When employers encourage the use of particular provider organizations — whether through direct contracting, preferred network designations, or consumer navigation tools — they look for rigorous outcomes measures. In light of increasing interest in addressing health equity, these purchasers expect to see evidence of provider efforts to reduce variations in outcomes associated with factors such as race, ethnicity, language, culture, and community structure. In responding to purchasers, providers have an opportunity to develop patient-reported outcome measures in five ways that may advance health equity in the workforce and community: (1) to assess pretreatment differences, (2) to improve patient-provider interactions, (3) to inform shared decision-making, (4) to demonstrate accountability for equitable health outcomes, and (5) to ensure representative engagement in clinical trials and research.
Next to patients and their families, the organizations that purchase health care — employers, government agencies, labor unions — have the strongest interest in ensuring that health care services lead to improved functioning and well-being. Purchasers devote substantial resources to help their workforce achieve optimal health — through medical benefits, well-being programs, and a variety of wraparound services. With the growing diversity of the United States population, employers are challenged to ensure that every employee gets the care and services they need in ways that recognize and respond to variations in language, culture, and community structure. Generally, a provider’s employer partners have the same diversity in their workforce as in the community as a whole. As employers increasingly prioritize diversity, equity, and inclusion as central tenets to their human resource strategies, they expect the same from their health care partners.
Employers are increasingly contracting directly with provider organizations, working with carve-out vendors or health plans to identify centers of excellence, and asking for more rigorous quality outcomes measures.1 Now, with growing recognition of disparities in quality of care and health outcomes, employers also want to see quality reporting that addresses provider efforts to reduce variations in outcomes. To some degree, this need can be addressed through stratified reports of existing quality metrics — breaking down screening, testing, or utilization rates by race or primary language, for instance. But analysis of specific process metrics (e.g., cancer screening rates) will rarely capture the spectrum of factors that may affect outcomes. Many provider organizations are developing expansive programs to address the social factors that may affect health and function — in housing, social services, or food security, for example. But do these strategies and investments result in better health outcomes for the at-risk population?
Patient-reported outcome measures (PROMs) provide an essential mechanism for assessing the effect of pluralistic medical and social strategies intended to improve health. PROMs allow the provider to capture information directly from patients about their experience of health and illness, and to better understand the health status of a population. These measures provide a platform to unify the health system’s ability to understand its patients’ diverse voices and its success at improving their health outcomes.
Some leading employers have encouraged their health system partners to introduce PROMs across the enterprise, integrate patient-reported data into the electronic health record (EHR) and clinical feedback systems, share results with its board and community, hold itself accountable for reducing disparities in outcomes, and demonstrate a commitment to engage with and listen to its patients. For example, the Washington State Health Care Authority, which provides health coverage to approximately 300,000 state employees and 150,000 public school employees, implemented the Bree Collaborative criteria in choosing its Centers of Excellence for total joint replacement. Prominent among the quality criteria are preoperative measurement of pain and function PROMs to assist with patient selection and determine the appropriate care plan, and postoperative repeat measurements to evaluate treatment effectiveness.2 Similarly, the Employers Centers of Excellence Network — which supported direct contracting by large purchasers (including Walmart and Lowes) with select providers of spine surgery, cancer care, and joint replacement — required patient-reported outcome (PRO) collection.3
As employers increasingly prioritize diversity, equity, and inclusion as central tenets to their human resource strategies, they expect the same from their health care partners.
The Purchaser Business Group on Health (PBGH) is a nonprofit coalition representing nearly 40 private employers and public entities across the United States that collectively spend $350 billion annually purchasing health care services for more than 21 million employees and their families. Through its California Quality Collaborative (CQC), PBGH is working closely with the California Public Employees’ Retirement System (CalPERS), Covered California (the state’s health insurance benefit exchange), and other purchasers, in implementing its Advanced Primary Care Measure Set, which requires longitudinal collection of PHQ-9 screening and remission data.
Building on these experiences, we find that purchasers see five opportunities for providers to deploy PROMs that may improve health equity: (1) to assess pretreatment differences, (2) to improve patient-provider interactions, (3) to inform shared decision-making, (4) to demonstrate accountability for equitable health outcomes, and (5) to ensure representative engagement in clinical trials and research.
1. Assess Pretreatment Differences
PROMs have revealed systematic variations in the perceived symptom burden of targeted subgroups prior to receiving treatment.4-6 Providers can implement routine PROMs collection at initial diagnosis to understand disparities in health status prior to receiving services. These data can guide efforts to reduce physician, financial, or cultural barriers to diagnosis or adjust treatment and patient education protocols to mitigate pretreatment health status deficits.
