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Improving the Outcomes That Matter Most to Patients

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Patient-reported outcomes (PROs) and patient-reported outcome measures (PROMs) have been used in healthcare since the 1970s. But the industry hasn’t had meaningful, consistent PROs and PROMs definitions until ICHOM developed one. ICHOM, a pioneer in outcomes measurement and improvement, demonstrates that healthcare organizations focused on improving patient outcomes that patients actually care about are the ones most likely to transform healthcare.

PROs and PROMs complement clinical indicators in understanding the quality of healthcare a team is delivering. For example, an improvement program for prostate cancer patients that only focuses on improving blood loss or length of stay in the hospital completely misses a patient’s biggest fears: will they need to wear pads for the rest of their life? Will their relationship with their partner be the same as it was?

By focusing on outcomes that matter most to patients, health systems will be more successful at improving outcomes. ICHOM describes five strategies for getting started with PROs and PROMs:

Find the Believers (Identify Clinician Champions)
Organize a Cross-Functional Team (with Appropriate Governance)
Invest Time and Resources
Celebrate Progress Along the Way
Use Early Successes to Scale and Spread

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Improving the Outcomes That Matter Most to Patients

  1. 1. Improving the Outcomes That Matter Most to Patients ̶ Dr. Caleb Stowell and Dr. Sara Sprinkhuizen
  2. 2. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. Patient Outcome Measurement Patient-reported outcomes (PROs) and patient-reported outcome measures (PROMs) aren’t new to the healthcare industry. What is new is the pioneering work the International Consortium for Health Outcomes Measurement (ICHOM) is doing to help healthcare organizations worldwide understand and use PROs and PROMs to improve patient outcomes.
  3. 3. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. Patient Outcome Measurement ICHOM is a research–based, nonprofit organization with a mission to unlock the potential of value-based healthcare. The core of its work is to define and drive adoption of international standards on the outcomes—by condition—that really matter to patients. CHOM has already identified standard sets for 13 conditions and is currently working with innovative providers and health systems globally to support the adoption of these standard sets. Everyone’s talking about value- based health care, but what defines value? ICHOM was founded to answer that question.” CALEB STOWELL, MD VP of Standardization and Business Development
  4. 4. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. Patient Outcome Measurement The philosophy behind using PROs and PROMs is to understand patients’ health from their perspective. Traditionally, health systems and clinicians have focused on measuring concrete clinical outcomes because they are much easier to measure— survival is a simple, dichotomous event. But for most of medicine, the question is no longer whether someone will survive, but how their life will be after treatment.” - Caleb Stowell, MD
  5. 5. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. Patient Outcome Measurement In an industry that ranks health systems according to clinical and process indicators (e.g., mortality and infection rates), ICHOM is proving that healthcare organizations that collect and measure PROs can learn and improve, demonstrate superior outcomes, attract patients, earn respect, and become leaders among their peers.
  6. 6. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. What Are PROs and PROMs? Patient-Reported Outcome (PRO) The acronym “PRO” has been an umbrella term for decades; it’s included patient satisfaction, productivity assessments, and anything else patient reported. The resulting definition was broad— too broad to be useful. ICHOM’s PRO definition is based on Wilson and Cleary’s work, which divides PROs into three main categories: Symptom burden Functional impact Health-related quality of life
  7. 7. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. What Are PROs and PROMs? Patient-Reported Outcome (PRO) ICHOM reaffirmed this definition because it is clear and specific and distinguishes between measures of patients’ health versus the experience of their care. ICHOM Project Leader, Dr. Sara Sprinkhuizen, has conducted extensive PROs and PROMs research and is helping to develop a framework for global healthcare data collection and analysis. Dr. Sara Sprinkhuizen Project Leader An outcome is a result or end state; anything measuring an intermediate state isn’t an outcome.”
