Patient Expertise Blog

Submitted by on Fri, 03/02/2018 - 16:52

Innovating CMS Value-Based Measure Development


Providers of medical care can be paid by volume or value. Paid for volume, or fee-for-service, means providing more services, receiving more pay. Fairly straightforward. Paying for value depends on the definition and measurement of value. Value to whom? Value to patients, value to clinicians, value to communities, value to insurers? We like to think that evidence – research – heavily influences clinical decisions, yet we know that payment influences clinical decisions as well. We could argue which influences decisions more, but let’s just say they both do. Evidence certainly affects measurement of value. Politically and practically, measures of value depend on what is measurable and what has been studied. We look where the research is.
As patients and clinicians make more clinical decisions together within more equal relationships, their perceptions of value change. That change requires different clinical quality measures of value. The research isn't there yet. How can the value-based measure development system support this evolution in patient / clinician experience of medical care value?
This post is written with many stakeholders in mind but primarily for people at the center of care (patients, direct care clinicians, and people that support them).  

The Story

Author and his mother
              Danny and his mother

I’m the child, Custodian, and Healthcare Proxy of my 89-year-old mother, Alice. I live in a different state. My mother has diabetes and is depressed. Her care team, beside herself and me, includes medical providers in various health settings, community support agencies, and a full-time caregiver that helps her schedule and get to health-related services. My problem is to understand what my mother wants for herself, make decisions about her medical care with her and her professional team, and to track who says they’re doing something for her (including my mother and me), what they’re doing, and when they’re doing it. I want to know what it takes to do it (Can she afford it? Can she get there? Does it agree with her? Who will be with her? etc.). I want to know if the actions have the effects we thought they would. I want to know what her risks are and how we plan to prevent or respond to them. I want to able to keep track of all this and keep it current. I want to share it or have it shared from day-to-day and from setting to setting even if I’m not present.

This scenario describes a vision of healthcare for a caregiver and his mother. The vision lives in a context of social circumstances, physical environment, individual behavior, genetics, and medical care – the determinants of health. In the best of circumstances, healthcare dollars pay for this vision of best health for people, their families, and communities.

Recognizing best health (value) is complex. The scenario above reflects what patients and family caregivers want. We want to:

  1. Function as well as possible, improve or maintain our mental and spiritual health, and stay safe.

  2. Work with a team we can trust, who has time for us, and work with each other (including us).

  3. Get help to clarify and communicate our health goals and preferences and understand how treating our medical problems will make it easier for us reach those goals.

  4. Experience empathy from our team about our life challenges and barriers.

  5. Make informed choices with our teams as we build a plan for our care.

  6. Be sure smooth communication about us occurs across settings and team members (transitions in care) i.e. keep track of our overall plan of care (including mitigating health risks) and our progress and challenges in meeting that plan.

  7. Live in communities that offer non-medical services that increase the likelihood of our best health.

  8. Learn together what works for us and try something different when something tried doesn’t work.

  9. Support those who care for us (professional and non-professional) so they maintain their own health and don’t burn out.

  10. Be able to understand, predict, and afford the cost of treatment and service.

Notice that this scenario about Alice and her son is not diagnosis or setting-specific. Your circumstances will be different. Those circumstances are the determinants of health. Thankfully, the ten wants above are common to any diagnosis and setting. Sadly, our current national health and sickness payment systems reimburse none of the ten wants. There aren’t widely accepted ways of measuring best health (outcomes) as listed here. We also don’t well measure the workflows and life flows (processes) that help us reach the outcomes. The problem with not being able to measure these views of quality is that we can’t then pay for value that is meaningful to us. Without alignment of payment and value, providers and payers of health treatment and services won’t fully help us meet our ten wants. We have a lot of work to do.

The Implementation

The Center for Medicare and Medicaid Services (CMS) is a big player in value-based payment and a big customer of value measurement. I sit on a CMS Technical Expert Panel (TEP) developing recommendations to support efficiency and innovation in the process of developing CMS Quality Measures. During the first of four all-day meetings of the TEP it became clear that all the participant stakeholders (CMS Measure Instrument Development & Support (MIDS) measure development contractors, non-CMS measure developers, electronic health record (EHR) vendors, hospital/clinician system representatives, and patient and caregiver advocacy group representatives) agreed that innovation required the development of patient-centered measures.