Perinatal depression (PND), for example, is characterized by a major depressive episode during pregnancy and the first postpartum year, and the incidence of PND is significantly higher among Latina and Black women in the United States.7,8 Maternal health is a high priority for employers because women make up nearly 50% of the workforce and approximately 70% of working women will become mothers during their careers.9 Yet, the incidence of screening and diagnosis is particularly low among Latina and Black women despite increased rates of economic and psychosocial stressors that increase their risk of PND. Therefore, increased efforts to improve screening and diagnosis of PND is an essential strategy for addressing disparities and improving the health of the workforce.
2. Improve Patient-Provider Interactions
Patients within some ethnic and racial groups, particularly among those whose primary language is not English, are more likely to report that their needs are not being met and to rate less favorably their access to care, communications with doctors, and interactions with staff.10 PROMs empower patients to provide quantifiable, personal health status information that can counteract implicit bias that might otherwise influence the provider’s assessment of the patient’s symptoms or health; in addition, the method by which patients may provide such information can also have an impact on information available to providers.11 Indeed, increased use of telehealth modalities has differentially affected non–English speaking and low-income groups.11,12 PROMs, coupled with patient experience measures, have shown that difficulties in patient-provider communication across racial, language, and ethnic differences can lead to poorer health outcomes. These disparities may be corrected through active measures, including matching patients with providers familiar with their cultural background.10,13
Increased efforts to improve screening and diagnosis of PND is an essential strategy for addressing disparities and improving the health of the workforce.
3. Inform Shared Decision-Making
PROMs have shown that some groups make different treatment choices due to cultural norms or expectations, leading to poorer health outcomes. PROMs data can characterize expected outcomes for different groups of patients and be used to help patients make treatment decisions most likely to address their goals and circumstances.14 A variety of methods have been used to share expected outcome information with patients, and these methods, too, can be optimized based on their likely effectiveness with different populations.15-19
4. Demonstrate Accountability for Equitable Health Outcomes
PROM tools are sensitive to disparities in outcomes and could be used to monitor circumstances where discrepancies occur related to race.20-22 Measuring patient-reported outcomes can contribute to more consistent symptom management and, ultimately, fewer disparities in care experience. With routine feedback of PROMs from affected groups, providers can make changes to workflow, shared decision-making, clinical decisions, provision of services, and resources to reduce disparate outcomes. Patient-reported outcomes can inform whether all patients, inclusive of and regardless of social determinants of health, are receiving the care that they need to achieve equitable outcomes. More useful reporting depends upon capture of race, ethnicity, income, and language data; capture of population-wide or large sample sets; and presentation of outcome data stratified by key subgroups rather than risk-adjusted for demographic variables.23
5. Ensure Representative Engagement in Clinical Trials and Research
Regulators look to PROMs in clinical trials as part of their assessment of the effectiveness of new therapies.24 Uneven participation of diverse populations in completing PROMs can lead to delayed recognition of treatment toxicity and inaccurate understanding of new treatments’ outcomes.25,26
Today, the best way to meet all five of these objectives is by building an enterprise infrastructure for systematically and comprehensively capturing patients’ voices. Health systems such as NYU Langone,27 Montefiore Medical Center, and UCLA have made changes to office workflow, EHR functionality, mobile platforms, and clinical dashboards at the enterprise level. MemorialCare Medical Group in southern California, for example, leverages the patient portal pre-visit electronic check-in process to screen for depression using the patient health questionnaire (PHQ). When the patient arrives for the appointment, the practice can view the results in the EHR. UCLA Health has adopted an enterprise-wide operational standard in which all primary care patients are screened for depression at least annually. EHR tools enable easy administration of depression screening by clinical staff and patient completion of the PHQ on their own devices. Recognizing the varying levels of access and comfort with electronic portal use among patients, UCLA has also implemented an alternative paper-based workflow, which minimizes the care inequity that can be inadvertently created by reliance on electronic portals.
More useful reporting depends upon capture of race, ethnicity, income, and language data; capture of population-wide or large sample sets; and presentation of outcome data stratified by key subgroups rather than risk-adjusted for demographic variables.