  8. 8. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. What Are PROs and PROMs? Patient-Reported Outcome Measure (PROM) A patient-reported outcome measure (PROM) is any instrument, scale, or single-item measure used to assess the PRO concept as perceived by the patient, obtained by directly asking the patient to self-report. PROMs include any method used to collect patient input, from diaries and event logs, to one-item or multi-item multi-domain scales.
  9. 9. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. What Are PROs and PROMs? Patient-Reported Outcome Measure (PROM) PROs and PROMs have been used in healthcare for decades, but primarily in research settings. The Medical Outcome Study in the 1970s measured the impact of care patterns on outcomes for patients with chronic medical conditions and depression. The study used a 116-item survey to assess quality of life including physical, mental, and general health.
  10. 10. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. What Are PROs and PROMs? Patient-Reported Outcome Measure (PROM) Since the 1970s, hundreds of PROMs have been developed across nearly the full breadth of medicine, but for the most part, their use has remained narrow. However, as healthcare consumers become more interested in understanding and acting on their own health data, and clinicians demand analytics to understand the health of their patient populations, the demand for PROMs has surged.
  11. 11. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. What Are PROs and PROMs? Improving Patient Outcomes with PROs and PROMs PROs and PROMs help healthcare organizations answer several important questions, including: 1. How is our patient doing today? 2. How can we predict how our patients will respond to treatments? 3. What has the impact been of our team’s intervention on our patient’s health over time?
  12. 12. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. What Are PROs and PROMs? Improving Patient Outcomes with PROs and PROMs In their simplest form, PROMs are a mechanism for communicating how patients are actually doing. As Dr. Stowell explains: It’s not that clinicians don’t care about patients’ quality of life. They do. They simply don’t ask them about these things in a structured, reliable way.” - Caleb Stowell, MD
  13. 13. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. What Are PROs and PROMs? Improving Patient Outcomes with PROs and PROMs Dr. Stowell cites the work being done at Stanford Health Care, which participated in developing, and is measuring outcomes consistent with, the ICHOM Standard Set for Low Back Pain: We did a great film about their care delivery process with this kind of data in place, including a patient interview. I loved the quote from one of their neurosurgeons…”
  14. 14. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. What Are PROs and PROMs? Improving Patient Outcomes with PROs and PROMs As a clinician, when you come in to see the patient you have the [PROMs] information immediately available. This benefits the patient by engaging them prior to the consultation. They are already thinking about the outcomes that matter to them, and this cue is being provided at exactly the right time.” John Ratliff, MD, FACS Spine neurosurgeon
  15. 15. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. What Are PROs and PROMs? Improving Patient Outcomes with PROs and PROMs Dr. Ratliff’s patient follows with: I like that when the doctor enters the room, he is already familiar with my condition. It makes me feel more connected to my healthcare.’”
  16. 16. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. What Are PROs and PROMs? Improving Patient Outcomes with PROs and PROMs But PROMs can do more than just communicate; they can also predict a patient’s health status. Boston-based Partners HealthCare uses PROMs data for patients with suspected coronary artery disease to predict their likely benefit from coronary intervention. Such predictive models have helped Partners avoid costly interventions when patients don’t stand to benefit.
  17. 17. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. What Are PROs and PROMs? Most importantly, PROMs can complement clinical indicators in understanding the quality of healthcare a team is delivering. Take prostate cancer for example, in which the most common treatment, prostatectomy, can cause high rates of incontinence and erectile dysfunction after the surgery. An improvement program that only focuses on improving blood loss or length of stay misses a patient’s biggest fears ̶ Will they need to wear pads for the rest of their life? What about the relationship with their partner?
  18. 18. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. What Are PROs and PROMs? Dr. Stowell references the work of the Martini Klinik (a high volume prostate cancer center in Germany) featured in the documentary Measured Outcomes: A Future View of Value-Based Healthcare: This is a care team that defines its outcomes around the patient and works every day to improve their technique to deliver a better result. Their rates of incontinence and erectile dysfunction are now far below anything previously thought possible.”
