A conversation with Ellen Schultz. How can we best commit to improving what’s vital in our local health care system? Commitment is will, resources, and time. Measuring can’t take more effort than improving. Engage people at the center: patients, clinicians, and the people that support them. Focus on relationships. Measure consistency and sustainability. As in any health effort – exercise weak muscles.
CMS (Center for Medicare and Medicaid)’s work on Value-Based Measures matters for patients and caregivers because we seek affordable, accessible, equitable, and effective medical care. Or in English: Transparent cost within my means, in a location I can reach, in a fair and unbiased manner, for care that is likely to move me and mine toward best health. We, patient/caregiver experts, need a seat at the tables of governance, design, operations, and learning in the medical industrial complex to advocate for that kind of care.
I sat in one such seat (ten of twenty members represented the patient perspective!) on a CMS TEP (Technical Expert Panel). Here’s a blog post I wrote about it Oct 2017 and here’s the associated final CMS report. As I wrote in that post, Payment for medical services is shifting from paying for volume (more visits, tests, visits, days = more money) to paying for value (quality of care). Makes sense. But what does value and quality of care mean? It means that physicians get paid an incentive (more money) for certain results (outcomes, process, actions). An example is readmission rates. If a physician’s patients are readmitted to a hospital after discharge more than most physicians, they don’t get the extra payment. There are roughly 1,000 of such quality measures. These quality measures are very important to us – people at the center of care (patients, caregivers, parents, direct care clinicians, and staff) – because measurement strongly influences people and organizations who get paid for medical services. Following the money doesn’t necessarily mean better medical care, better health for us, better relationships among our healthcare teams, or better work life for our health professional partners.
The Panel completed its work in July and CMS just published the final report from the Panel. We did good work, our recommendations were heard!
Important to us, People at the Center of Care, are the following recommendations:
- CMS should support measure developers, for example, by promoting the development of a toolkit to assist developers with patient and caregiver engagement. Companies and researchers that develop measures have just begun to learn how to engage patients and caregivers in the work of creating and testing quality measures. They need a roadmap (toolkit). The toolkit should include project planning that includes patient advisors, orientation for patient advisors, guides that researchers can use to recruit patient advisors, communication tools that patient advisors can understand and find.
- Patients and caregivers need to be engaged in all aspects of measure development from priority setting to reevaluation. Just like in any aspect of health care, patient and caregiver experts need a seat at the table of governance, design, testing, sharing and learning.
- Priorities for measures should be based on domains or conditions, not clinical settings or programs. Often measures are hospital-based or office-based. Yet, as patients and caregivers know, care occurs across settings and involves a team of professionals. The measures should reflect that span of care. For example, rather than developing measures intended for hospitals or eligible providers, CMS would focus instead on a clinical domain such as osteoarthritis. In targeting osteoarthritis holistically, CMS can develop measures that track patients across the continuum of care they receive for that condition—developing measures that assess performance among the primary care providers, radiologists, pathologists, rheumatologists, orthopedic surgeons, and other clinicians that might be involved in the treatment of that condition.
The good news is that CMS has already published Requests for Proposals (RFP) about including patient advisors in the measure development process. The bad news is that these RFPs do not expect patient experts to be paid for their work by measure developers. Currently, CMS expects that participants in Technical Expert Panels work pro bono or be subsidized by their employers. Measure development companies, academia, and national advocacy organizations willingly have their employees volunteer with CMS since they benefit from the networking connection, early intelligence, and addition to their resumes or websites. They are still paid their salary for the work. On the other hand, patient experts, included in measure development are usually not so employed and are not compensated for their time. This is not reasonable or equitable. Expertise has value and should be compensated. I am not paid for my work with CMS. I don’t care about padding my resume. I don’t need a better network – part of my value is my network. My time and skill are valuable. Oh well, one step at a time. PCORI gets it. We have more work to do with CMS.
As you may know from previous posts, I sit on a Center for Medicare and Medicaid Services (CMS) panel about Quality Measurement Development: Supporting Efficiency and Innovation in the Process of Developing CMS Quality Measures. Jeesh! What a mouthful! In English, for me, this means, if Medicare is going to pay for value in health services, what is value? How will value be measured? How will value measures be created? And, should we care? We (people at the center of care – patients, clinicians, and those that support us) absolutely should care. First of all, we are the ones who are actually paying. Medicare, Medicaid, and insurance companies write the checks, but their accounts are filled by us as taxpayers and employees. The more money spent on healthcare, the less money is spent on our wages, public health, safety, everything. Hospitals and professional practices respond to how they get paid more than anything. When they are paid for volume – more treatment, surgery, days, and visits – they do more since it means more money for them. We know that more does not necessarily mean better for our health. The healthcare industry is creeping toward paying for value, not volume. Value should mean better medical care, better health, better relationships within our health teams, and better work life for those of us that are professionals. The definition and the measurement of value become critical. An example is readmission rates. Volume is paying for every admission. Value is not paying for a readmission to a hospital within a certain number of days. There are roughly 1,000 of such quality or value measures.