Montefiore Health System has integrated PRO screening results into EHR rooming note templates so that providers are prompted to review completed patient-reported surveys (whether done via the patient portal or in the waiting room). The five-item screen includes the PHQ-2, Generalized Anxiety Disorder screener (GAD-2), and one National Institute on Alcohol Abuse and Alcoholism (NIAAA) alcohol use question. If the patient scores positive on any of the subscale screens, the full scale populates into the EHR note for completion. Montefiore also developed workflows with scripts and follow-up algorithms based on patient responses for practices to follow. Both UCLA and Montefiore have developed clinical dashboards that allow clinic managers to track staff screening performance and to track patient outcomes over time.
While some providers have expressed concerns about using PRO instruments for patients with low literacy levels, many surveys have been designed and tested for reading levels from 7th to 9th grade. The use of visual scales and deployment of PRO questionnaires on a smartphone app also have the potential of mitigating differences in reading comprehension or education. Additionally, adoption of standard language and interview protocols can support collection of comparable information by clinicians and medical office staff.
Collectively, these changes create an ecosystem in which each decentralized clinical program can implement PROMs appropriate to its population and priorities with less burden on staff and lower marginal cost. With this platform in place, clinicians and managers can recognize variations in health status and outcomes for populations of interest, diagnose the causes of those variations, and monitor the effects of corrective actions. This ability to capture and apply all patients’ reported experience of illness and health is the foundation for addressing health disparities.
We and our PBGH employer/purchaser members encourage provider partners to:
Affirm their commitment to listening to the voices of all patients and developing programs that demonstrably address recognized variations in culture, language, and norms
Build infrastructure to capture patient voice and integrate PRO information into EHR and dashboards, including through standardized outcome metrics and shared decision-making practices
Share aggregate outcomes performance data with clinical and system leadership and with the wider community, including employers, and monitor reductions in disparities over time
Ultimately, shifting the U.S. health care system to increase value will require mechanisms to understand the health outcomes most important to the nation — which in turn means having the capacity to listen to every segment of our society and to each person in their own context.
David Lansky is employed at Purchaser Business Group on Health and has received funding for PROMs work from the Centers for Medicare & Medicaid Services, Amgen, and Bristol Myers Squibb. Rachel Brodie is employed at Purchaser Business Group on Health and has received funding for PROMs work from the Centers for Medicare & Medicaid Services, Amgen, and Bristol Myers Squibb.
Mulvany C. Business Group on Health's Annual Survey: Large Employers Ready to Take the Reins on Healthcare Cost. Healthcare Financial Management Association. September 2, 2020. Accessed August 1, 2022. https://www.hfma.org/topics/payment-reimbursement-and-managed-care/article/business-group-on-health-s-annual-survey--large-employers-ready-.html.
Total Knee and Total Hip Replacement Bundle and Warranty. Robert Bree Collaborative. Accountable Payment Models Workgroup. Appendix C. Adopted November 15, 2017. Revised July 17, 2018. Accessed June 16, 2022. https://www.qualityhealth.org/bree/wp-content/uploads/sites/8/2018/07/TKRTHR-Bundle-Warranty-Final-Updated-072018.pdf.
Slotkin JR, Ross OA, Coleman MR, Ryu J. Why GE, Boeing, Lowe’s, and Walmart Are Directly Buying Health Care for Employees. Harv Bus Rev. June 8, 2017. Accessed August 1, 2022. https://hbr.org/2017/06/why-ge-boeing-lowes-and-walmart-are-directly-buying-health-care-for-employees.
Bulls HW, Chang P-H, Brownstein NC, et al. Patient-reported symptom burden in routine oncology care: examining racial and ethnic disparities. Cancer Rep (Hoboken).2022;5:e1478. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8955049/.
Hu X, Kaplan C, Stepanski E, et al. Differences by race in patient-reported symptoms during chemotherapy among women with early-stage, hormone receptor-positive breast cancer. J Clin Oncol 2021;39:6528-6528 https://ascopubs.org/doi/abs/10.1200/JCO.2021.39.15_suppl.6528.
Milani CJ, Rundell SD, Jarvik JG, et al. Associations of race and ethnicity with patient-reported outcomes and health care utilization among older adults initiating a new episode of care for back pain. Spine 2018;43:1007-1017 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5972040/.
Lara-Cinisomo S, Clark CT, and Wood J. Increasing diagnosis and treatment of perinatal depression in Latinas and African American women: addressing stigma is not enough. Womens Health Issues 2018;28:201-204 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6038800/pdf/nihms976817.pdf.
Laughlin L. Maternity Leave and Employment Patterns of First-Time Mothers: 1961-2008. United States Census Bureau. Report Number P70-128. October 2011. Accessed August 1, 2022. https://www.census.gov/library/publications/2011/demo/p70-128.html.
