Actively listening to patients should be an essential part of every health care encounter and is especially important for those facing complex health challenges and difficult socioeconomic circumstances. But in many instances, the patient’s point of view is not fully considered. Anne-Marie J. Audet, MD, is trying to change that. She is United Hospital Fund’s senior medical officer and oversees our work on patient-centered care. This includes UHF’s Patient-Reported Outcomes in Primary Care-New York initiative—which explored the feasibility of integrating patient-reported outcomes into primary care—as well as a new UHF endeavor which will examine information-sharing between patients and providers in the context of co-managing chronic conditions. We asked her to talk about these critical efforts.
An abridged version of this Q&A appeared in the Fall 2019 issue of Blueprint.
Q: What is the most important goal of UHF’s work in patient-centered care?
A: To support the efforts of institutions and providers to be responsive to the people they serve. Patients come to providers for a reason, and it’s important to know what that reason is and to not fall back on one’s own professional agenda to drive the conversation. Through UHF’s work on quality and other people’s work on patient-centered care, we realized that we are still in the pre-Copernican stage: the health care system is designed so patients revolve around it—we need to change our view of the health care universe, so that the system revolves around the patient. And patient-centered care is integral to all our quality work. As leaders such as Don Berwick, founder of the Institute for Healthcare Improvement, have articulated, the question to ask is not, “What’s the matter with you?” but rather, “What matters to you?”
Q: How can listening to patients improve quality?
A: The beauty of listening to patients in their own words is that you better understand their goals, and then you can look at the challenges they are facing in achieving them. So, if a challenge is, “Where I live, there is just no healthy food, and I can’t afford to travel farther,” then throwing medications at them will do absolutely nothing. There are basic things you need to get from your patient: What are your goals? What are your challenges? The first priority would be to explore options and identify resources for the person to fill this need. Basically, the provider and patient need to be on the same page about what they’re trying to achieve—only then can they together decide what the best course will be.
As a family caregiver, I’ve experienced feeling that the doctor was not on the same page with my mother. He saw her primarily as a disease in need of cure as opposed to a person coping with a difficult situation and seeking advice about how to manage her illness and live as fully as possible. We never got in the same boat, so that by the end of the visit, we’d met the doctor’s agenda, but not hers. And unfortunately, today’s electronic medical records don’t help either. They require providers to go through and check a standard list of questions—if there’s something you want to bring up that’s not on that list, then good luck.
Q: How can a disconnect between a patient and provider affect quality?
A: If you’re a physician or a nurse practitioner, and you have 25 patients on your list to see that day, you’ll need to quickly assess each one’s situation and develop a game plan for what is most important to deal with at that visit. You might review their medical records and find out that one patient will need a medication refill and that another will need a lab test, given that her past results were not great. So, you’ll have the information that is important for you to know before you see the patient. What can happen is that, when you actually meet the patient, you’ll bring your own pre-conceived idea about what the visit is about. You’ll enter the room thinking, “OK, we need to get your blood sugar under control—that’s my role today.” Now, the person coming to visit you may have a totally different goal for the visit. So yes, they have diabetes, but in fact, they’re coming to see you because they can’t seem to function well: they’re drinking water all the time, and they have to use the bathroom all the time, and it’s having an impact on their daily work… and they have a plan to attend their grandson’s party, and they just can’t see how they’re going to manage that.
As a provider, if you come in with your agenda and you’re not able to understand what’s on the patient’s mind, you’ll have lost a great opportunity to get on the same page. The patient’s primary goal is to seek advice about how to manage her symptoms, which are really interfering with her quality of life and her function. That’s where the disconnect may happen—for the provider, the glucose level is the priority, but for the patient, it’s her symptoms. If the connection between these two goals is made, then both provider and patient will be more likely to reach their goals.
Q: Why is patient-centered care so important to UHF’s quality improvement work?
A: Patient-centered care is certainly not a new concept, and if you think about it, what else should care be but centered on the patient? It’s a pretty vague term and one that does not resonate very well with providers, because providers will say, “Well, what do you think?... Of course, we’re patient-centered. Everything we do is for patients.”
