isn’t always time because we are required to do so much at an appointment. But if a patient has a clear idea or hope of what they want their doctor to be for them, the clearer they can be the better, the relationship truly has a chance to build. That doesn’t mean the doctor can be that for them, but knowing what the patients hopes for can be really great. Even if a patient says, “I don’t like to take medications,” or whatever is most important to them about the relationship.

How do you get patients to engage in their own care?

It is a constant battle - if a doctor could be a procedure we would say “Do this, this, this and this” and it would be done. But that is not how people work. It is a negotiation and it takes a lot of time. We have to ask what is getting in the way if a patient is not able to adhere to a treatment plan; sometimes they don’t have time, money, or access, or are more afraid of the treatments than they are of what they are living with. That’s part of the job of taking care of somebody; you have to find out what’s going on. With that being said, changing behavior is one of the hardest things that any of us does; I think there are too many clinicians that think, “If I tell a patient to do something they are going to do it.” It is incredibly hard for someone to change their OWN behavior, even when they are motivated, so to believe that we can change others’ behaviors is really a delusion. But you begin to negotiate and find out what is going on. People change themselves, you can’t change anybody else; but sometimes I find when people know they are in a relationship with someone that is committed to helping them through the change, it really helps them with the change. But it’s them making the change and me coaching, going “Yay!”

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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