Here are some of the draft recommendations made by the TEP so far (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 TEP has endorsed my interpretations. They're all mine. But it's no good if you don't know what's going on. So, here goes:


  1. 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 electronical 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.

  2. 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.

  3. 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.

  4. 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.

  5. 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.

  6. 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.

  7. 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.

  8. 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.


A Vision for Patient-Centered Clinical Decisions


Inching Toward the Ideal

Imagining is necessary but not sufficient. Depending on where you sit, the ideal state can seem miles away or insurmountable. I want to get closer to that ideal state without burning myself out. You’re reading this because you care about Informed Decision-Making, Clinical Decision-Making, or Making Health Choices. You are at least ankle deep if not eyeball deep Clinical Decision Support (CDS). So, let’s talk.


Female clinician and patient reviewing EHR record
Using PCCDS, patients and providers discuss and prioritize treatment options.


The Patient-Centered Clinical Decision Support (PCCDS) Learning Network seeks to promote the conversation between patients, care partners, clinicians, IT experts, and researchers to move toward an ideal state in CDS. We realize that deep-rooted obstacles stand in the way of visioning, let alone reaching an ideal state. We also know that success depends on appreciating the business and workflow of medical practices, the challenges and flow of people's lives, and the technology connections. Complicating things further, clinicians and patients and their care partners are diverse characters across the widest possible continuum. Patients’ comfort with their medical surroundings has some but limited relationship to their understanding of medical language and their bodies. Family personalities, dynamics and social circumstances have bewildering variation. Clinicians can range from those who feel, the relationship with my patients is most important to me, to those who feel, just get me through the day, I'm so tired. Likewise, patients and their care partners could range from, I'm driving my own train, to Just tell me.


Female patient and clinician reviewing documentation
Diagnosis and treatment partnerships are the primary goal of PCCDS. 


With your help and participation, we can select, prioritize, and take meaningful steps in a positive direction. Let's take a step – let’s talk.  Do our imaginings ring true? What's missing?  Imagine we can move the dial. What would you do next?

Please use the 'Add a Comment' box below to join the conversation!


Imagine that your patients know their life priorities and their life challenges and can and will communicate them to you.

Imagine that you have a key to the Tower of Babel and can communicate with anyone.

Imagine that you have the latest research at your fingertips so you can have informed conversations with your patient.

Imagine that your patients and caregivers understand that recommended treatments might work. It's an experiment based on pretty good research, your clinical experience and training, and your sensitivity to them.

Imagine that your patients trust you.

Imagine that you and your patients have all the time you need together with no distractions for you or them.

Imagine that your practice runs so efficiently and effectively that most of your face time with patients is spent in relationship building, exam, and problem-solving.

Imagine that your EHR is a partner, not a hand slapper, chiming in with useful information when you need it (and not when you don’t)

Imagine that patients can and do submit corrections to the data in their records and that those corrections can be reviewed and entered quickly.

Imagine that it's easy to track in the EHR how well the actions taken to treat, worked over time using your entries and their entries.

Imagine that the recommendations chosen automatically populate a personal care plan for your patient along with all the other choices you made together about treatment and self-care.

Imagine that they will follow the plan, track progress, and let you know when they don't and why.

Imagine that the up-to-date treatment plan and tracker is shareable in real time with anyone the patient chooses using any EHR or health app.

Patient and Care Partner

Imagine that you have all the information you need to make decisions about your medical treatment including cost of those choices.

Imagine that the information can be shared with your family, friends, and advisors so you are prepared to advocate for yourself and make decisions with your doctor.

Imagine that you can talk about your life's goals and challenges and that your doctor can hear you.

Imagine that all health professionals realize that they are guests in your life.

Imagine that you have time to talk and share with your doctor without distractions.

Imagine that your doctor trusts you to be the expert about you.

Imagine that your doctor helps you understand research and how it applies to you.

Imagine that you have a care partner who goes to doctor visits with you, listens and advocates for you.

Imagine that your health and wellness choices and plans can be found in your EHR.

Imagine that you can correct and update your health data and track your progress in your EHR.

Imagine you have one up-to-date EHR for all settings and providers and you control who has access to it.

Imagine that you have access to medical advice and can get questions answered when you need it, in a manner that you can digest.

Imagine that if you try something and it doesn't work, you can adjust quickly with your health team to try something else.

