Measuring the Value of Patient-Centered Care: Last Week’s Hangout Participants Address Unanswered Questions

Is it possible to measure the value of patient-centered care? Last week, as part of TEDMED’s Great Challenges Program, a multi-disciplinary group of experts moderated by Boston NPR Health Care Reporter Martha Bebinger, discussed the rise of patient-centered care, explored how we can standardize its measurement to encourage evidence-based policy changes, and touched on what those potential policy changes might look like.

If you weren’t able to join us, check out the recast here:

Thanks again for taking to social media to submit your questions and comments! We had such wonderful questions that an hour left us short on time to address them all. So, we asked a few of our panelists, Steven Horowitz, Alyssa Wostrel and Alex Drane, to offer their perspectives on several remaining questions. Read on for their thoughts:

What are the pros and/or cons of relying on patient or healthcare provider self-reporting of patient-centered care?

Steven: The patient’s assessment of pain and suffering is the gold standard for this measurement. This may be influenced by behavioral problems, addiction or mental illness. How many patients have these problems may vary significantly from community to community, thus survey results may be difficult to compare between geographical regions. In terms of the healthcare provider assessing his or her own performance, I’m reminded of one comedian’s line: “85% of car drivers consider themselves above average.” Many surveys show discordance between what healthcare providers consider important and what patients and families consider important. That does not mean the opinion of the healthcare provider is not helpful. However, the experience of the patient essentially defines the concept of patient-centered care.

If we encourage heavy focus on data (such as survey results), should we be concerned that it may take the attention off of actual patient care? Is there a chance that meeting the specific numbers might not equate to care that is focused on the patient?

Steven: Good question! Surveys and other assessment tools are critically important to generate the data we need for continuous quality improvement. This data keeps us on target for addressing the needs of the patients, however, when these results are blindly tied to pay and promotions there is great potential healthcare providers may inordinately focus on survey results to the exclusion of other important considerations.

Alex: It depends on what you are surveying! Historically, the industry has focused on measuring things that are clinical in nature – these are important indicators of overall health, but may themselves be just markers of other issues. For example, maybe my blood pressure is high because I hate my boss and dealing with him makes my heart race. You can tell me to work on managing my blood pressure or eating better, but if you don’t know why those things are happening, you’re squeezing a water balloon. If, on the other hand, you were asking me about my workplace stress and I told you it was high, then you could provide me with some resources to help, and we could begin to track how well they were working against, let’s say, a goal of a 30% improvement. If workplace stress is what’s making me unhealthy, then reducing my workplace stress by 30% would equate to care that is very much focused on me. We all know the old adage “you can’t manage what you can’t measure” – we need to measure the things that matter so we can manage them. 

If we achieve a standardized measurement system for patient-centered care, do you see a place for rewarding healthcare providers who consistently deliver this type of care? If so, how might that work?

Steven: Healthcare providers, or better, teams of healthcare providers, should be rewarded for consistently outstanding results in patient-centered care. The difficulty remains, however, that high achievers may represent healthcare providers adept at gaming the system or, more hopefully, healthcare providers who have created an outstanding culture of patient-centered care that any assessment would identify. 

What steps can patients take to ensure the care they receive is tailored to them?

Steven: Patients need to ask critical questions, speak to current patients if they are allowed to, review standard healthcare and physician grading systems to identify flaws, and most importantly, avail themselves of the many electronic resources available about how to become a successful and informed patient.

Alex: This is one of the easiest, and hardest, questions in all of health care. The concept of what we can do is enormously straightforward: become empowered, get informed, stand up for what we care about, demand care that is commensurate with our values and beliefs. But oh boy, that can be hard to do. I’m the queen of walking into a doctor’s office ready to demand this and that – only to slouch out, tail between my legs, with none of my original goals shared, acknowledged, let alone addressed. Whose fault is that? On some level, it’s mine. Slowly, with time, with sharing enabled by new technologies, with shifting demographics and new “norms,” we will rise up and demand to be equal participants in our own care – and we will be happier, healthier, and all the more productive (providers, too!). A great low-hanging fruit as we transition from one end of the spectrum to the other is to become an advocate for someone else’s health – bit by bit, if we all commit to do this for each other, we’ll help speed the arrival of a new normal where collaborative, empathetic, holistic care is rarely the exception.

Some argue that medical care is meant to cure – not to cater to patients. What would you say to those who purport that sometimes, the patient isn’t right and needs to be sternly told what to do? 

Steven: In conversations with patients I try to be as supportive and understanding of their concerns as possible, but I’m very clear about my own interpretation of the literature and what I think is in the best interest of the patient. At times I will tell a patient that we are dealing with two separate issues that are interrelated: the healthcare condition that needs treatment and the the underlying fear that may cause denial. It’s at these moments when I express my concern that the emotional component may interfere with the patient choosing the best medical option.

Alyssa: This question suggests a controlling and patronizing role may be successful and necessary in reaching the “cure.” One of the key problems with this approach is that it denies the patient involvement in and accountability for their own health and well-being.

Alex: We’ve all read the literature showing the more collaborative and shared the decision-making is, the better the outcomes. There is also increasing evidence that outcomes in situations where a provider shows empathy trump those where they do not. The days of old-fashioned paternalistic care are coming to an end…all hail the new day!  Look at the extraordinary success of efforts like “Open Notes” at Beth Israel – “Nothing about me without me.” Now – is it true that there might be some souls who, when asked, request an extremely militaristic approach to care delivery? Sure! But then it would be their choice.

What is the best solution for keeping patients engaged and involved? 

Steven: It is important to be respectful and empathic and meet the patient where he or she is now. Encouragement and praise for the patient starting to take responsibility for understanding their condition and becoming proactive is often a turning point in their care.

Alex: If I’m pretty sure my husband is cheating on me and I just got fired…do I really have the capacity to focus on my diabetes? We need to expand the definition of health to include life – because when life goes wrong, health goes wrong. Not only do life challenges sap our capacity to care for ourselves in traditional ways (eating well, taking our meds, exercising, sleeping, taking care of our preventive screenings…) – they actually make us sick as well. Solve the problems real people want solved, redefine “vital signs” to include what is most vital. Meet us in the messy realities of our lives, where we live, work, and play (or pray!) – and not only will we engage, we’ll finally be enabled to make real change to our health. I recently had the great fortune to work with RWJF on their Pioneering Ideas effort, and through that was introduced to the work of Sendhil Mullainathan out of Harvard. Sendhil talks about the difference between something being important and something being urgent. Going to the gym is important – making sure your marriage isn’t collapsing is urgent. Given his additional assertion that time and attention are scarce commodities – how do we incorporate the reality of “attentional real estate” in our attempts to foundationally impact health?  He’s building some super sexy tools to help – so listen here when you get a chance: RWJF’s Pioneering Ideas podcast.

How do we involve patients in crafting policy changes for patient-centered care?

Alyssa: Including patients on hospital and community health center boards and committees to hear their feedback and to involve them in finding and implementing solutions has gotten excellent results.

Dr. Selby observed that measuring patient experience is difficult to do via objective measures (which I think is true). Yet clinicians often show reluctance to embrace subjective assessments. What can be done to change this culture? 

Steven: This is also an excellent question! There are several ways this can change. One is the continued tying together of surveys with critical outcomes. This may include freedom from suffering, duration of illness, complications of treatment and longevity. The ones that I feel strongly about, for which we have barely put a toe in the water, include objective laboratory assessments of inflammatory markers and gene expression. Although “hard” measurements, they may be influenced by “soft” intervention such as meditation, empathy, exercise, diet and sleep.