It has become evident to many in the health policy community that the delivery of truly patient-centered care depends on eliciting, and acting upon, meaningful feedback from patients and families. It was only a decade ago that patient experience of hospital care was first routinely publicly reported via the Hospital Consumer Assessment of Healthcare Providers and Systems, or HCAHPS survey. These metrics have become increasingly incorporated into Medicare value-based payment assessments. This congressional briefing will explored the status of patient experience measurement as the health care system continues to evolve towards a greater focus on value.
- The rationale for measuring patient experience in the health care system;
- The role of HCAHPS, and other patient experience measures, in value based purchasing arrangements; and
- Opportunities to better align measures with today’s understanding of patient experience.
Partner and Co-founder, Public Opinion Strategies
Mary Tinetti, M.D.
Gladys Phillips Crofoot Professor of Medicine (Geriatrics); Professor in the Institution for Social and Policy Studies; Section Chief, Geriatrics, Yale University
Sheila Delaney Moroney, MPH
Patient Experience Officer and Senior Director of Person-Centered Care Programs and Services, Hennepin Health Care
Shantanu Agrawal, M.D.
President and Chief Executive Officer, National Quality Forum
Sarah J. Dash, MPH
President and CEO, Alliance for Health Policy (Moderator)
This briefing was made possible with support from the Federation of American Hospitals.
12:00 p.m. – 12:10 p.m. Welcome and Introductions
- Sarah J. Dash, MPH
President and Chief Executive Officer, Alliance for Health Policy
- Chip Kahn, MPH
President and Chief Executive Officer, Federation of American Hospitals
12:10 p.m. – 1:00 p.m. Panelist Opening Remarks
- Mary Tinetti, M.D.
Gladys Philips Crofoot Professor of Medicine and Public Health and Chief of Geriatrics, Yale School of Medicine
- Shantanu Agrawal, M.D., M.Phil.
President and Chief Executive Officer, National Quality Forum
- Bill McInturff
Partner and Co-Founder, Public Opinion Strategies
- Sheila Delaney Moroney, MPH
Patient Experience Officer and Senior Director of Person-Centered Programs and Services, Hennepin Healthcare
- Denise Durgin Maloney, ACC
Executive Coach, Back Bay Leadership; Co-Chair, Global Patient and Family Advisory Board, The Beryl Institute
1:00 p.m. – 1:30 p.m. Question and Answer Session
Key Resources (listed chronologically, beginning with the most recent)
“Modernizing the HCAHPS Survey: Recommendations from Patient Experience Leaders.” Kahn, C., Salzberg, C., Foster, N., et al. Federation of American Hospitals, Association of American Medical Colleges, America’s Essential Hospitals, Catholic Health Association of the United States, and American Hospital Association. 2019. Print.
“The Next Generation of Measuring Patient Experience.” Kahn, C. and Salzberg, C. Health Affairs Blog. March 8, 2019. Available at http://allh.us/p4NE.
“HCAHPS: Patients’ Perspectives of Care Survey.” Center for Medicare and Medicaid Services. December 21, 2017. Available at http://allh.us/m67A.
“Measuring Quality for Person-Centered Accountable Care.” Event. Alliance for Health Policy. October 12, 2017. Available at http://allh.us/cEdY.
“Measurement of the Patient Experience: Clarifying Facts, Myths, and Approaches.” Tefera, L., Lehrman, W., and Conway, P. May 31, 2016. JAMA Network. Available at http://allh.us/anYR.
“Measuring the Patient Experience: Lessons from Other Industries.” Carrus, B., Cordina, J., Gretz, W., et al. McKinsey & Company. August 2015. Available at http://allh.us/qetH.
“How Does Patient Experience Fit Into the Overall Healthcare Picture?” Luxford, K. and Sutton, S. Patient Experience Journal. April 2014. Available at http://allh.us/pm6D.
Additional Resources (listed chronologically, beginning with the most recent)
“Modernizing CAHPS: The Time Has Come.” Quality Reviews (blog). July 19, 2019. Available at http://allh.us/fKnb.
“It’s Time to Modernize HCAHPS Around Experiences.” Haufe, S. Qualtrics (blog). July 9, 2019. Available at http://allh.us/4Gtr.
“Linking Practice Adoption of Patient Engagement Strategies and Relational Coordination to Patient-Reported Outcomes in Accountable Care Organizations.” Rodriguez, H., Ying Poon, B., Wang, E., et al. The Milbank Quarterly. June, 2019. Available at http://allh.us/Av4N.
“How is Patient Involvement Measured in Patient Centeredness Scales for Health Professionals? A Systematic Review of their Measurement Properties and Content.” Ree, E., Wiig, S., Manser, T., et al. BMC Health Services Research. January 8, 2019. Available at http://allh.us/DacQ.
“Health Care in America: The Experience of People with Serious Illness.” Schneider, E., Abrams, M., Shah, A., et al. The Commonwealth Fund. October, 2018. Available at http://allh.us/DBNV.
“Patient Experience in Primary Care: A Systematic Review of CG-CAHPS Surveys.” Holt, J. Journal of Patient Experience. August 12, 2018. Available at http://allh.us/mJVf.
“The Unexpested Impact of Patient Experience on Hospital Margins.” Greenberg, B., Goldman, J., and Pesesky, M. The Bridge (blog). Advisory Board. February 2, 2018. Available at http://allh.us/NagB.
“CMS HCAHPS Patient Experience Star Rating.” Advisory Board. 2018. Available at http://allh.us/HNwp.
“Value-Based Purchasing: Four Need-to-Know Domains for 2018.” Brown, B. Health Catalyst. 2018. Available at http://allh.us/TeUa.
“Adding Individual Insights to the Patient Experience Toolkit.” Rosen, P. NEJM Catalyst. October 12, 2017. Available at http://allh.us/rMfG.
“The Top Five Recommendations for Improving the Patient Experience.” Merkley, K., and Bickmore, A. Health Catalyst. 2017. Available at http://allh.us/MWGA.
“The Value of Patient Experience: Hospitals with Better Patient-Reported Experience Perform Better Financially.” Deloitte. 2016. Available at http://allh.us/X3Ar.
“Accelerating Improvement and Narrowing Gaps: Trends in Patients’ Experiences with Hospital Care Reflected in HCAHPS Public Reporting.” Elliot, M., Cohea, C., Lehrman, W., et al. Health Services Research. December 2015. Available at http://allh.us/9fqD.
“Patient Satisfaction Reporting and Its Implication for Patient Care.” Mehta, S. AMA Journal of Ethics. July 2015. Available at http://allh.us/dQPk.
“Evaluation and Measurement of Patient Experience.” Lavela, S. and Gallan, A. Patient Experience Journal. 2014. Available at http://allh.us/mdvw.
“Centered Around You – Hennepin County Medical Center.” Video. HennepinHealthcare. April 16, 2013. Available at http://allh.us/wGQu.
|National Quality Forum, President and Chief Executive Officer|
|Sheila Delaney Moroney
|Hennepin Healthcare, Patient Experience Officer and Senior Director of Person-Centered Care Programs and Services|
|Denise Durgin Maloney||Back Bay Leadership, Executive Coach; The Beryl Institute, Co-Chair of the Global Patient and Family Advisory Board|
|Public Opinion Strategies, Partner and Co-Founder|
|Yale School of Medicine, Gladys Philips Crofoot Professor of Medicine and Public Health and Chief of Geriatrics|
Experts and Analysts
|The John A. Hartford Foundation, Senior Program Officer|
|Beth Darnall||Stanford University School of Medicine Department of Anesthesiology, Associate Professor of Perioperative and Pain Medicine; appliedVR, Chief Science Officer|
|Amy Djangali||IMPAQ International, Senior Research Associate|
|Marc Elliott||RAND Corporation, Senior Principal Researcher and Distinguished Chair in Statistics|
|Nelly Ganesan||Senior Healthcare Consultant, Avalere Health
|Susan Haufe||Qualtrics, Healthcare Category Leader|
|Judith Hibbard||University of Oregon Institute for Policy Research and Innovation, Professor Emerita and Faculty Fellow|
|Ann Hwang||Community Catalyst, Director, Center for Consumer Engagement in Health Innovation
|Debra Ness||National Partnership for Women & Families, President|
|Margaret O’Kane||National Committee for Quality Assurance, Founder and President|
|Leslie Pelton||Institute for Healthcare Improvement, Director of Age-Friendly Health Systems Initiative|
|National Health Council, Senior Vice President of Strategic Initiatives
|Eugene Rich||Mathematica Policy Research, Senior Fellow
|Karen A. Robinson||Johns Hopkins Evidence-based Practice Center, Director|
|Dana Safran||Haven, Head of Measurement|
|Jason Wolf||The Beryl Institute, President and Chief Executive Officer|
|Arlene Bierman||Agency for Healthcare Research and Quality, Director of the Center for Evidence and Practice Improvement
|Kate Goodrich||Centers for Medicare & Medicaid Services, Chief Medical Officer and Director of the Center for Clinical Standards and Quality
|Paul Rosen||Centers for Medicare & Medicaid Services, Medical Officer for the Transforming Clinical Practice Initiative|
|G. Lawrence Atkins||Long-Term Quality Alliance, Research Director
|Bruce Chernof||The SCAN Foundation, President and CEO|
|Lynn Friss Feinberg||AARP Public Policy Institute, Senior Strategic Policy Advisor
|Chip Kahn||Federation of American Hospitals, President and Chief Executive Officer
|Rebecca Kirch||National Patient Advocate Foundation, Executive Vice President of Healthcare Quality and Value
|Rick Pollack||American Hospital Association, President and Chief Executive Officer|
|Mat Reidhead||Missouri Hospital Association, Vice President of Research and Analytics|
|Lori Shoaf||Blue Cross Blue Shield Association, Managing Director of Federal Relations|
|Edward Shin||Quality Reviews, Chief Executive Officer|
|Todd Unger||American Medical Association, Senior Vice President and Chief Experience Officer|
SARAH DASH: … an understanding of health policy issues, we are not advocates, ourselves, for any policy or regulatory solutions, but we do serve as a resource for the policy community.
