Editor's note: Beverley H. Johnson is the President and Chief Executive Officer of the Institute for Patient- and Family-Centered Care. She has published widely on patient- and family-centered care issues and received numerous awards for her work to improve care quality, including the 1992 Lloyd Bentsen Award for leadership for family-centered care and the 2007 Changemaker Award by the Center for Health Design. She has consulted to more than 250 hospitals across the United States and Canada interested in becoming more patient and family centered in their delivery model. We spoke with her about the interface between patient- and family-centered care and patient safety.

Dr. Robert Wachter, Editor, AHRQ WebM&M: Can you define patient- and family-centered care?

Beverley H. Johnson: Patient- and family-centered care is an approach to the planning, implementation, and evaluation of health care, which is grounded in mutually respectful and beneficial partnerships among patients, families, and health care professionals. Patient- and family-centered care has four core concepts that are essential to quality and safety. The first concept is respect and dignity for all patients and families as well as for staff across disciplines and settings. Patient- and family-centered care changes the way we share information with patients and families. Information is shared in ways that are useful and affirming—that's the second concept. The third is participation. We know we get the best clinical outcomes when we encourage and support the active participation of patients and families in care and decision-making, particularly at the level they choose. Lastly, collaboration is at the heart of patient- and family-centered practice. It's not only collaboration in the clinical encounter, but also collaboration in patient safety, quality improvement, in the development of policies and programs, in the education of the next generation of clinicians and staff, and in research.

RW: I notice you said at the level they choose. I guess that implies that not all patients and families feel the same way about their degree of involvement and to the extent that they want to be the primary decision makers. How do you find that plays out and what should clinicians know about ascertaining patient and family preferences about how much they want to be the central decision-makers?

BJ: It is critically important to understand the patient and family and how involved they want to be in care. Their preferences may change over time, so finding out about their preferences needs to be a regular part of clinical discussions. At the beginning when building a relationship with patients and families in primary care, clinicians need to learn about patient and family values and preferences. Many people in our country today have been conditioned as passive recipients of care. "Trust us, we know best. Just do what we tell you to do." That approach by health care professionals is not going to keep people safe. It's not going to result in the best outcomes. We really need patients and families to see themselves as key members of their health care team and even members of their safety team.

RW: Is one of the obstacles to this the way that clinicians are trained and socialized? What have you seen in terms of innovations as to how to improve that?

BJ: One of the underlying principles with patient- and family-centered care is that clinicians and staff see strengths in everyone. By identifying strengths, the opportunity exists for patients and families to learn, acquire information, and become more involved in their own health care. We may see them at their most vulnerable times. Perhaps they've just received a new diagnosis and may not feel that they can even participate actively at that point. This is when we really need to connect with them. The skillset for encouraging participatory involvement can be taught to clinicians—how to connect with a patient and family at the level they prefer, help them see how they can make decisions that can enhance the quality of their life, and support them in managing their acute or chronic condition. We haven't always taught these skills to clinicians. Students and trainees need to be taught these communication skills in the classroom; these skills also need to be modeled in clinical settings. One great lever for change—change in education, change in experience of care, and change to improve safety—is changing the way rounds are conducted. If done at the bedside, with patients and families supported and encouraged to be part of the dialogue and the decision-making, this serves as a wonderful learning opportunity for future clinicians.

RW: You've probably watched a number of bedside rounds. I think clinicians may worry about the degree of frankness that they sometimes feel they need to engage in and whether they are giving too much information to patients and families. Do you worry about that at all?

BJ: Yes, and again it's important to ask people about their preferred level of participation. Sometimes a patient with cancer wants to be very involved in his or her care in the beginning, but then there is a complication, a relapse, or the situation changes in some other way, and the patient decides, "I don't want all that information. I want you to make those decisions." Again, it's building that relationship and having open communication. It's important to prepare patients and families for how to participate in rounds and to prepare the rounding team for how to work with patients and families. Patients and families need to understand that there may be times during the rounding process when a clinician is really teaching trainees. A clinician can say, "I'm going to be talking about some options and teaching our trainees." This is an opportunity for the students and residents on your team to learn how to communicate information to patients and families and make the distinction between care planning and clinical teaching for trainees.

RW: So it sounds like patients and families also need to be taught a little bit about how to be most productive in their side of the encounter. How do we do that?