  19. 19. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. Overcoming Barriers to PROs and PROMs Adoption PROMs are getting industry-wide attention for their ability to contribute to a more holistic picture of a patient’s health, but there are still barriers to adoption – barriers ICHOM is intent on helping healthcare organizations overcome.
  20. 20. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. Overcoming Barriers to PROs and PROMs Adoption Overcoming Content Concerns At a first pass, clinicians can have a hard time trusting PROMs. Doctors like measurements that are physiological: blood pressure, lung function, and blood counts. PROMs are psychological; they are inherently subjective. But they have to be that way—how else can we assess how the patient perceives his or her illness?” - Caleb Stowell, MD
  21. 21. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. Overcoming Barriers to PROs and PROMs Adoption Overcoming Content Concerns According to Dr. Sprinkhuizen, the healthcare industry tends to underestimate how precise PROMs tools are, unaware of the science and methodology that goes into their development. PROMs should be taken as seriously as any other medical instrument. They are scientifically and linguistically validated instruments.”
  22. 22. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. This is the core of what we are trying to do in the field: give guidance and support harmonization in what is, today, a very fragmented approach to outcomes measurement.” Overcoming Barriers to PROs and PROMs Adoption Overcoming Content Concerns When faced with a choice between dozens of tools, health systems’ lack of understanding about the most appropriate tools for their targeted outcomes and improvement goals can stifle their efforts; but selecting the right tool is essential for PROMs to be clinically interpretable and actionable. As Dr. Stowell explains:
  23. 23. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. Choosing the best PROM in a given field is always the single biggest discussion point in any Working Group.” - Dr. Sara Sprinkhuizen Overcoming Barriers to PROs and PROMs Adoption Overcoming Content Concerns ICHOM develops its recommendations, including PROM tools, through deep engagement with expert groups over a nearly year-long process. ICHOM recommendations are available to the public and published in academic journals.
  24. 24. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. Overcoming Barriers to PROs and PROMs Adoption Overcoming Operational Concerns In a field that still utilizes paper questionnaires, technology gives healthcare organizations a much better channel for collecting PROs. Instead of administering a hard copy survey, clinicians can reach out to patients by sending a quick email or message. Dr. Sprinkhuizen believes technological advancements mean better access—for patients and providers.
  25. 25. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. Getting Started with PROs and PROMs: 5 Strategies Despite the many barriers to PROs and PROMs adoption, most health systems agree PROs and PROMs are important. But getting started can feel like a high hurdle. Based on ICHOM’s experience working alongside many healthcare leaders to measure and improve outcomes, they’ve identified five strategies for organizations eager to get started.
  26. 26. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. Getting Started with PROs and PROMs: 5 Strategies Identify clinician champions who want to know their outcomes and value transparency. Many of these champions are already collecting outcomes data and under-stand the value in using PROs and PROMs. These champions can help organizations generate momentum and overcome challenges. #1: Find the Believers
  27. 27. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. Getting Started with PROs and PROMs: 5 Strategies Sustainable outcomes measurement depends on the engagement of a broad range of organizational functions. Appoint a team leader, define deadlines for key milestones, and hold the team accountable for delivering on them. #2: Organize a Cross-Functional Team
  28. 28. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. Getting Started with PROs and PROMs: 5 Strategies Although outcomes measurement is critical to long-term success, it’s a long-term investment that won’t pay off immediately. Engage senior leadership to unite organizational functions and commit resources in pursuit of the long-term benefits. #3: Invest Time and Resources
  29. 29. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. Getting Started with PROs and PROMs: 5 Strategies Outcomes measurement programs take time; make sure to celebrate progress along the way to keep stakeholders engaged and maintain momentum. #4: Celebrate Progress Along the Way