Today’s briefing is on the record for those of you who are in the press, and you can join on Twitter with the hashtag AllHealthLive.
So let me just ask. Raise your hand if you have been in the hospital, like ever, other than your birthday. All right. Keep your hand raised if a loved one of yours has been in the hospital. Thank you. So, I think it’s clear, like no matter how much you think you know about healthcare or know about healthcare, I think when you view it from the lens of the patient it’s a very different experience, so we’re really happy to be here to talk about how we measure patient experience. We’re going to focus on the Hospital Consumer Assessment of healthcare providers and systems, or HCAP Survey, today and I’m going to get into the details in a little bit. But before we hear from our panelists—we have a fantastic expert panel today—I would like to thank the Federation of American Hospitals for making this event possible. I’m going to introduce Chip Khan, who is President and CEO, as many of you know, of the Federation to share some opening remarks. So, thank you, Chip.
CHIP KHAN: Thank you so much, Sarah, and welcome to everyone. As she said, I’m Chip Khan, President, and CEO of the Federation of American Hospitals. First, I want to start by thanking the Alliance for Health Policy, Sarah and her wonderful team, for conducting this vitally important event. The Federation is proud to sponsor this session and I’m honored to have the opportunity to open up today.
Second, I cannot overstate the critical significance of our topic: the hospital-patient experience and the primary tool for measuring that experience. The Hospital Consumer Assessment of Healthcare Providers and Systems, known as HCAPS is critical. The HCAPS survey serves government and hospitals alike to measure and assess the hospital’s patient experience for millions of hospital admissions.
The HCAPS survey is part of a critical path enabling hospitals to improve care, to be held accountable for how it treats its patients, and to provide a window of transparency for all to see the hospital from the patient’s view. That is why the deep dive we will take in the next few minutes will be so meaningful in expanding our understanding of the patient experience and discussing needed next steps for the survey we use to assess that experience.
Last week, the Federation, with our collaborators from other major hospital organizations, released a study entitled “Modernizing the HCAP Survey: Recommendations from Patient Experience Leaders.” It’s in your packet. I believe the study findings help set the stage for today’s discussion. Our study included interviews with hospital Patient Experience Leaders or PELs. These are individuals on the front lines of HCAPS at hospitals and health systems across the nation. They are the ones who translate HCAPS results into action for hospitals and health systems. The findings of our research are eye-opening, but would the recommendations we made actually work despite the best ideas? Were they practical?
To test our conclusions, the Federation teamed up with Bill McInturff and his team at Public Opinion Strategies to find out. They revamped the HCAP Survey with the guidance of the PELs and focus group-like testing of hospital patients, and tested the new survey in HCAPS online. The results of this real-world demonstration will be unveiled for the first time here in the next few moments. Not to scoop Bill, but I paid for the survey, so I will; [Laughter] you will hear that he found a reason to eliminate a few of the HCAPS questions, reworded others, and created a few new ones to reflect the evolution of hospital- and patient-centered care.
The goal was simple: to see if we could better measure the patient experience while at the same time increasing survey response rates. We think we can say from the demonstration that adding an online option to the other modalities for administering HCAPS will, and should, foster better response rates. We know that CMS is already aiming in this direction and we hope they will work fast.
The detailed results that Bill will outline are exciting and enlightening. Now, during this briefing, you’re going to hear about how the patient experience is critical to effective patient care. Some will even talk about how we need to move beyond the measurement of patient experience toward a focus on patient-reported outcomes.
In conclusion, from my view and our efforts with our sister hospital organizations and Bill’s work, there are six takeaways that I hope you will take away from today’s session. Number 1: HCAPS is critically important to care improvement, accountability, and transparency. Number 2: It works, but like anything else, it needs a refresh. Hospital care has clearly evolved and changed over the past decade as has the patient experience in this evolving caregiving environment. HCAPS needs to evolve, too. Number 3: HCAPS can work better across today’s continuum of hospital care to address care transitions and post-discharge experiences, efficiency and teamwork of the care team, and fulfillment and comprehension of the patient’s care plan, among other things. Number 4: We know that a patient’s socioeconomic circumstances can impact the effectiveness of care. HCAPS aimed to capture critical information that contributes to a greater understanding of social determinants of health and healthcare effectiveness. The current HCAPS can do more to move forward this goal. Number 5: Despite much effort over the years, the HCAP Survey questions often do not sufficiently match the healthcare literacy level of some English-speakers, and is much less fit for many who speak other languages. HCAPS questions need to be recalibrated to be more broadly understandable. And finally, it’s time to move HCAPS online. Response rates are dropping from 33 percent in 2008 overall to 26 percent in 2017. Eventually, this will impact the validity of HCAPS. We need to make sure we solve this problem. No one is suggesting we move beyond the phone or mail, but it’s time to join the second decade of the 21st century with HCAPS.
So finally, if you want to know more about our study and Bill’s demonstration beyond the discussion today, you can go to FAH.org and we have two Hospital-in-Focus podcasts for deeper, deeper dives. So, with that, on to the panel.
SARAH DASH: Great. Thank you so much, Chip. All right. Well, with that, let’s get to our panel. I’m so excited to have everybody here. First, I’m going to introduce them down the row here. I’m delighted to introduce Dr. Mary Tinetti. Dr. Tinetti is the Gladys Phillips Crofoot Professor of Medicine and Public Health and the Chief of Geriatrics at the Yale School of Medicine. Dr. Tinetti leads a national effort to develop and test an approach to healthcare decision making that focuses on the individual priorities of older adults with multiple chronic conditions.
Next, we’ll also hear from a doctor, Dr. Shantanu Agrawal, who is President and CEO of the National Quality Forum. Dr. Agrawal is a Board-certified emergency medicine physician and former Deputy Administrator for CMS where he leads, or sorry, he led the Center for Program Integrity. That would be a lot to still do both of those jobs.
Next, we will hear from Bill McInturff, who is co-founder and managing partner of Public Opinion Strategies, one of the nation’s largest political and public affairs survey research firms. Today, he will describe his work developing and testing a redesigned HCAPS survey.
We’ll then hear from Sheila Delaney Moroney. Sheila is the Patient Experience Officer and Senior Director of Person-centered Programs and Services at Hennepin Healthcare in Minneapolis. She’s a frequent national speaker, a founding member of the Patient Experience Policy Forum, and a Board member for the Patient Revolution.
And then, we are really pleased to give the final word, who is going to be the judge of everything we say today, to a patient and advocate. Denise Durgin Maloney is Co-chair of the Beryl Institute’s Global Patient and Family Advisory Board, as well as an executive coach for Back Bay Leadership. After being diagnosed and treated for breast cancer in 2018, Denise launched an educational website to help breast cancer patients learn more about their cancer treatment. Denise will discuss the importance of integrating the patient experience into care delivery.
So, I will now turn it over to Dr. Tinetti. Just push your mike to talk.
- MARY TINETTI: Well, thank you. It’s very wonderful to be here and I’m going to talk from the perspective of a clinician who, for over 30 years, has been taking care of people in the hospital, primarily older adults with multiple chronic conditions who probably occupy at least six out of ten beds today in every single hospital, so they are the key constituents. And I’m going to talk to you about why we need to expand beyond the current definition of patient experience.
And as I sort of looked at what’s currently in the HCAPS, it reminded me if I went to a restaurant and they asked me, “Well, was the atmosphere nice? Was it too noisy? Were the waitresses nice to you,” but they didn’t ask you what you wanted for dinner or whether you got what you asked for – so that’s going to be my take-home message for you. We want to know what’s for dinner and that we got it.
So, I’m going to start with a few definitions. You don’t have to remember any of these, but I think it’s important to know what it is that people are looking for for their healthcare. The health outcome goals are the actionable and reliable life outcomes that people want as a result of going into the hospital or getting any type of healthcare. They go not because they want to have their joint replaced or they don’t go because they want people to be nice to them, they go because they want to be pain-free enough that they can get to their child’s graduation or whatever.
The other thing that’s important is their healthcare preferences. One of the wonderful things about modern medicine is there’s just more and more that we can do to people and for people. The bad thing about modern medicine is there’s more and more that we can do and do do, so it’s really important to know whether it’s medications, procedures, hospitalizations, that we know what people want from their healthcare. And putting those together are the priorities. It’s the outcomes that people want given the healthcare that they’re willing and able to do and, very simply, that should be defining healthcare in the 21st century.