BJ: Well, we do that in a number of ways. One, when patients are admitted to hospital, we have to encourage their involvement and say, "This is the way we do rounds on this floor and we hope that you will participate. This is not the only time we will share information with you. If we're not able to answer all your questions or for you to share all your observations at that time, someone can come back and talk with you. But, we really value your observations." We need to help both attending clinicians and trainees understand that we are not there just to answer questions—we also want to learn from patients' observations about how their body is responding to a new medication or therapy, their thoughts about the transition to home, their concerns about safety, their views about what happened and what didn't happen in the last 24 hours, and their perceptions about the plan of care.

RW: As we try to engage patients in new ways and also teach them a new set of skills, is technology helpful? I've seen examples of interactive Web sites and ways of educating the patient that are offline from the direct clinician–patient encounter, because obviously one of the concerns is time.

BJ: I think we need to use a variety of methods designed to reach patients and families more effectively. Most of today's research shows that bedside rounding with patients and families doesn't take a lot more time. Technology can help us here. Having some information easily available so that patients and family members can read about it on a smart phone, links to key Web sites for a patient with a new diagnosis of diabetes or for a family whose relative has congestive heart failure. We can provide these links so patients and families can learn at times and places convenient to them. With electronic health records, patients and families should have access to the daily recording of care and have a discharge summary when they leave the hospital. So many errors and the problems around readmissions occur, I think in part, because accurate useful information is not given to the patient, family, and the community provider at discharge. These are sensible value-added steps where technology can increase knowledge for patients and families.

RW: There's kind of a thread within the patient safety field these days about patients and families protecting themselves. Can you comment on what you think about that as a concept?

BJ: Years ago we worked with patients and families to develop a safety toolkit for them. One thing that was very clear was they didn't want the patient safety problem "dumped" on them. They wanted to feel that their health care would be handled in a safe manner. But patients and families should do some things that will help to protect themselves. We're all in this together. The first change is that we must no longer view families as visitors in hospitals. We've done a disservice and put patients at great risk by labeling families as visitors. Families need to be seen as allies for quality and safety. Years ago, The Joint Commission was quite explicit stating that patients should take a family member or a trusted friend with them to a hospital or clinic visit—family presence should not put health care professionals on the defensive. A second pair of ears to hear what we're told, help bring up the issues, and support the patient in making tough decisions must be welcomed. I think we have to get rid of the policies that prevent families from being present and we should make space, and comfortable space, if family members wish to stay with the patient.

RW: Part of the thread about patients and families getting more involved in their safety is that yes, patients and families can be eyes and ears. But it is also that they can and should, I'm going to say confront for lack of a more delicate word, their clinicians—for example if they noticed that they didn't clean their hands. That has to be difficult for patient and families to do. How do you find that that works?

BJ: I think it's very hard. I can remember a young man, a cancer patient in the Midwest who'd given me permission to interview him. He immediately challenged me and he said, "Do you have a cold?" I was startled in the way he spoke to me, but I said, "No I don't, but you were very smart to ask." And he said, "My physician told me that I cared more about my health than anyone else, and that I needed to be careful about who was going to be around me." This physician placed this patient as a key member of his safety team. I think that's important for patients and families. It's not easy to speak up for yourself. If we include patients and families in all the different key care planning and decision-making times, it gets easier, because patients, families, and the other members of the care team develop a more collegial relationship. Everyone becomes a team together. Then it's not quite as challenging to speak up about a safety concern. But I don't think all the responsibility for challenging people about hand-washing or other safety concerns, for instance, should be the burden of patients and families.

RW: I agree with you. And I also find that there are times where it feels to the clinicians like the level of confrontation in the room is so high that I wonder whether the patients are compromising their own safety—that clinicians may be reluctant to come in.

BJ: Right. If we can get back to the mindset that we're in a partnership together, we make decisions together, we share information together, we work on the safety team together in direct care, and the patient is not excluded at care planning times, it sets a different tone in the relationship. Patients, families, staff, and clinicians can then be more candid with each other in a respectful way.

RW: Let's say a hospital reads about the experiences of Dana-Farber and other places and decides to have patients and family members serving on key quality and safety committees. I can tell you from being on the inside that the next question is, how do we find the right person, the person who's going to articulate that point of view but frankly not be too confrontational. What's the answer?