  30. 30. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. Getting Started with PROs and PROMs: 5 Strategies Clinicians and frontline staff respond to inspiration from their colleagues, so share success stories to spur interest throughout the organization. ICHOM’s Harvard Business Review article, What Health Care Leaders Need to Do to Improve Value for Patients provides additional information about these five strategies, including specific examples of each strategy in action. #5: Use Early Successes to Scale and Spread
  31. 31. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. Measure and Deliver Outcomes Patients Care About Health systems today face a dizzying array of measures; but how many of those measures are actually useful? If we aren’t measuring and delivering the outcomes our patients actually care about, what use is all of our measurement activity?” CALEB STOWELL, MD ICHOM VP of Standardization and Business Development
  32. 32. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. Measure and Deliver Outcomes Patients Care About It appears that an increasing number of organizations are of this same mindset. For example, the Core Quality Measures Collaborative—an initiative that bridges public and private payers—recently stated its ambition to reduce, refine, and relate quality measures to focus on “measures that matter.” “It’s pretty clear that value-based health care is coming. The question is, do you want to get ahead of it?” - Caleb Stowell, MD
  33. 33. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. Learn More about ICHOM’s Outcomes Work Healthcare leaders interested in learning more about ICHOM’s work to define standards, benchmark on outcomes, and establish outcomes transparency, can visit the ICHOM website and read Standardizing Patient Outcomes Measurement, a recently published perspective in the New England Journal of Medicine.
  34. 34. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. Learn More about ICHOM’s Outcomes Work For healthcare leaders interested in being a part of the global value-based care and outcomes improvement conversation, the Annual ICHOM Conference brings together healthcare leaders throughout the world to discuss the “why” and “how” of outcomes measurement.
  35. 35. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. For more information: “This book is a fantastic piece of work” – Robert Lindeman MD, FAAP, Chief Physician Quality Officer
  36. 36. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. More about this topic Michael Porter and Others Show How to Deliver Better Care in Value-based Healthcare Documentary Paul Horstmeier, Senior Vice President Improving Healthcare Outcomes: Keep the Triple Aim in Mind Michael Barton, Engagement Executive, VP; Tracy Vayo, Director, Knowledge Development Kathleen Merkley, Clinical Improvement, VP Patient Engagement And Outcomes Improvement from the Patient’s Perspective Steve Catmull 6 Steps for Implementing Successful Performance Improvement Initiatives in Healthcare Bobbi Brown, Financial Engagement, VP; Leslie Falk, Customer Engagement, VP Quality Data is Essential for Doctors Concerned with Patient Engagement Dr. Ed Corbett, Deputy CMO Link to original article for a more in-depth discussion. Improving the Outcomes That Matter Most to Patients
  37. 37. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. Caleb joined ICHOM after spending two years as a research associate and then as a senior health care researcher with Professor Michael Porter at the Institute for Strategy and Competitiveness (ISC) at Harvard Business School. During this time, he contributed to academic articles, case studies, and presentations promoting a value-based approach to health care delivery in the U.S. and abroad. More recently, he served as the ISC’s primary liaison in launching ICHOM. In November 2012, he joined ICHOM full-time to lead its global outcome standardization efforts. Caleb received his M.D. from Harvard Medical School. Other Clinical Quality Improvement Resources Click to read additional information at www.healthcatalyst.com CALEB STOWELL, MD VP of Standardization and Business Development c.stowell@ichom.org
  38. 38. © 2016 Health Catalyst Proprietary. Feel free to share but we would appreciate a Health Catalyst citation. Dr. Sara Sprinkhuizen Project Leader s.sprinkhuizen@ichom.org Sara is a Project Leader at ICHOM, where she has led development of the Stroke and Macular Degeneration Standard Sets, a large part of which involved researching patient-reported outcomes measures. Additionally, she has been involved in developing a framework for global health care data collection and analysis. Prior to joining ICHOM, Sara worked as a postdoctoral researcher for Harvard Medical School and Massachusetts General Hospital in Boston, developing MRI scanning techniques. Sara holds a PhD in MRI physics from Utrecht University. Other Clinical Quality Improvement Resources Click to read additional information at www.healthcatalyst.com

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