So I’m going to start very, very briefly with a typical patient who is in a hospital throughout America today. Mr. A., 78 years old, has heart failure, the most common reason for hospitalization among adults, depression, diabetes, hypertension, and probably about five to ten other conditions. He gets state-of-the-art care from everyone. His cardiologist recommends he starts a beta-blocker, which is a heart drug that’s recommended, and in the hospital, if you’ve had a heart attack, you get measured whether or not someone got started on a beta-blocker. Also, taken care of by a psychiatrist for his depression. Beta-blockers, guess what? They worsen depression, so he or she gets measured on whether she stopped that beta-blocker which was worsening his depression. Primary care gets measured on blood pressure and hemoglobin A1C, which are measures for hypertension and diabetes, means that you throw in more and more medications and more and more things at people, which cause fatigue which is very often what Mr. A. complains of. And so, as a result, he gets an awful lot of healthcare but it’s not clear that it’s what he really wants. And, when he’s in the hospital, his hospital gets measured, and he gets readmitted back to the hospital, and so he gets in the whirl of whether a person is actually admitted to the hospital or whether they’re considered an out-patient sitting in the hospital observation. And if you don’t know the difference of observation versus admission and what kind of chaos that’s caused in our health system, just ask anybody involved in hospital care.
So this care, as for Mr. A. like a lot of people, is very burdensome. People spend one-tenth of their life, 330 days if you’ve got more than one condition, somehow touching the healthcare system, things that they’re not doing elsewhere. This is of uncertain benefit because, in this population, they’re not part of the clinical trials that give us evidence and how do you even define what’s the best outcome when somebody has multiple competing conditions all at the same time? But even more important is that we know that people with multiple conditions, which again, is the major users of healthcare in this country, they vary in what matters most to them. You may care about your function. You may care that you get to your soccer game tonight, whereas you may care most that I get rid of this pain. Somebody else wants to make sure that they live long enough to get to their grandchild’s wedding. Everybody varies in the outcomes they want and what they’re willing and able to do. And this is not just a problem of older adults. And it’s probably hard to see this slide, but the take-home messages of all older adults, the vast majority of people who touch the healthcare system have multiple conditions. So it is the health issue of the 21st century.
So it’s easy to say, then, why health priority should be the core patient experience measure. People vary in what they want. Disease-specific metrics and event metrics don’t count what really matters most to people. It’s really, we talked about being patient-centered. How can you be patient-centered if you don’t really know what matters most to the individuals? And I’m going to say, it’s also the best way to improve value because if you think about what value is, it’s the outcomes you want over the inputs that go in. So if the outcomes for what you’re willing and able to do, it works at the patient level and it works at the hospital level and it works at a societal level.
I’ll give you a couple of very quick examples of where this is playing out to show that, yes, it is feasible. In the work that we’re doing, Patient Priorities Care, it’s very simple. How to do it is more complicated in the disorganization of current healthcare, but very simple. You identify what people want from their healthcare, the outcomes they want, and what they’re willing and able to do that gets transmitted to everybody. Everybody who touches that individual will decide whether to start or stop care based on whether it’s consistent with the health priorities. This gets communicated and all care gets aligned. I mean, who can be against that? Is anybody against doing that? Okay. Thank you. I’d kind of like to meet you if you are.
Obviously, the key is how to do it, right? And these are some examples. I mean, people always worry that people are going to ask for something that is really not doable. I always say, “My life priority is to run a marathon. My preference in exercise is not to have to exercise to do it.” But most of us are a lot like that. When we get to our healthcare, they ask for really very reasonable things. I want to be able to work a half-a-day in the office and all my healthcare visits keep me from doing that. I want to be able to babysit and I have too much pain to do that. Really logical and achievable things. Again, some people feel safer in the hospital. I know there’s all push about keeping people in the hospital, but a lot of my patients, when they get short of breath, that’s where they feel safest. Or, I’m walking and I can do the exercises. Things people think they can do and things that they find just too hard to do. Their medications. Too many tests. Too many “I don’t really want back surgery. I have pain. Can you give me some alternative?” People are able to say, if you ask them in a reliable way, what they want, what they don’t want and they’re realistic in how it can help them or not help them get the outcomes that matter most.
And so, does it work, and does it make a difference? So in work that we just finished recently in Connecticut, but also a very similar study in Houston with another group of our colleagues, we did find that if you really train clinicians and patients to be on the same page, really did have good documentation, people were able to document that they had thought about the patient’s priorities in all the decision making that they made. This occurred in an outpatient ambulatory setting, but very doable in the hospital as well. And, most importantly, it resulted in less unwanted care, and that’s the key. We’re not keeping wanted care or necessary care. This is care that people specifically said they did not want. Twice as many medications were stopped, and you’re talking about a population that takes ten medications. Nobody thinks ten medications in combination is a good thing. Well, maybe some of you do, but we’ll talk about that. They got fewer tests that they did not want and a few self-management tasks were added onto them. And, again, people have shown that caring for their chronic conditions has become more burdensome than the chronic conditions themselves, and that’s something we’re trying to alleviate. And so there was a perception of a decrease in the treatment burden and good outcomes otherwise.
Another example is the Age-Friendly Health System which is co-sponsored by the John A. Hartford Foundation, the Institute for Healthcare Improvement, which is one of the major healthcare improvement quality improvement organizations in the country and in the world, the Catholic Hospital Association, and the American Hospital Association, and their goal is a very simple one, that 20 percent of healthcare organizations and hospitals in this country will be age-friendly by 2020, which is only a couple of months away unfortunately. They’re doing this for this framework, the 4M’s and one of the 4M’s is What Matters Most? So their key is, you cannot be age-friendly if you don’t know what people want from their healthcare. This is where the current healthcare systems already are who have joined that age-friendly health system initiative, and every day more and more people are doing it. And they have actually kind of cracked the code. There are ways that we can ask about what matters, both in the hospital setting and an ambulatory setting, and these are just two examples that you have in your slide. So it’s hard to do, but we’re finding ways to do it.
And this is an example of one of their organizations where they went from zero percent of people were asked or had their goals ascertained to 60 percent, just by training people and just by making it part of what they did. So it’s not easy, but it’s feasible and it’s doable, and in advanced care planning in older adults, also been shown to be effective.
So I’m going to leave it with what we’re doing currently in the area of what people want. Remember, going to the restaurant, being asked about the noise but not being asked what you want to eat. In the hospital, we’re not asking what it is that matters most to that individual. We’re walking around it. All the other things that are in the HCAPS are very important, but the most crucial one is not there. There have been starts in doing it in the ambulatory setting, in patient-centered medical homes, which some of you may be familiar with and I can explain to you if not, but there are some beginnings of questions that have been identified to look at in some of those areas.
And so, finally, I think that there are many, many benefits of identifying what outcomes people want and what they’re willing and able to do to achieve them. It’s really probably the best way to get true value if we’re really moving toward a value-based system because it does both the outcomes as well as the inputs, but also there are major challenges. We don’t know very well how to measure it in a way that can’t be gamed or checklist adherence, but there are a lot of very smart minds in this country that will work on this area and I challenge them to take this one on. Thank you.
SARAH DASH: Thank you so much, Mary.
All right. Thank you so much, Mary, for that overview of how asking what matters to patients can relate to their outcomes. We’re next going to hear from a Shantanu who will tell us more about the HCAP Survey in context and give us more detail about that. Thanks, Shantanu.
SHANTANU AGRAWAL: Great. Thank you, and I just want to start by thanking Sarah and the Alliance for the opportunity to come and speak with you all. I think Dr. Tinetti set up exactly the right context for the discussion and so what I’m going to do in my section is really three things. I’m going to describe to you the CAP surveys in a little bit more detail so that all of you have context about that if you don’t already. I’ll talk to you about the role that my organization, the National Quality Forum, plays in the development process around the CAP surveys, and then, finally, what we or I view as challenges and future directions for the various CAP surveys.
All right. So, I think Dr. Tinetti covered this really well. You know, essentially the basic notion around patient-centered measurement is asking what would be different in healthcare if we really understood the preferences, values, needs of the patients actually getting that care. And I think there are lots of different ways of approaching that. Towards the end, I’ll come back to a few other ideas, but I think certainly the CAP surveys are trying to get specifically at this question.
The CAP surveys are actually a set of surveys, so there are 15 separate surveys that are essentially segmented by the care setting in which they’re meant to be used. All of them are comprised of performance measures. I’ll show you an example of the HCAP Survey in a couple of slides. And we get involved at NQF by assessing the performance measures that underlie the surveys and either endorsing them, which is a term of art for us, that you can basically think of that as certifying measures, so we do this through a very multi-stakeholder process. Each of the performance measures in the CAP surveys is reviewed by multi-stakeholder committees. They are bumped up against several scientific criteria that we have established and iterated on over the last several years, and then there’s a determination made about whether we will endorse the measures. So we have actually endorsed nine of the 15 surveys and, again, I’ll show you where.
And, I think, just to build on what Dr. Tinetti said, the domains that are actually measured in the CAP surveys, though they could clearly be improved, we think hold lots of different benefits for patients, hospitals, and other stakeholders in the healthcare ecosystem. First, they are really important for capturing patient preferences, their needs, their values, et cetera. They have become an increasingly integral part of healthcare quality delivery and making sure that that delivery is person-centered. They encompass a wide range of interactions and, again, you’ll see that in the CAP surveys. And, you know, the CAP surveys are actually great because they assess not just patient satisfaction. I think there is a misunderstanding sometimes in the community in the ecosystem that we’re just asking people to rate their satisfaction the way we would on Yelp or something like that. More than that, actually, the CAP surveys are really trying to get patients to assess various aspects of the care that they got, so how well did a doctor and/or nurse communicate with you? How well were you communicated with at the time of discharge? Even assessing things like care coordination. That is, I think, what underlies the CAP surveys and really makes it more of an experience-based survey, not just a perception or satisfaction survey.