I want to share with you some of the recommendations made by the technical expert panel so far (this is from the second of four all-day sessions). You can find the full report from the January meeting here on the CMS website, but it’s hard to get to the report, so I put it here to make it easier. I’m listing the recommendations below with my interpretation in italics of what they mean. Nobody at CMS or Battelle or the Panel has endorsed my interpretations. They’re all mine. But it’s no good if you don’t know what’s going on and I’m not sure if reading the report will help. So, here goes:
- Institute a governance process to help plan, develop, and manage shared measure testing resources. Measures need to be tested to see if they work. Working means that they measure what we want them to measure, that they measure the same thing every time, and that it makes sense. People developing measures use large sets of data to test to see if the measures work. Many organizations suggest measures, measure the measures, and publish the measures. This recommendation says that there needs to be a governance process (a clear and understandable way to make decisions) about how measures are tested. Right now measures are mostly tested using claims and electronic medical record data. It’s not enough. Data from patients and the experience of patients and clinicians are important too. We don’t have much experience with using this kind of data for value. Lots of decisions ahead of us.
- Incentivize participation in measure testing. Everyone who creates measures won’t test measures out of the goodness of their hearts or because it’s the right thing to do. Incentives encourage people to test measures in new ways. Incentives for organizations can be similar to incentives for people. I am more likely to do something if it’s easier than not doing it; if it’s required with a penalty if I don’t; if people give me credit for my work; if I get paid or a discount on something else; if I get more business if I do it. You get the idea.
- Promote data element standardization and education. Measures are made up of data elements. A very simple measure is the fraction of females in a group (55% of the group are females). But it’s not so simple. How do you define the group and how do you define the data element, females? Is a female a person that can bear children, has two X chromosomes, self-identifies as female… What’s important with measures is that everyone using the measure defines it the same – there are agreed upon standards. A requirement to make the definitions and standards available for anyone to see helps too. Nothing hidden.
- Implement a framework with a long-term plan on how CMS will approach measurement. Changes to the way measures are developed won’t happen by waving a magic wand. It takes time and effort by lots of people. Some things tried, won’t work. Something else will need to be tried. It takes a long-term plan, like retirement. We need a picture of how the plan will move along and adapt to new knowledge. That’s the framework.
- Institute an acceptable “quick path to failure” mechanism in the measure development process with well-defined steps. Developing measures is expensive and time-consuming. Whenever new things are tried, some don’t work. We don’t learn to walk without falling. We need to know that something isn’t going to work as soon as possible so we can try something else. But if people are going to “fail early” they need to know how to do that and be paid for the work they do, even if it doesn’t turn out as expected. Again, incentives.
- To facilitate development of cross-program measures, consider a different organizing structure for measure development contracts/projects that cuts across programs. Right now, most measures are diagnosis-specific for one setting (home, hospital, nursing home). But people aren’t their diagnosis and they spend time in many settings. Measures across diagnoses and settings are hard to develop. The science is young. They’re different and should be managed differently. As a patient, I care about this a lot.
- Provide funding for the development and implementation of a national testing collaborative. Changing how we develop measures is expensive and a risk. The government should pay for some of this experimenting with testing. It’s an incentive.
- Develop an objective scoring system to evaluate measure testing concepts that are currently assessed subjectively such as importance, burden, and feasibility. Changing how measures are tested could end up like the Wild West- shooting from the hip, pretty wild, with those having big guns controlling the town. Having a scoring system (more points for helping patients and clinicians, more points if it’s easy to do it in many places, more points if I can do it the same way after you figure it out) really helps manage these new ways of testing measures.
Overwhelmed? No wonder. Me, too. I’m sitting at this table because I think it’s important stuff. I appreciate that CMS cares and included me. I respect the knowledge and passion of those around the table and they respect me. It’s government at its best. It helps when you understand this too. Even a little bit. Please ask questions, comment, and share. We’re pretty smart but not as smart as we think. We need your smarts.