The RISE Value-Based Care Summit: Q&A about patient-centered outcome measures with ICHOM’s Jennifer Bright

Jennifer Bright, president of the International Consortium for Health Outcomes Measurement (ICHOM), will be a featured speaker on the first day of The RISE Value-Based Care Summit.

In this article, Bright talks to RISE about how ICHOM measures align with those developed by Centers for Medicare & Medicaid Services (CMS) and National Committee for Quality Assurance (NCQA), the biggest challenges, success stories, and what she hopes Value-Based Care Summit attendees will take away from her fireside chat. 

Your fireside chat at The RISE Value-Based Care Summit focuses on measuring what matters to patients. ICHOM has published 45 Sets of patient-centered outcomes measures for different conditions and specific patient populations. If my organization is just starting to explore these measures, where should I begin?

Each of the Sets includes several resources, including a summary of the overall Set domains and measures, as well as a detailed resource guide that speaks to the more technical aspects such as the data dictionary and case mix variables. I would also suggest that reviewing the peer-reviewed publication can give a succinct overview of the process and the output of the Sets. These materials can be accessed as PDF documents via our website.

In addition, the mapping of our Sets to common clinical interoperability resources such as HL7 FHIR, SNOMED, LOINC etc. enables speedier and more consistent data collection and extraction. Not only do these enhanced resources facilitate implementation, but their wider use will also improve data quality, further impacting the accuracy and speed in research and real-world evidence development.

More recently, we’ve invested significant time and resource in defining primary subsets, for example in the oncology Sets. This was undertaken to recognize that many entities need to/want to start with implementation of a prioritized group of outcome measures. The Primary Subsets help users identify a starting place to begin and refine their value-based health care progress, while minimizing data collection burden.

In addition to learning about our work and resources, a great first strategy is attending our annual scientific and practice conference. In 2024, we will welcome an international community of researchers, patients, clinical leaders, payment and policy leaders, innovators in medtech and life sciences, and our implementation partners to Amsterdam October 21-23. This conference combines case study learning, workshops on PROMs implementation, discussions about the implication of AI and digital health on outcomes measurement, and opportunity to see hundreds of abstracts that represent implementation efforts around the world.

How do the ICHOM measures align with those developed by CMS and NCQA?

ICHOM Sets focus on the clinical and life quality outcomes (rather than processes of care) and inclusion of patients based on diagnoses (rather than treatment type). Many of the abundant quality measures developed and used, for example by NCQA and even CMS, may include some outcomes, but they remain predominantly process or structural measures.

ICHOM Sets are applicable to a variety of health care systems even if the systems have evidence-based clinical guidelines/typical practices that differ. This focus on outcomes is also what enables innovation in care pathways. By implementing standard measurement approaches, clinical entities can begin to evaluate how differences in timing, order or type of intervention, and other factors may contribute to improvement in patient health, quality of life and functioning.

What have been the biggest challenges for organizations you’ve worked with in implementing the measure Sets?

There are several common challenges including culture, implementation of patient-reported outcomes (PROMs) measurement, concern about the number of measures, and resources, such as technical infrastructure and ability to create data visualization useful to decision makers as well as clinical and patient decision-making.

We’ve heard consistently that starting with prioritized set of outcome measures, defined by local context in terms of health condition prevalence and existing data about outcomes and service utilization can drive early insights that increase clinician buy-in. The cultural commitment to embedding outcomes measurement as a primary driver of change is also a commonly identified element of success. Clinical leadership by itself typically is insufficient without support and investment by C-suite leaders, for example. Collaboration between those clinical leaders, with patient communities and payers, continues to be the best practice. ICHOM case studies, the experience of international leading implementers like Santeon.

ICHOM’s efforts to create primary subsets, harmonize measures across multiple health condition Sets, and to map its entire library to common language and formats that promote interoperability demonstrates our ongoing commitment to implementation and impact for patient health and life quality, as well as the improvement of clinical processes to support workforce satisfaction and optimized resource utilization.

Do you have any success stories you can share?

Over 800 hospitals and health care settings all over the world are using ICHOM Sets— something we track via opt-in reporting to our Implementation Directory. This is evidence that our Sets are practical and adaptable to clinical settings. There are many successes, ranging from established quality improvement initiatives at BCBS Michigan and major health systems like Santeon or Erasmus in the Netherlands, Martini Klinik in Germany, and more recently individual specialty care entities like GluCare in Dubai or CaiPaDi in Mexico, and in clinics in Kenya and Zimbabwe. More detailed cases can be accessed via the ICHOM website, as can our annual abstracts accepted to the ICHOM conference, which are reviewed by an international expert review panel and NEJM Catalyst editors.