These are the current CAP surveys that have been developed, again, largely breaking down by care setting, and I just starred the ones that currently hold NQF endorsement. The other ones either have not come through the endorsement process yet or, for some reason, did not manage to get endorsed even when they did.
Let’s talk a little bit about HCAPS. I think that’s probably the CAP survey that people know best. So this CAP survey is focused on the hospital setting. There are actually two different surveys; one for adults and one for children. The broad goals, you can see, are very commensurate with CAP surveys overall, but this is meant to provide an objective standard of topics that are important to patients, so this is meant for objective comparison between hospitals and, within hospitals, it’s publicly reported and it is meant to enhance accountability as well.
So it’s used in a variety of public programs at this point and I’ll show you the timeline in another slide or two about how it’s gotten incorporated over the years. The HCAP Survey is part of the Hospital Compare site and, again, it allows literally for a comparison between hospitals. It’s part of various pay-for-value programs, including Hospital VBP, and it’s also part of public transparency programs like the Stars Program.
The contents and administration of this survey, so it’s a 32-item survey. There is actually a set of core questions, 21 questions, some of which, you know, will come together in more composite measures. So there are basically seven summary or composite measures that utilize two or more survey questions. There have been two individual items, I think one, for example, focused on patient – on the room cleanliness, not patient cleanliness, room cleanliness. And then there are two global items, so what is your overall rating of the hospital and would you recommend the hospital to, I think it’s a friend or a family member.
The administration, it is a random sample of adult in-patients that is provided 48 hours to up to six weeks after the hospitalization. That time period is actually really important, so if you look at patient experience survey research, of course, the further out you get from the hospitalization the less accurate the patient experience reflection can be. You certainly introduce different kinds of recall bias at that point, so that cutoff of trying to keep it as close to the hospitalization as possible is very important. And then there are different modalities that are used to actually administer and collect this data so you can do it through, and you heard a little bit about this in the introduction from Chip, it’s collected through mail, through telephone, through a mix of both, and then there is actually a virtual response system as well that you can dial into to provide your responses. And then, multiple languages are available.
So here is the overall timeline that HCAPS has undertaken in order to be adopted. So initial development between the Centers for Medicare and Medicaid Services and ARC actually started in 2002. The first round of endorsement actually occurred in 2005 for HCAPS. It was then implemented in ’06 and there was the first public reporting of the performance data in ’08. And then there have been two major updates since then: an overall update to the CAP survey in ’13, and then, I think importantly, there were pain management questions, I believe two of them that were addressed in 2018, that really evolved from being pain management to communication around pain issues, and that was done for a variety of reasons. And we actually expect the majority of CAP surveys to come back into our endorsement process this year for reassessment.
Summary data. Over 4300 hospitals now have publicly reported HCAP scores. Over the years, this has gone from essentially pay for reporting to now pay for performance in the HCAPS world. Over three million surveys have been completed and there are about 8500 patient surveys that get completed every day. So it is an extremely high-volume program that CMS administers and with a lot of data that has been coming as a result.
That’s just hopefully useful grounding in what the CAP surveys are and what HCAPS is in particular. I thought I would spend a couple of minutes just talking about what I view as current challenges and then potentially some future action items. And I position this as HCAPS since we are doing a deep dive on that, but I do think a lot of these really apply to CAP surveys generally.
First, there is a fair amount of burden attached to data collection. Patients are increasingly being surveyed, both by CAP surveys and other surveys, so most hospitals, and I’m an emergency medicine physician, every hospital I’ve worked in administers their own surveys that augment CAPS, that include those CAPS questions but go much further. There is a fair amount of surveying that goes on and a lot of hospitals actually are not only assessing survey results at the hospital level, but they are really trying to do enough surveys to drill down to the individual clinician level about clinician performance. So it is time-intensive, very resource-intensive, and patients end up getting a lot of potentially disparate surveys. It’s also quite expensive to administer.
On the data side, there are basic questions around who the data source is, whether patients themselves are responding to these kinds of surveys or it’s occurring through proxy caregivers. Obviously, that becomes a major issue when you think about pediatric surveys. The mode of administration I think is an extremely important challenge, so, as I mentioned, there are a lot of different modes that are currently utilized. Nothing quite online yet. I think that does account for the low response rate, so I thought the latest number was right in the 26 to 27 percent range for HCAPS, but I do think that starts the question how comprehensive and representative these surveys are being of the potential patient cohort. There is some selection bias that I think can also result when you get under a third of people responding to these surveys. You have to ask, so is there anything special about the third that are responding? And then there are missing data and exclusion issues as well, so there are people that, either by design or just by the say the survey is administered, are actually not part of the survey population and that can be quite problematic.
I think two challenges definitely worth talking about, first is how much are we capturing data about individual populations, those populations that might be at higher risk for various healthcare disparities, health equity issues. Again, with a third of the population, potential population being surveyed, are we capturing enough critical data on populations of particular interest or concern. That’s number 1. Number 2, patient expectations, I think, do clearly play into this. Again, there is a good amount of data that you can find that shows that a person’s expectations going into the hospitalization, going into a survey can actually have a strong outcome on what they report in the survey. I think it’s important to better understand that through research and be able to adjust surveys then as appropriate.
And, finally, you know, I think there is a basic question around how patient experience measurement compares to clinical outcome measurement. So are these things co-related, are they not? I think right now the data is a little bit mixed on that. Probably the long and short of it is, is that if you ask patients their experiences tied to specific clinical interventions or events like a particular hospitalization and you ask them about aspects of that care that they really can’t assess and experience directly, that actually has been shown to correlate pretty well with other clinical outcome measures. Where you move away from that, either the time of survey is very delayed, or you ask the more generic questions, or you ask them about a whole set of care interactions and not a specified set that the correlation with clinical outcomes can really start to drop off. But that’s an important topic and I think points to some future issues in measurement.
And the last thing I’ll just touch on very quickly is that patient experience measures are really one aspect of what could be measured from patient-reported domains. So there are four different things that can be measured. Experience with care is just one of those things, but you can also assess things like health-related quality of life, symptoms and symptom burden, healthy behaviors. Those are all different kinds of measures and I think, you know, therefore any kind of CAPS approach or patient experience approach really needs to fit inside a larger measurement approach that engages patients, particularly patient-reported outcomes that I think are the holy grail for measurement in many ways.
So we’re doing a lot of work along these lines at NQF. We do have a patient-reported outcome committee that is actively being convened. You can submit nominations, if you’re interested, by the end of this month. We will be looking to assess current challenges in PRO selection and how to improve PRO data quality, and I’ll let you read the rest just because I’m over on time in terms of the other things that we’re actively engaged in.
So thank you again for the opportunity.
BILL McINTURFF: Hi, I’m Bill McInturff with Public Opinion Strategies. Just to give you a little overview of what we did, Chip did a very good job introducing it. The challenge that my friends at FAH gave was: can we do something that demonstrates that are qualities and measures that are missing in HCAPS that would do a better and stronger job, that would measure the overall patient experience?
So to do that, we first spent an hour. We had a woman moderator. A male moderator did one-on-one interviews with 16 patients. We were informed by Dr. Salsberg’s work, that Chip mentioned, they had interviewed Sheila and her counterparts around the country, patient experts, about what they thought were the strongest ways to determine patient satisfaction. And then we did a lot of open-end probes about their own experience first, and then we kind of tested. Some of the measures we heard from Dr. Salsberg’s work to see if, in fact, those resonated with patients. Then we designed a new survey where we took as much of HCAPS as we could, but we rewrote a series of new questions based on the FAH work with patient outcome experts and with the one-on-one interviews and then, from that survey, we looked at which questions were the most predictive of, which the doctor mentioned, overall satisfaction and recommendation to a friend or family member. And then we did sort of a final test. We took the exact HCAP survey online and then we wrote a modestly new survey that had edits and changes so we could compare the two instruments.
So what did we find? One, 87 percent of Americans, according to the U.S. Census, all are on a computer, laptop, or smartphone. And the age CAPS existing survey worked really well online and so one of the things, as Chip mentioned, is this work would demonstrate that the very thoughtful work that CMS does should be done because we believe, and we think that the work demonstrates that response rates could go up and that there is a very successful way that this survey could be administered online.
What it also did was we also found some additional areas that look like areas that could be further explored. One was stronger measures about the confidence in their doctors and nurses, and then this notion about patients wanting to feel that they’ve been heard and they had input in their own care. This was really central to what people described, and I think it reflects Dr. Tinetti’s work about people wanting their own outcomes being respected. And then, efficiency and care, on the team-based care. Team-based care means not just my physician, not just the nurse, not just – but it’s the entire kind of coordination of whether or not the care that I have received was administered in a way that was on time, that people told me what was happening, and that that was delivered.
And then, the other thing is, we heard a lot about admission and discharge and we think, from what we’ve heard and the additional questions that we’ve asked, that especially on admission and discharge, that those questions could be strengthened in the HCAP Survey. Not surprisingly, like any consumer experience, there is sort of a check-in process when we first have our first reaction as a consumer, and then we have our last reaction. And I think that, and what I’ve said to the FAH client and hospitals is, from this data, I would spend a lot more time trying to clean up the discharge process in terms of meeting consumer expectations.