And I’d say that this response is honest and well-intentioned. But things are a bit more complicated than that. In many other industries, the customer is usually the one whose perspective is key to assessing how well their needs are met. Not so much in health care. We have lots of measures of quality: readmission rates, standards for blood pressure, etc. These are really important, but they are provider-centric. What’s often missing is a patient-defined measure of quality. The good news is that this imbalance between patient- and provider-focused perspectives of quality is changing rapidly. Amazon, Yelp, and other platforms for eliciting customer comments are filtering into health care too. Several payers, including the Centers for Medicare & Medicaid Services (CMS), require a validated survey of patients’ experiences with care, and results are posted on the CMS Hospital Compare website. Some health care systems have started to post patient experience results as well as patient comments on their websites. So more and more, the perspective of patients is being sought, and it’s not only about their experience with care, but also about their care outcomes—symptom improvement, decreased pain when walking, return to work after surgery. One of UHF’s goals is to help advance these changes.
Q: Can you tell us about UHF’s work to amplify the patient’s voice through the patient-reported outcomes project?
A: We organized an 18-month collaborative with primary care practices in three health care organizations to test their implementation of patients’ self-reported goals and outcomes in practice. The primary care practices were committed to sharing lessons about how to make changes to achieve this goal. Each site selected a different outcome based on their patient population. We brought experts to speak to the collaborative participants about various practical issues, such as creating an environment where patients feel safe to report their experiences and outcomes. This can help streamline the collection and effective sharing of this information between patients and providers. The teams met for half a day on three occasions to share their lessons and get feedback from their peers. From this rich work, UHF produced and published an implementation guide that provides a practical model for how a health care team could begin to do this. We also provided examples of patient questionnaires and other resources. We wrote three short case studies to highlight the specific work of each of the three organizations, since they focused on different patient populations and outcomes. For example, one practice focused on caring for patients with depression, another focused on goal-setting and outcomes of pregnant women, and the other focused on patients’ goals around social needs and the social determinants of health. As a group, participants gained some great insights about the challenges of including patient-reported outcomes in daily practice, and they also identified solutions and approaches to those problems.
I think the benefit of the project was much bigger than collecting patient-reported information: it also helped develop trust among the patients and the practice. The patients were positively surprised that their health care team cared about them and cared to ask those questions. It showed them that the culture of the practices valued their patients. Once you start to have these kinds of conversations with patients and show that you care, then they’re more likely to come to you and even volunteer that information. And providers also benefited—they felt that they knew more about their patients and were able to make a real difference in what mattered to them. For me, one big realization was that patient-reported information needs to be considered as gold and treated with as much value as biometric information, such as lab results or other test results. When you lose a blood test result, and it needs to be repeated, that is wasteful for everyone. So why should a patient’s report about their symptoms or quality of life not be collected and recorded in their medical record with as much acuity as their blood pressure reading? That’s a big change in thinking for the health care system. And it has huge implications for how we measure quality.
Q: In the patient-reported outcomes project, what did you find was on patients’ minds?
A: For many, what mattered most in terms of their health was related to social needs and the social determinants of health, especially for vulnerable patients. They reported being affected by a lot of social health stressors, like a lack of healthy food in their neighborhood or partner violence. Before providers could work on their clinical goals, i.e. blood glucose control, it was clear that they first needed to address patients’ most pressing goals. And the patients’ goals might be very different from the providers’ and might include, for example, the need for financial assistance to cover the cost of insulin.
Q: Are there any particular stories from this work that stand out for you?
A: One of the primary care teams in the collaborative told the story of a patient who was pregnant and also had diabetes. She needed to be followed closely because if her blood glucose was not well controlled, this could affect her baby. During one of her visits, she started to cry. The member of the team who was with her listened, and the patient felt safe enough to reveal to her what was so distressing. She’d left an abusive relationship, and she had a court order protecting her against her partner. The problem was that she was really scared she might come across him on her way to the pharmacy. So, she simply didn’t go to fill her medications. Once the team got that information, the shared goal became finding her a safe way of getting her medications. Instead of setting a clinical goal—"this patient’s blood glucose is not under control now, and we absolutely need to control that”—the team was able to focus on her safety and how she could get the medication to achieve better control and protect her growing baby.