BJ: One of the best ways to identify patients and families who can serve in constructive, helpful ways as patient and family advisors is to ask staff and clinicians. What you're really looking for is not necessarily someone who has had the best experience so they can share only wonderful glowing reviews of health care experiences. You want them to be able to share their experiences candidly and constructively in ways that others can learn from them. So even if the situation was just dreadful, mistakes were made, it was handled very poorly, can that person be constructive in describing the experience and suggesting solutions? Has the patient gotten beyond anger about the experience? Does the patient or family member have good listening skills so they can hear the perspectives of others? Patient and family advisors share perspectives and insights that are different than health care professionals. They provide a different way of looking at a situation. I think asking clinicians to make recommendations and then have a screening process to select advisors is really probably the most effective way.

Dartmouth used a very interesting approach, a community organizing approach, to recruit advisors. They connected with key organizations like the Fire Department, Lions Clubs, Rotary Clubs, and churches in the community and asked if they could nominate people who had had health care experiences who would be effective advisors. They were looking for people who felt comfortable speaking up in a group. This is not about who is the most educated—it's who brings real life experience to health care quality improvement and can participate in a variety of ways. At Dartmouth, there are now more than 130 advisors. They have participated in the development of an online safety course that is a competency requirement for all staff at the hospital. They have two patient advisors on their sentinel events committee. The Memorial Healthcare System in Hollywood, Florida has also been very committed to patient- and family-centered practice. Their patients helped design a daily medication reconciliation sheet so that patients and families get very familiar with their medications while they are in the hospital. This tool is preventing errors in the hospital, and by the time patients and families are ready to go home or to community care, they are much more knowledgeable about the medications they will be taking after their stay in the hospital. At Vanderbilt Medical Center, patient and family advisors participated in the development of the Patient Handbook. They ensured that key safety messages were meaningful to patients and families, conveying them with clarity in simple language and reinforcing visually with pictures.

RW: I want to ask about value-based purchasing and policy pressures that now mandate more attention to the patient's perspective because data from patient experience surveys are now publicly reported and influence the payments that hospitals get for taking care of Medicare patients.

BJ: We sponsor seminars twice a year. For the first time at our last seminar, administrative leaders, staff, and clinicians came with the intent to "fix their numbers." To me, that was the wrong approach. Yes, we need to improve patient experience scores, but much more importantly we need to change the culture of health care organizations. If leaders convey this is just a numbers game, I worry that they won't capture patients' perspectives about whether they were really involved in decisions about their health care or whether their family was able to be with them in ways they chose. Hospitals have to augment some of the standard national benchmarking surveys to make sure they are measuring patient and family engagement. With authentic patient and family partnerships, we will eventually save dollars, prevent errors, and achieve the best outcomes.

RW: Let's assume that surveys eventually ask the right questions. Do you think that public reporting of those data and having those data influence your payments are good policy directions or are they distractions?

BJ: Oh, I absolutely think the strategies to hold hospitals accountable for the patient experience are good policy directions, but again I would partner with patients and families at every step of the way to improve the experience of care. Many hospitals now have patient experience teams where they review data from the national benchmarking surveys. Patients and families ought to serve as members of these committees to help determine how best to respond to the data. What does the data mean? And from the perspective of patients and families, how might you address the issues and make improvements? I think the policy changes are in the right direction, and we need to hold people accountable for improving the experience of care from the perspective of patients and families.

RW: Obviously not all patients and families are in the same place to be engaged in their care, not only in terms of their own preferences but also in terms of differences in health literacy and mental status and language and all those things. How do you think about all those differences?

BJ: You're absolutely right. Patients and families come with different strengths to each health care experience. The first step is to recognize those strengths. Information about strengths, values, and preferences should be elicited initially in primary care interactions. Individuals should be encouraged to define their family and how they want them involved in care—family may be a spouse, a neighbor, an aunt. We really need to use technology to involve families—because for many families, the elderly patient may be halfway across the country. Technology can help in the sharing of useful information. My mom is 99 years old, very mentally alert, but she has some health issues. When she goes to the doctor, my daughter sends an e-mail with questions or observations. My mom takes her iPad to the doctor with this e-mail message to facilitate the communication. We can help coordinate care and keep my mom safe even though we live in three different states. Some families don't have this kind of family support. This process can work with community caregivers, we just need to reach out and include them in the process.

RW: Did I hear you say that your Mom who is 99 has an iPad?

BJ: That is correct. She uses it both for e-mail and looking at pictures of her 19 great grandchildren. But we definitely use it in terms of helping her have supportive conversations with her clinical team when a family member cannot be with her.