But I do want to say, again, from a public policy standing, the HCAP Survey is a very strong, very well-crafted, and a very strong way to evaluate hospitals. I’ve worked with CMS in the past. Their market research and survey research department is very strong and, when you do research, you do various statistical models to say: is this questionnaire successful in measuring overall satisfaction; is it successful in measuring would I recommend to my friends, and by any research survey standard, HCAPS is well above those normal measurements.
So, number 1, I want to make sure that whatever we’re doing here, and we talked about modernizing, strengthening, improving that we’re being very clear how good and strong this current survey is. But the new items that we wrote, the seven or eight items that we wrote ranked higher than the existing items they replaced, and, as a consequence of that, and when you see that, is they also were more likely to capture what people said was their experience in the hospital.
Now, overall, we had very successful results. Number 1, it reduced the number of experience questions from 20 to 18, so a thing I was concerned about when we started this work was, hey, if you have a great survey and you’re missing something, it’s an addition, that we can’t make the survey longer. And so, in fact, what we found was, we were able to administer a different questionnaire that was shorter. It took 8.5 minutes. That was statistically significant; 1.3 minutes less than the existing HCAP Survey was, and important, as the doctor mentioned, hospitals are adding questions on this document. So if you can knock out a minute, minute-and-a-half, it increases response rates because you didn’t add other questions. And then, the other thing that happened is, using those same statistical models, as I said, we were able to create a different, smaller, shorter, slightly shorter survey that was even higher in terms of measuring overall and predicting overall satisfaction recommendation.
So what were some of the questions, not all of them, but some of the ones that worked well in terms of measuring overall satisfaction? During this hospital stay, how often did doctors, nurses, and staff work together to provide you time and efficient care? Again, one of the things people tell us is they are measuring the overall system, not just nurse, not just physician, but was there a coordination across care that worked. This turned out to be actually the single biggest predictor of overall satisfaction. During the hospital stay, how often did you receive accurate updates about the timing or any delays in your care plan? People don’t expect, you know, Swiss-trained perfection. They know there are gaps. They just want to be told if something is going to be changed or off schedule. During the hospital stay, how often did you understand your care plan clearly? And then, another item that we found was, again, Dr. Tinetti mentioned these older patients are taking ten medications a day. They walk in, and what we heard was, “I’m really worried. I have a lot of existing medication. Does my hospital stay either explain to me why I can’t take it, or keep that medication in its current way? And that question actually worked quite well. And then, again, this is a rewrite of an HCAP standard on an agree/disagree scale: When I left the hospital, I fully understood the purpose of taking each of my medications. That language worked just slightly better.
So what was our objective? Our objective is if you administer the current-age CAPS and then you take a slightly revised version from the work we did how did that slightly revised version do? So, number 1, on already very high scores of satisfaction and prediction, the new survey was statistically stronger in both predicting overall satisfaction and recommendation, and the new questions, there were 13 questions that had correlation scores over 50, there were 7 of those over 50 in the existing HCAPS, meaning that we believe that these modest rewrites and these new additions were, in fact, adding to our knowledge about how to measure satisfaction.
So I told you I’d mess up the technology. I promised my fellow panelists I would and I did. I met my promise. So the next one was, again, that importantly, we’re trying to demonstrate that we can demonstrate a survey that did better. So I think I’m just missing my conclusion slide. So just in conclusion, number 1, we really want to strongly encourage our friends at CMS to consider adding an online platform. We think that we’ve demonstrated ways to measure overall satisfaction with care that is stronger by measuring: was I listened to; was I heard; did they coordinate my care? And that the sufficiency of care can be measured more correctly and accurate; and, finally, that there are questions about the admission and the discharge process that we think can be strengthened.
But, all in all, again, we want to both recognize the existing strength of the HCAP Survey and then say, like any other document that’s 10 or 12 or 14 years old, that as consumers shift and change, the survey can shift and change and there are ways that all of this work would give a guidance and a structure for very, very talented research at CMS and others to begin to reexplore how to strengthen and further improve the Survey. Thank you.
SARAH DASH: Thank you. Thanks, Bill, and for those following in packet, the conclusion slide is printed in your packet and it will be online, so sorry about that, Bill. But, Sheila, how does all this work in practice?
SHEILA DELANEY MORONEY: Well, thank you, everybody, for having me here today and especially thanks to the Alliance for hosting this very important discussion.
I am speaking today as one leader. I don’t represent any special interest group or association of hospitals, but I do want to start off by saying I endorse everything that was just said. [Laughter] So, I hope I’m not redundant, but only to affirm a lot of the wonderful ideas that have already been shared with you.
I also want to say that my remarks are in the context of gratitude. I am particularly grateful to CMS, to ARC, to NQF, to the CAPS Consortium for all the years of expertise and thought they’ve put into developing this very effective tool, and also their willingness to entertain a wave of feedback, an unrelenting wave of feedback about how this can be better.
I also want to express my gratitude to the millions of patients who have filled out the survey. You saw an incredible amount of activity. Patients taking the time to tell us what they think about their care has been invaluable to us as we try and figure out what to do next and how to do it better.
So I’m first going to give you a quick view of where I work. I am at Hennepin Healthcare in Minneapolis. I am the Patient Experience Officer where I’ve been for 12 years. We are a pretty typical large, level 1 trauma center. We are one of America’s essential hospitals, serving a hugely diverse patient population. Our patients come from many countries. They speak many, many languages. They have life stories that range from privileged to trauma-informed and everything in between. We provide critical care, ambulatory care, inpatient care across the continuum and most notable is our payer mix is about 65 percent government-funded and with a preponderance in Medicaid, so that’s a pretty – for safety net hospitals or America’s essential hospitals, that’s a pretty common quotient but is unusual when you look at the whole realm of hospitals nationwide.
That makes it very complicated because our patients have very complicated lives. Hospitals used to be sanctuaries, sort of like schools. They were in a bubble. We were able to provide care in an efficient manner. It was calm and controlled and we were very focused entirely on really what is the clinical care that this patient needs. And today, my perception is that everything that ails society is coming across the threshold of hospitals’ front doors. And, as a result, there are people bringing their own trauma to their healthcare setting and it really complicates the lives of the staff who are trying to do their best as clinicians but they’re not taken away from the bedside to try to address the social and emotional and spiritual and economic needs of the patients and their families.
So the discussion today is largely about HCAPS and about inpatient hospital care, but I want the audience to consider this definition of patient experience from the Beryl Institute, and I hope – you can’t quite see it, I think, in that dark blue bubble, but engaged and caring staff is a really big issue for us to consider. The burnout, the compassion fatigue that clinical staff is starting to express, or not starting to, but increasingly expressing is a topic I hope perhaps we can address in the Q&A, but it’s a really, really important topic. Staff engagement and burnout is a major factor in whether or not we’re able to deliver a robust patient experience.
I also want you to note that this is across the continuum. While we’re talking about an isolated measure set that looks at four days in a hospital, it doesn’t start there or end there for patients. And I’d like the room to consider how do we measure the continuum of care which is really where people’s lives, they came with lives and they leave with lives and they really want to tell us about how our care affects them before and after they are our patient.
When all the votes are tallied and all the surveys are in, this is what HCAPS looks like to me. It’s lots of charts and trend lines and bar charts and voluminous data and thousands of comments and lists and lists of metrics, some defined by CMS, and many others by a range of policy and payer organizations. And, with my Excel charts in hand, I report to the Board of Directors, I report to our executive team, we give our information to payers and to the public, but with all the time that I have to spend, as was referenced earlier, the burden of measurement and the burden of reporting, with all the time that we put into grades and stars and public reporting, I fear that sometimes we’re really missing the point.
And the point is this. This is what HCAPS looks like to patients and staff. These are the domains of HCAPS on a human scale. What informs patients’ experience most is the connection, the touch, the smile. Healthcare is a people business and these interactions are what make or break a patient’s experience. Patients and staff are not motivated by scores and stars. They are motivated by authentic and meaningful communication and compassionate care that does, indeed, lead to better health outcomes.
I would say HCAPS, as currently designed, helps us get partway there for sure, but there is something missing, and I think it’s what you see here. There is no assessment of how people truly care for and about their patients, not clinically, but emotionally, psychologically, and spiritually and there really is no assessment of whether or not these encounters were truly compassionate and person-centered, and they are compassionate and person-centered, and yet our staff is not recognized for that extra effort that they put in to go above and beyond to really care for their patients.
So let’s talk about the power of measurement and especially HCAPS. I want to validate what has already been shared. HCAPS had a huge impact on bringing needed resources and attention to the world of patient experience and to improving it. It used to be, when I raised my hand to say pay attention, pay attention to the patient experience, I’d get a nod and a pat on the back to say, yes, this is very important but not essentially at this time. We’ve got to move on and there are a lot more priorities at the top of the list. Well, what you can see today is patient experience is showing up as the top 5 for most executives at hospitals and other leaders around the country and that is very, very exciting.
I made a list of things that I personally think are pros and cons of the HCAPS in value-based purchasing and there is a lot of information in here, so I hope you can take the time to just take a look at this slide. But I want to call out two key things on the pro side. This tool has helped give a voice to patients, so without this tool, it was only the empowered patient who had the wherewithal to speak up about quality and who got some attention. Standardized measurement tools do level the playing field and allow patients and families from all socioeconomic backgrounds to have a voice. It has also fostered a sharing of best practices around the country among various sectors, like safety net hospitals, in particular, it has been very, very helpful to those of us who are in the field. We have learned a tremendous amount from each other and I’m very proud of the collaborative nature of patient experience sharing. It really is not something that people are using as a competitive advantage, but rather, we’re trying to learn from each other because it really should be the gold standard that we all strive for.