ICHOM’s international Implementation Directory and our community networking platform, ICHOM Connect, allows our network to share their progress in implementation and to identify what Sets are in use across the world.

A recent success of note is ICHOM’s collaboration with an international working group to develop our 46th Patient-Centered Outcome Measurement Set addressing obesity. This process has involved clinical, research, and lived experience experts to look at the multidimensional aspects of care for obesity. We anticipate release in June 2024 and already see widespread interest in applied use of the Set, which really addresses cross-cutting cardio-metabolic care and life quality factors important to those living with obesity. ICHOM is hoping to work with an international set of stakeholders to establish a global Learning Collaborative to bring important insights useful to clinicians, patients, and decision-makers about the value of all treatment options and pathways. We work with hospitals, clinics, health systems, payers, and other stakeholders around the world to support implementation and among the biggest areas include Asia (Singapore), Middle East (Dubai, UAE, Saudi Arabia), and Central and South America (Brazil). Europe has been a consistent area of leadership in both thought and practice of value-based health care and we see rising attention to policy-level focus on outcomes measurement, whether in France or in Slovenia. ICHOM works with global organizations like OECD, World Economic Forum, and World Health Organization to advise broad policy leadership and promote alignment of common goals and initiatives.

What do you hope participants attending the Value-Based Summit take away from your presentation?

I often hear that we have enough data in the ecosystem to fundamentally transform health care, and yet we see increasing evidence of ongoing inertia. In short, we’re drowning in data, but we’re not using the right data to guide decisions and measure our efficiency and effectiveness. Patient safety events are on the rise, costs continue to increase, patient health and economic impacts are not improving, and disparities in outcomes persist.

Both ICHOM’s Founders and its committed community of practice worldwide know that the true moonshot change is to focus relentlessly on measuring outcomes, specifically those that are identified by patients and clinicians together as most important. The results of care are measurable and actionable. If we dare to focus on those over the myriad processes that we currently emphasize as proxies for good health care, we know that transformative change in health, in well-being, in equity, and in resource allocation will occur. ICHOM and our partners have growing proof-points at the individual clinical level as well as emerging national trends globally.

About the International Consortium for Health Outcomes Measurement

The International Consortium for Health Outcomes Measurement (ICHOM) is a global non-profit organization dedicated to standardizing the measurement and reporting of patient outcomes across medical conditions.

Health systems around the world are seeing costs rise unsustainably, but without corresponding improvements for patients. This is in part because the processes and funding of health care are not based on what’s most important to patients. ICHOM’s role is to define these elements of both clinical health and quality of life, in a way that allows collection, measurement and comparison of outcomes, and so drives improvements.

This approach is built on the framework developed at Harvard Business School by Professors Michael E. Porter and Elizabeth O. Teisberg. In 2006, Porter and Teisberg wrote the well-known book, Redefining Health Care, which outlines the argument for using health outcomes data to redefine the nature of competition in health care. That book was born of the personal experience of Teisberg and its central theme is that the results of care that matter most to the patient must be the sentinel metric of quality, safety, and policy.

In 2012, Professor Porter, along with Dr. Stefan Larsson of Boston Consulting Group, and Professor Martin Ingvar of the Karolinska Institutet in Stockholm founded ICHOM to develop a practical framework for health care systems to implement outcomes measurement.

Now in its second decade, ICHOM’s primary objectives are to:

• Continue to facilitate consensus-based, rigorous development and maintenance of Sets of standardized patient-centered outcome measures
• Support the implementation of these Sets by health care organizations and practitioners via education, technical support, learning collaboratives, and scientific exchange
• Influence policy that creates the incentives and demand for use of standardized outcomes measurement, including national standards for quality and safety, certification and accreditation, and value-based payment

We accomplish this work in partnership with thousands of clinicians, patients, medical societies, governments, industries, and other stakeholders around the world with similar missions and visions.

The RISE Value-Based Care Summit will take place June 3-4 at the Signia by Hilton Atlanta. Bright’s fireside chat will take place at 9:50 a.m. Monday, June 3. Click here for the entire agenda, roster of speakers, and registration information.