About this Blog

Patient expertise provides a platform for the PCCDS Learning Network to promote the conversation between patients, care partners, clinicians, IT experts, and researchers to move toward an ideal state in CDS. We realize that deep rooted obstacles stand in the way of visioning, let alone reaching an ideal state. We also know that success depends on appreciating the business and workflow of medical practices, the challenges and flow of people's lives, and the technology connections.


Female patient and clinician reviewing a chest x-ray on a tablet
Clinicians and patients are partners in creating and using patient-centered clinical decision support.


With your help and participation, we can select, prioritize, and take meaningful steps in a positive direction. Let's take a step - let's talk.  Join us.


About this Blogger

   Blogger Danny van Leeuwen
   Blogger Danny van Leeuwen

Danny, an action catalyst empowering people traveling together toward best health, wears many hats in healthcare: patient with Multiple Sclerosis, care partner for several family members’ end-of-life journeys, a nurse for 40 years, an informaticist and a QI leader. As a patient and caregiver activist, Danny focuses on learning what works for people: informed decision-making, patient-centered research, communication at transitions of care & technology supporting solutions created by and for people. Danny serves on the Steering Committee of AHRQ’s Patient-Centered Clinical Decision Support (PCCDS) Learning Network and as patient expert for CDS Connect. He reviews PCORI research funding applications and serves as co-chair of PCORI’s Clinical Effectiveness and Decision Science (CEDS) Advisory Panel. Danny is active in the Society for Participatory Medicine and is editor of their newsletter. He is a technical expert for the CMS-funded Supporting Efficiency and Innovation in the Process of Developing CMS Quality Measures. Danny blogs weekly ( and was recently published in BMJ and JoPM.


Submitted by on Mon, 03/19/2018 - 15:49


Great description of the way things "should" be.  Looking forward to your posts!

Submitted by josheroff@pcor… on Tue, 03/27/2018 - 11:14


Great kick-off to this conversation Danny! Your vision of the future is compelling and urgently needed. Look forward to your leadership in cultivating dialog and action via this blog to help bring it about much sooner than would otherwise be the case.

Submitted by bmiddleton@pco… on Tue, 03/27/2018 - 11:35


Great post and I couldn't agree more -- we are inching forward perceptibly and perhaps we can take a few big strides forward soon. I am encouraged: Open Notes, Apple iPhone EHR app, gradually opening of the EHR platforms, and increasingly shareable knowledge to support informed shared decision-making. Things are different from when I started as a clinician 30+ years ago, and it's more important to me than ever (especially as I occasionally now I'm the patient). Thanks for all you do to make healthcare better. 

Submitted by ifrancis@pcorc… on Tue, 03/27/2018 - 16:16


Hey Danny, great blog post. I'm a nurse too! This weekend I presented my research regarding the use of classical ethical principles to guide mobile health design at a Sigma Theta Tau conference. As a fellow nursing informaticist, I'd be very interested to discuss ethics and technology in the design phase. If you're interested, the article prompting my presentation can be found here:

Thanks for sharing your article. Yes, clinical decision support and ethics. Several items stand out to me:

  • comfort with uncertainty - the variation in patient and clinician comfort with uncertainty is sobering. Reseach findings by their nature are uncertain. Research is the study of what is likely to work for groups of people.  I am not a group of people. How can we increase comfort with communicating uncertainty? (beneficence?)
  • health data accuracy - Patients will tell you that health data, especially across multiple facilities, clinicians, EHRs, and apps are often not accurate nor up-to-date.  There are few infrastructure mechanisms to correct data. ((nonmaleficence) 
  • authorization to share data - Healthcare systems, EHR/app vendors, and social media feel they own patient data. Their business model uses and sells that data without patient consent, notification, or compensation. (autonomy)
  • health literacy - focus on health literacy rather than life literacy emphasizes patients to understand the medical world, rather than the medical world understanding the people's physical environment and social circumstances.(justice, autonomy)

Ethics aligns with trust.  More to come in the blog about trust

Submitted by ifrancis@pcorc… on Fri, 03/30/2018 - 15:00


Unauthorized data sharing and data breach are the most often cited areas of concern, and particularly timely. I agree, informed consent must be obtain prior to sharing a patient's data - even if aggregated into de-identified form. Yet I am sure data sharing and selling is rampant in today's industry without proper consent. Perhaps now that Facebook and other social media platforms are on the hot seat, this issue will come to appropriate attention in the medical world.