And then, a couple of the challenges. It’s really hard to explain the day-to-day operational challenges of running a hospital, especially as part of a complex system and with limited resources, but running a hospital and what we face every day is a big barrier, and it gets in the way of focusing on improvement. I once worked for Senator Dave Durenberger in the policy arena in Minnesota and we used to be so frustrated that our leaders would come and be inspired by all of our great ideas and then they would go back and they’d agree to implement the improvement and they’d go back to the hospital and it would just die on the vine. And we couldn’t figure out why. They were all charged up when they left the room. But now, being on the inside, I get it. Staff in a hospital often feel like firefighters and there are embers smoldering everywhere. A bridge collapses, Ebola threatens, a drug shortage is announced, and on and on. These things were not on our annual strategic plan, and yet these are the things that consume us on a day-to-day basis and make it really, really hard for us to focus on improving the patient experience. Staff is running as fast as they can just to keep up with the demands of the day, and you can imagine they run the other way when they see me coming with tips on communication skills and how to do an effective discharge plan. That is not their priority.
The tool, as designed, does not measure everything that is important to patients, and you’ve heard a lot about that today. And I would also reiterate that response rates are a major issue, particularly for safety net hospitals. While the nation is seeing a response rate in the mid-20’s, safety nets are at around the mid-teens, 14, 15 percent. You can imagine how hard it is to get a physician to pay attention to data that has a response rate of 14 percent. But, not only that, to me, it’s almost an ethical issue because we are absolutely not hearing from our most disenfranchised patients. We are definitely not hearing from people who don’t speak English, and I’m afraid that we are not getting a representative sample of the people we serve.
So I want to wholeheartedly endorse – I hope everybody reads this because this is an excellent report. I did contribute my thoughts to it, as did many, many other experts in the nation, and I think it’s a really excellent representation of our concerns and our ideas for improvement. So I endorse everything in it, so I’m not going to prioritize or pick anything out and the recommendations are all good. If it is implemented, it will truly enhance my ability and my colleagues’ ability to improve the patients’ experience.
Now, I want to spend a few minutes on this slide. It’s a very important slide to me as an essential hospital, and I hope it is to everybody in this room. Social determinants of health are coming up more and more, and you’re hearing about them a lot in the policy forums. They often undermine health. Housing instability, poverty, limited access to transportation. It’s much more challenging to engage patients in their care and their care outcomes and their care plan when they have these social determinants of health. When you’re worried about whether or not the shelter is going to have a bed for you when you’re discharged with a new diabetes diagnosis, the idea that you don’t actually have a refrigerator to put insulin into will not come up in the conversation. That’s just one tiny little example. I’ll use a patient; I’ll call him Ronald. When Ronald leaves the hospital after a CHF incident, and he goes home and he’s all in on the care plan. He knows he’s supposed to exercise. He knows he’s only supposed to drink 15 milliliters of water a day and then he says, “Well, what the hell is a milliliter?” And that’s a quote from a patient. So, we talked about discharge in our terms and patients don’t really understand what we’re asking them to do. And, finally, Ronald just told us a story last week where he took his meds as long as he could and then he got “kicked off insurance,” in his words, and so he hadn’t taken his meds for six months, but he was afraid to tell anybody because he was embarrassed. So he got readmitted with another incident of heart disease. That’s what’s happening in our hospitals. And, as a result, we’re not meeting the goals and expectations, and thus, we’re not getting the reimbursement that we need, and thus, we don’t have the resources to improve the experiences for these very complex patients. It’s a total vicious cycle and it’s something that I think we really need to spend some time paying attention to.
So patients will tell us – I’ve told you what’s important to me as an administrator, but what’s most important is to ask our patients what’s important to them. And I know Denise is going to give us some great insights from a patient’s perspective, but I want to affirm some of the findings from Bill’s research.
People want us to care about them as a person. They want us to coordinate between encounters, and they want us to give evidence of teamwork. Those are the three things that come out over and over and over again and are not as effectively represented in the survey in its current form and could be enhanced.
There is another way to find out what patients want, and that is to just ask them directly while they’re laying in a bed. And we did so. We asked about 100 patients two questions that the AHI had introduced to us: what matters to you; and, what brings you joy? And what do you see here? The most important thing is the human connection. It’s that I want you to know that I have a family and I want you to know how that family plays in my healthcare. I want you to communicate with me and to be kind and compassionate to me. And this is not something that is easily elicited from the current HCAPS tool and I think Bill also referenced how might we ask this question? And, in fact, it isn’t really that hard. You just stop by the patient’s room and you ask them what matters to them. And actually, the answers transform the way staff thought about person-centered care. It was really an exciting outcome, very simple.
So, I don’t have time to read this story, but it was interesting to me that Mary started out with a patient with heart disease and I’m going to close with one. And what Daryl talked about were not the beta-blockers that we prescribed to him, it was not the exercise regimen, it was not the drugs and the clinical protocols that we had him engaged in, but rather it was a nurse who expressed to him that she cared about him and she was going to do her best work to save his life that actually, in his words, gave him the hope that he needed to come back. And he was, indeed, on his way to the end of his life, but this nurse, in her caring and compassionate way, helped saved Daryl’s life. That’s what patients are eager to get from our system and that is really the crux, I think, of what’s missing in the current tools.
And so, when you go back today to your desks and you think about policymaking and you think about new laws and you think about new legislation, I hope you will remember Daryl’s story and the other stories you’ve heard today and you’re going to hear from Denise because it’s really about the human – we cannot legislate caring, but it should be rewarded because it happens every day.
And with that, I want to thank you and I will be looking forward to talking to anyone afterwards. Thanks.
SARAH DASH: Thanks so much, Sheila. Denise, tell us, from your patient perspective, how this relates, and I’m going to ask – I know some people may have meetings or appointments, if you would, before you leave, make sure you fill out an evaluation form if you have to leave, but I want to hear from Denise, so go ahead.
DENISE DURGIN MALONEY: Certainly. Good afternoon. It’s so exciting to hear all the positive changes. I’m going to talk to you today from two perspectives. First, I am the Global Co-Chair at the Beryl Institute of the Global and Patient Family Advisory Board. When I was called unexpectedly to the cancer journey last year, I thought, right after treatment, what can I do to pay it forward further, is that either: don’t have a voice or can’t contribute, how can I help? And I found the Beryl Institute, so that’s what really brought me here today; and, the second is to talk about my own patient experience as lived through the Beryl Institute’s patient experience framework.
So a little bit about the Beryl Institute. The Beryl Institute is the community of practice that builds the capacity of organizations to deliver exceptional healthcare care experiences and develops individuals who drive experience excellence. So truly, our purpose at the Beryl Institute is to provide evidence-based research, patient experience, assessments, case studies, podcasts, our annual conference, and it’s a place for me that I can contribute and ensure that the patient and the family is always at the center of every conversation of which, I can tell you, it truly is at the Beryl Institute.
It’s so interesting that we all – I saw everyone raise their hands about who’s been in the hospital or who’s here, or a family person, and I think we all have our own definition of the patient experience. Prior to my sudden journey into the cancer situation last year, I spent 28 years in the hotel industry and 25 I was with Marriott and Ritz Carlton in sales and marketing leadership. And so, certainly, I know a lot about culture and how culture and leadership impacts performance and I have my own definition of patient experience.
The Beryl Institute really is very, very similar to how I would define it, which is the sum of all interactions shaped by an organization’s culture that influences the patient perceptions across the continuum of care. I do just want to hone in on that word continuum of care because I know some of my fellow panelists talked about it. From a patient’s standpoint, that word is from the very first phone call I had, I’m a healthy person. I work out five, six times a week. Always get my annual physical and my mammogram, and when I had my mammogram, the first person that called me back, that was where the continuum of care began for me because she was so compassionate, and even interjected humor that, you know, if you’re going to have breast cancer, you know, at least you have one that we have a high degree that we can cure, and so you have sort of the good kind of cancer. And I actually appreciated that sense of humor. It was a very devastating phone call for me, but that’s where the word “continuum” started for me. And I had so many amazing experiences through the Inova Healthcare System here in Virginia. My surgical team was just, and continued to be, outstanding. I, last week, visited the Schar Cancer Institute and my radiation oncologist, Dr. Eblan, when he greets me and his team greets me, it’s like the first time they’ve ever met me. They’re so compassionate. And coming from Marriott and Ritz Carlton, I expected – I was pleased to hear about the patient expectations – I don’t think mine was very different. I just wanted people to treat me how we treated hotel guests when they came and stayed with us at a Marriott or Ritz and I had that with all the team, basically that I hired.
Some, along the way, did not demonstrate and other systems did not demonstrate that warm compassion, and I just – I didn’t select those providers. I looked at their scores, and although they were high, they weren’t compassionate and it made a difference that the scary situation of breast cancer at Stage IIB is something that I want people to be compassionate and really hear me and how terrified I was, but I just carried on.
So high level, at 60,000 feet, the Beryl Institute is changing healthcare by ensuring an unwavering commitment to the human experience and, for me, that’s just – I feel like it’s in my DNA that I am here and compassionate and really want to make a difference, and that really aligns with the Beryl Institute.