Q: In your view, as a physician and quality improvement professional, how has patient-centered care evolved over time?
A: Over the past 25 years, as a physician focused on quality improvement, I would say that we’ve seen steady progress in our professional understanding of what quality means. On the other hand, we’ve also been much slower at figuring out that patients should also contribute to that definition. It’s fascinating to me that the principles of quality were brought into health care from other industries, where standardization and customer service are top priorities. Health care has made great strides in standardizing medical management through evidence-based practice guidelines as well as standardized workflows and processes of care—for example, the use of checklists in the operating room. There is no doubt that these innovations have led to significant improvements in quality of care. But I don’t think we can say the same for the “customer service” aspect of quality. Service in health care also involves the quality of relationships between patients and providers. And this is even more important since the nature of the “service” required by people today is quite a bit more complex than it has ever been. People are living longer and with many chronic conditions. At the same time, our clinical armamentarium has grown dramatically in size and sophistication. Today, when a person needs care, it’s less likely to be for a quick problem that can be fixed in one visit. It’s more likely to be complicated and to demand long-term attention. That requires a relationship between the patient and the provider team, as opposed to a transactional exchange that works for short-term, reversible illnesses such as food poisoning. A person living with a chronic condition needs to trust the health care team they’re working with because they are going to experience their own unique ups and downs in health over time.
Q: What are the unintended consequences of standardization of health care?
A: I wonder if we’ve focused too much on efforts at standardization, and whether we haven’t paid enough attention to how the individual person fares. It’s like in other industries where big chains replace the more local and personal shops. People feel de-personalized and lost in a huge system that does not recognize their humanity. My question is: How can we customize standardization in much the same way we would customize mass production? UHF’s work on patient-centered care aims to ensure that the patient is the center of care, as opposed to the disease being the center of care. Even though a practice might have a well-established routine to care for diabetes, with clear guidelines for when to refer patients to a diabetic educator, a patient’s care needs to be tailored to her own particular circumstances—as we learned from the pregnant woman with diabetes. This is why we’re also focusing on the notion of collecting information from patients—information about what matters to them, their values, how they make decisions, their level of confidence living with a chronic condition. This is information that is unique to the individual yet has a significant implication for providers’ care management and shared decision-making. For example, a person may seek consultation regarding a hip replacement, and when the surgeon explores her goals, he may discover that her life’s passion—and reason for living—is to hike in the mountains or snowshoe in winter. Another person may seek advice on a hip replacement because what matters most to her is to be able to play with her grandchildren. The goals of care are clearly very different, and the shared decision-making as to what is best for each patient might differ.
Q: Can you talk about some of UHF’s upcoming work in patient-centered care?
A: We’re working now with a primary care practice focusing on improving the care of patients living with diabetes. We’ll be looking at what information providers and patients need to share to be able to co-manage a chronic condition most effectively.
What we know about patients with chronic conditions is that their interactions with the clinical team, for the most part, are still in person and face to face. But we also know that lots of issues are bound to come up for patients in between visits: questions about medications, new symptoms, worries about not reaching a goal, for example. Given how busy providers are, reaching someone via phone or making an appointment may not meet the patient’s need at that particular moment. So, UHF will be exploring a digital solution to support providers and patients as they co-manage the person’s condition and in the context of daily life. We will do this with a dashboard that has both the information that matters to patients and providers.
We’ll be working with patients and providers to co-design the content and display of the dashboard. Together, they will explore specific areas where communication would be a priority and identify what information they would share and how they would share it. For example, if a patient who is already on several medications is started on a new medication that could lead to side effects, the provider and the patient would agree to a virtual check-in using the dashboard. The provider would send a short questionnaire to assess how the patient is doing with the medication, and depending on what the patient reports, would either suggest some changes or advise continuing as is. We think this could be revolutionary from a communications perspective.
UHF’s Patient-Reported Outcomes in Primary Care-New York (PROPC-NY) project was supported by grant from the Engelberg Foundation. To learn more about the PROPC-NY initiative and to access the implementation guide and other resources, go to https://uhfnyc.org/publications/publication/PROPC-NY-resources/.