Okunrintemi V, Salami J, Valero-Elizondo J, et al. Abstract 170: Racial disparities and patient reported healthcare experience among adults with atherosclerotic cardiovascular disease. Circ Cardiovasc Qual Outcomes 2018;11:A170 https://www.ahajournals.org/doi/10.1161/circoutcomes.11.suppl_1.170.
Sisodia RC, Rodriguez JA, and Sequist TD. Digital disparities: lessons learned from a patient reported outcomes program during the COVID-19 pandemic. J Am Med Inform Assoc 2021;28:2265-2268 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8344913/.
Carleton KE, Patel UB, Stein D, Mou D, Mallow A, and Blackmore MA. Enhancing the scalability of the collaborative care model for depression using mobile technology. Transl Behav Med 2020;10:573-579 https://academic.oup.com/tbm/article-abstract/10/3/573/5885018.
Butler SS, Winkfield KM, Ahn C, et al. Racial disparities in patient-reported measures of physician cultural competency among cancer survivors in the United States. JAMA Oncol 2020;6:152-154 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6824328/.
Lordon RJ, Mikles SP, Kneale L, et al. How patient-generated health data and patient-reported outcomes affect patient-clinician relationships: A systematic review. Health Informatics J 2020;26:2689-2706 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8986320/.
Berlin NL, Momoh AO, Qi J, et al. Racial and ethnic variations in one-year clinical and patient-reported outcomes following breast reconstruction. Am J Surg 2017;214:312-317 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5533638/.
Reeder-Hayes KE, Troester MA, and Wheeler SB. Adherence to endocrine therapy and racial outcome disparities in breast cancer. Oncologist 2021;26:910-915 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8571754/.
Sørensen NL, Hammeken LH, Thomsen JL, and Ehlers LH. Implementing patient-reported outcomes in clinical decision-making within knee and hip osteoarthritis: an explorative review. BMC Musculoskelet Disord 2019;20:230 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6525425/.
Virji AZ, Brennan CW, Skrabonja L, et al. Patients Like You: How Machine Learning Can Be Used as a Shared Decision-Making Tool to Improve Care. NEJM Catalyst. October 5, 2021. Accessed June 16, 2022. https://catalyst.nejm.org/doi/full/10.1056/CAT.21.0043.
Damman OC, Jani A, de Jong BA, et al. The use of PROMs and shared decision-making in medical encounters with patients: An opportunity to deliver value-based health care to patients. J Eval Clin Pract 2020;26:524-540 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7155090/.
Elsamadicy AA, Kemeny H, Adogwa O, et al. Influence of racial disparities on patient-reported satisfaction and short- and long-term perception of health status after elective lumbar spine surgery. J Neurosurg Spine 2018;29:40-45 https://thejns.org/spine/view/journals/j-neurosurg-spine/29/1/article-p40.xml.
Tyson MD, Alvarez J, Koyama T, et al. Racial variation in patient-reported outcomes following treatment for localized prostate cancer: results from the CEASAR study. Eur Urol 2017;72:307-314 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5413424/.
Wilkins CH, Friedman EC, Churchwell AL, et al. A systems approach to addressing Covid-19 health inequities. NEJM Catal Innov Care Deliv 2021;2(1): https://catalyst.nejm.org/doi/full/10.1056/CAT.20.0374.
Chapman CH. How Patients Lose Their Own Voices: Disparities in Patient-Reported Outcome Capture in Clinical Trials. Cancer Therapy Advisor. August 7, 2020. Accessed August 1, 2022. https://www.cancertherapyadvisor.com/home/cancer-topics/general-oncology/healthcare-disparities-how-patients-lose-their-voice-racism-clinical-trials/.
How Are Diversity and Inclusiveness Considered in PROM Development and Collection? Heartbeat. August 20, 2021. Accessed August 1, 2022. https://heartbeat-med.com/resources/how-are-diversity-and-inclusiveness-considered-in-prom-development-and-collection/.
Gold HT, Karia RJ, Link A, et al. Implementation and early adaptation of patient-reported outcome measures into an electronic health record: A technical report. Health Informatics J 2020;26:129-140 https://journals.sagepub.com/doi/10.1177/1460458218813710.
NEJM Catalyst Innovations in Care Delivery
August 9, 2022
Copyright ©2022 Massachusetts Medical Society.
Published in issue: July 1, 2022
Published online: August 9, 2022
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