So moving forward, a little bit about our Global Patient and Family Advisory Board; there are 12 of us. We represent a cross-section of diversity. We have five countries, diversity in professionalism. We have doctors on the group, myself, with a hospitality background, patient experience leaders, and we support the patient experience leaders and organizations that are part of the membership community. The Beryl Institute has 50,000 members and growing in over 80 countries. And so, we ensure that the patient and family voice is heard in each of the different resources that are available at the Beryl Institute.
When you think about the patient experience, you think, wow, we defined it, but really how does that work and how do you do it? And so last year the Beryl Institute rolled out and created this patient experience framework and I really like it. With a business background and this title of patient, it really just makes sense to me because many of these eight strategic lenses that you do have in your packets and you can read through, I won’t read through them today, but they really do impact a patient’s stay and I’m sure many of you that have had family members and your own experiences in the healthcare system, you know that culture and leadership, environment and hospitality, you expect high clinical outcomes just as somebody would expect an outstanding hotel stay. The expectation really doesn’t change. But this experience framework has really helped provide three things for the Beryl Institute to serve the community and, for me, it just gives clarity to where we should focus. It allows the resources to be aligned and this framework allows an organization to really hone in on where their strengths are as an organization and then where there are opportunities to improve which means really a lot to me as a patient.
So those are the eight strategic lenses and I just want to mention the Beryl Institute’s public policy form, of which Sheila is a part and I am, as well, we do have case studies. We produced a consumer research document on the state of the patient experience and, again, I volunteer my time with the Beryl Institute because of the journey that I was on. And I touched on it a little bit. It was very important to me as I decided unexpectedly, when you go into the cancer journey, you have to make decisions quickly and you have no idea what you’re doing and you’re very scared and one of the places that I went with my consumer hat on is, I want to look at all of the feedback that these providers have. I expect them to have high quality in clinical excellence. Of course, that’s going to be the first thing in safety and quality in these strategic lenses, but also, I want somebody to really feel what I’m going through and I’m a person that doesn’t need to be coddled, and I worked out and worked through all the treatments, but I just really wanted my voice to be heard. And it’s so interesting that you share a nurse’s story because my physicians were all just really phenomenal, but I did have one nurse that, at the Inova Women’s Center, she knew I never had a surgery in my life and now I was having two in one day and I was hoping to be discharged that day, and I got to make that decision with my doctor that I did get discharged on the day of surgery. But this nurse, when I got onto the table and anesthesia, I mean, it sounds so silly, but she held my hand. And she said, “You know what? We’re going to be here for you when you wake up.” And I know, for me, that just really made my day. And, Sheila, when you mentioned about the different conversations, when I am with my physician team and they just first stopped to say hello to me and look me in the eye and say, “How are you doing today, and what’s going on in your world? Are you taking any vacations?” That just means the world to me. It might sound so silly and trite, but for me, it’s really had a positive impact on my healing and I feel that I can make these decisions with my physicians.
So that’s a little bit about my story, and I’m just so excited to be a part of the panel today and to hear all the exciting things going on with the patient experience movement. Thank you.
SARAH DASH: Thank you so much, Denise. So we have about 20 minutes for a Q&A and I really hope that you all stay and ask your questions. We do have green cards if you want to write a question down; someone will pick it up. We also have two mics. They’re a little hard to see, but you can stand up and ask a question.
I’m going to just quickly kick us off with this question. I mean, I think you all talked about the importance of the clinician workforce in improving the patient experience, and I want to ask Mary and Sheila to reflect on that. I think Sheila said they run away from me when I have tips on how to be more patient-centered and has that been your experience, Mary? How does that actually work in implementation?
- MARY TINETTI: Yes, that’s probably true. I put on my clinician hat. I think, as we said, I mean, none of us go in there to do a bad job, right? I mean, we all go in to do the best we can and when we sort of feel like – I think she said it beautifully – to us, the experiences that one-on-one experience that doesn’t get captured in any survey. I don’t care how perfect and beautiful the survey is, it’s not going to capture what really matters in those individual encounters.
So I think we do feel very bombarded by how much documentation we’re expected to do that a lot of us feel doesn’t reflect exactly what really matters. That being said, we do have to measure things, so I think the less we measure and the more important the things are that we measure, I think is the answer to the question from my perspective.
SHEILA DELANEY MORONEY: So I would just like to add a little bit of commentary on the whole topic of burnout, and it is a real thing. It is a growing epidemic, I would say. It’s labeled in a variety of ways. It’s compassion fatigue, it’s burnout, it’s exhaustion. There has been a ton of press and attention around burnout for physicians in particular, and providers, but I would also say pay attention to every member of the team. The nurses are taking it on the head on a daily basis, and I think all clinical care staff really need some TLC in order to help them get through this. And it’s not about getting through, it’s really about addressing some of the issues that they’re facing, and I think Mary talked about one of them, which is the burden of documentation. It’s just one more thing on top of a very, very intense 12-hour day. And if we don’t pay attention to this, there’s an adage that says: You can’t give what you don’t have. And so, as people become more and more drained by the reality of the challenges of delivering healthcare, they will be less and less able to deliver the ideal care that our patients are wanting and needing.
So this topic of staff engagement, staff burnout, whatever you want to call it, is something that really deserves attention.
SARAH DASH: Thank you. So we have a question on the card for Bill and maybe you could speak to this, which is: Were you able to assess any questions that asked the patient about whether their own priorities of care were asked about while they were in the hospital?
BILL McINTURFF: No, but I think that’s an interesting idea. I think it’s something that could be tested and administered.
SARAH DASH: Thank you. I want to kind of open this up to the panel. I mean, I think Shantanu, you were the one kind of giving the timeline of HCAPS that sort of launched roughly ten years ago, so we’re a little late for the 10th birthday, but we’re kind of close. Do you see this as kind of part of a continuum in our healthcare system of really asking about the patient experience? Sheila mentioned the priorities of hospital executives. Do you think that’s because of HCAPS, and do you think that we’re on sort of a second wave now of kind of better understanding how to capture and measure what’s important to patients?
SHANTANU AGRAWAL: Yes. I would agree with something that Bill said, which is that undeniably, the HCAPS surveys, the CAP surveys, have really pushed the field forward. They have universalized the assessment of patient experience, raised the notoriety of it, the importance to delivery systems. When I was going through medical education, as one data point, discharges were handled by the lowest person that you could possibly get to do them. So it was the medical student, it was the intern, and when those people weren’t available, you moved your way up the chain. That’s exactly wrong for high-quality care delivery. And you see, in all of these surveys you can see in any kind of analysis of the data, that discharge process is extremely critical to patients. It is a form of care coordination that makes them a part of the coordination journey so that they connect their inpatient stay to their outpatient life.
So I think the fact that we’ve taken these surveys, made them part of the overall healthcare enterprise is really critical because it has, then, forced us to treat this as a strategic topic, not just a part of the process of hospitalization. I mean, where does this go from here? The data, I mean, another great thing about the whole enterprise is that there is a lot more data now so we can understand what really moves the needle on patient experience. There is much more acceptance of patients being involved in the design of surveys, et cetera, which I think is really important. And, as I teed up, I think it’s really important to try to figure out how these results compare to clinical outcome measures, and how we really move the field forward toward patient-reported outcome so it’s not just about experience, but I think experience should, and always will be part of the measurement milieu.
SARAH DASH: Does anyone else want to comment on that question?
SHEILA DELANEY MORONEY: I just have one reflection on that. I agree that it is here, it should be here to stay, and it has been very valuable for us. What I worry about is the slide that Dr. Agrawal showed with the 15 or 17 CAPS tools and that there is the promise of more. And I’m worried that we are sort of recreating or reinforcing the siloed nature of healthcare and so that pretty soon, maybe everybody part is going to have a survey, just like every clinician who walks in the room is responsible for a body part, and that’s how it feels to patients right now. And we’re trying hard, I think all of us collectively in the quality and the safety world, we’re trying hard to make it be more of a bundled experience to make it feel like there is continuity from when you’re at home, you get the diagnosis, to when you have surgery, to when you go back home again. And so, I would only put a word of caution out there to not keep creating unique tools that are isolated from one another but somehow find a way to weave it together for the patients to share their perspective of whether or not we, indeed, are weaving their care together.
SARAH DASH: Mary, you’re nodding. Is there anything you want to add?
- MARY TINETTI: Yes. I would say we could get rid of all of those surveys and all of the questions is we just asked what you wanted most, ask for, and did you achieve it? You could get rid of everything else. That’s obviously pie-in-the-sky and aspirational. We’re very far from that, but everything else will kind of come through that.
SARAH DASH: There is a question at the mic, and then we have a lot of really great questions on cards. So do you want to go ahead and ask your question?
AUDIENCE MEMBER: Hi. Yes, thanks. My question is for Sheila. You mentioned that the response rate for essential hospitals or safety net providers is significantly, significantly less than other hospitals. Can you talk a little bit about why hospitals like yours that are essential hospitals are seeing these lower response rates; and then, also maybe what more we can do to help out these safety net providers?
SHEILA DELANEY MORONEY: Well, I wish I knew. There are probably researchers in the room and I’m going to talk to Bill later about some of the research findings about why that is, but through our own analysis and questioning of our patients, there are a couple of things. One is while each individual question passes the sniff test for reading level, I think, as a whole, the document is somewhat onerous to people who have a low literacy level. So altogether, it is kind of a daunting document for people to complete. The language accessibility is a really big deal for safety nets. Thirty percent of our patients have limited English proficiency and prefer to communicate in a language other than English. So, while we send out the survey in other languages, it doesn’t always hit the mark in terms of how those patients feel comfortable responding.
And then, this is my own impression from talking to people and especially the interpreters who I work with a lot, in that people are afraid to respond to the survey because it represents the government, or their perception is it represents the government, so people who are trying to stay under the radar feel like they might be outed if they answer it.
And then, finally, it’s hard to reach people, especially who are homeless or who don’t have a permanent address and to find them in the midst of their crazy, chaotic lives and say, “Can you take the time to fill out the survey,” when they’re worried about whether or not the lights are going to be turned off in their homes is a really big ask. So that’s my impression without research data behind it.
SARAH DASH: So I’m going to follow up on that really quick and ask Bill or Shantanu to weigh in because we have a couple questions about how to improve response rates, so if you could kind of add that onto your response.
BILL McINTURFF: Well, almost nothing about that list is going to get fixed. Those are endemic and very difficult to fix. In a lot of other research settings, what happens is you pay people who did not respond and go collect the data in person. There has been a lot of evidence in different research settings that the people who then will respond are demographically a lot like the responders, and so if I’m a 65-year-old-plus male, if I had a heart thing, I might not have filled out the survey, but if I have this education level and this demographic with this thing, I’m a lot like those who did. Now, you get to some ridiculous point where how do you know the people who take the money to do this survey in person are like the people who still won’t cooperate? However, at these still really high response rates, I want to at least be encouraging that even in the low, high, mid to high 20’s, these are still very high response rates. You won’t fix a lot of that stuff, but the other thing that can be done is I do believe that a smartphone version and an online version will kick up response rates. Not so much maybe at 70, 75+ but, by the way, you’ll be surprised in how deep the penetration is now with smartphones and laptops in that age bracket.
But I really believe that an online administration would go a long way to kick back up the rates, but lastly, and I mean, this is, the U.S. government goes through this with the census and spends billions of dollars and the checklist you’ve been through is the same checklist that means the response rates for the census are impaired. So with billions of dollars once every decade, if you can’t fix that set, it’ll be very, very difficult to fix the HCAPS.
SARAH DASH: Yes, real quick.
SHANTANU AGRAWAL: I agree. I think if you look at overall response rates to mail-in surveys and actually hitting 27, 30 percent is actually quite good. I would go back, though, to a point that maybe Sheila made if you’re trying to get clinicians to alter their behavior, telling them about a 27 percent response rate is going to be very problematic. I would respond, well, why do I have to worry about this? You don’t know what two-thirds of the people are thinking, right? So, statistically, it’s great. I think it’s very hard to get people to really prioritize making a change, so I do think we’ve got to make a strong effort. Online, smartphones, more languages, perhaps even in-person interviews in order to capture as much data as possible.
You know, one thing that I personally take as somewhat concerning is if you look at the current data, socioeconomic status does correlate to the responses. So people of generally higher socioeconomic status actually report a better experience than people with lower. That should be concerning. It could be an outcome of just the paucity of data itself, but I think we’ve got to make an effort because what we don’t want is for these surveys to be demonstrating that we’re creating or that we’ve sort of instilled a bifurcated healthcare system.
SARAH DASH: Thank you. Okay. I think Denise had something to add. So how big of a priority was answering a survey after your care?
DENIS DURGIN MALONEY: Yes. I did want to just comment because of my professional background and coming from the hotel industry, I knew how much these surveys meant to us and how they could drive process improvement and definitely recognition of our teams, and so I really wanted to fill in the survey and, of course, now I know it’s an HCAP Survey, but the first one I received, I’d had a mastectomy and I couldn’t really write – I couldn’t actually write to fill out the survey. So if it was timed a little bit different, and I know that’s probably beyond the control, but for me, if it was timed a little bit later I could have written, and wanted to write a lot more because my care team was so amazing in all – the arrival, during, and post.
The other aspect I wanted to share is just what the survey didn’t capture is my breast surgeon and plastic surgeon calling and checking in on me and making a personal phone call just to see how I was doing. I’m not sure how that gets captured on a survey, but for me, when you think about the continuum of care, these memories that I have that were created were from just simple phone calls, even if it was from a nurse that was concerned because I had a question with some things that were unexpected after surgery.
So I would just say those two things and then I have had many other surveys. I continue to receive care. I finished treatment last June but I’m in the system and I’m constantly getting surveys and, for me, I fill out as many as I can because I think it’s so important for the providers to get that feedback, especially when mine has been so positive. The only place it wasn’t is during the insurance process, which I know this isn’t the forum for that. [Laughter]
SARAH DASH: We do have a couple of questions about health plans that I want to get to, but first, I want to ask a question that came in and kind of combine it with another question which is: Is there a vision, or should there be, for working towards measuring patient experience at the individual clinician level so many of you talked about through the individual clinician’s, and I say clinician broadly, impact, but then I also want to ask what’s really driving that clinician behavior incentive? I mean, is it the fact that there is kind of a survey? Is it the fact that their executives are pushing for patient experience, or is it like wanting to deliver better care and maybe not having a mechanism for sort of asking about that patient care?
So that’s a lot of questions, but I wanted to start with the individual clinician level question. Is there any activity there? Sheila, you’re looking at me. Do you want to start?
SHEILA DELANEY MORONEY: So I don’t see how it’s possible, in the inpatient setting or even appropriate in the outpatient setting for sure. In CG CAPS we administer it via e-mail and mail. It comes back with individual physicians associated with individual encounters because you see one doctor typically in the exam room in an outpatient setting. But especially in teaching hospitals, you will see, in an average four-day stay, staff will walk in and out of a patient’s room 100 times and a patient will be exposed to somewhere between 14 and 17 disciplines. All of that cannot be tied to just one physician, nor should it be.
But I think that the rub is that providers do – I was being facetious before when I said they ran away from me – they do want to get better and they do want to know what patients think, but they’re much more engaged by the comments and by the stories that people tell than they are by the data. But they are also, in a teaching hospital, they’re a little hard-pressed to acknowledge or accept that those were my patients versus those were the patients that the orthopedics team saw versus those were the patients that my resident saw. That’s a long conversation, so I don’t know that it’s possible and it would be a lot of effort to try to figure that out. That might not have a good productive result.
SARAH DASH: So I just want to ask, because there were a couple of questions before we run out of time. There were a couple of questions related to kind of this broader issue that there are many CAP surveys, that many of the challenges that were raised about HCAPS are true of most, if not all of the surveys and kind of asking what’s the role or the opportunity for other folks in the healthcare system, health plans, or others. So I don’t know. There’s no quick answer to that, but Shantanu, since you’re the one who showed the list, I’m calling on you. What is the sort of total patient experience that we can count on?
SHANTANU AGRAWAL: That is really challenging. I think I’ll just highlight maybe some of the themes that certainly has resonated to me and including on this panel. I think, first, we want to try to represent as much of a coordinated integrated care system as possible. So I agree with the point that a bunch of bifurcated, you know, CAP surveys that essentially segment out different institutional types isn’t probably the patient perspective on healthcare. And we do as much as possible, I think, for these surveys to matter. They really do have to be focused on what moves the needle most for patients.
The only thing I would maybe bounce that against is patients have a very hard time, at least according to the data, just assessing the healthcare system as a whole or extremely long periods of times in their care, like, you know, six months or a year of care. They really need something to hinge their feedback around. So a hospitalization is something, sort of in a sense, easy because it’s a finite period of time. You recall it and you can recall salient elements of it. But if we’re going to move to a different model, I think we’ve still got to hang it on a set of experiences that the patient can understand and really recall very well because that’s what gives actionable results in these kinds of surveys so that the system, the delivery system knows how to respond to everything that patients are telling them.
And, maybe the last thing I’d leave you with is if you just correlate the data that we currently have in HCAPS if you just ask the question: what’s correlated to those global ratings, you know, how would you overall rate the hospital and would you recommend the hospital? What it all comes down to, what correlates most against it is, by far and away, nursing communication, right? That matters the most. So if you think about the last question about, you know, can you do this at the clinician level, I’m not actually sure the physician level is what patients care about. What they’re telling us is nurses matter a lot and so I think if you were to do it at the individual clinician level, you’d have to really take a much more expansive approach which might not be feasible.
So nursing communication, discharge, and then distant, unfortunately, is the physician. And I don’t know if that’s so much a patient thing or if we’ve kind of put ourselves in that place by kind of making our communication less meaningful. But if there’s something that we ought to work on, far and away, the whole thing matters but the way your nurses interact with your patients is deeply meaningful to them.
SARAH DASH: Thank you so much. Oh, did you have one more thing to say?
BILL McINTURFF: Well, just that’s what I’m saying on the revised questionnaire. That’s what was interesting about it because the thing that outdid the nurses was: During this hospital stay, how often did doctors, nurses, and staff work together to provide you timely, efficient care? So it’s a good – I’m sorry, but it’s a great example of we replicated the same thing where the nurses were the most powerful thing in HCAPS, but it’s a final nice reminder that there may be other questions out there that could be even stronger.
SARAH DASH: Great. All right, with that, we are out of time. I want to thank our panel. Thank you again to the Federation of American Hospitals for making this briefing possible. And if you would, because we care about outcomes, fill out your blue evaluation. Hopefully, the content of the panel mattered more to you than the fact that the room was freezing, but thanks again for sticking it out. Thanks for being here. Join me in thanking our panel.