Supported by a grant from the Engelberg Foundation
Health care today is undergoing an unprecedented transition, marked by a new focus on the value of services rather than their volume. While meaningful quality measures are critical to defining health care value, most measures today enumerate and assess what care is provided, but not whether that care affects people in the ways that matter most to them. Research has shown that patients’ and physicians’ perceptions of outcomes differ, and taking into consideration patients’ views of their own health status can lead to more effective interventions.
Why This Is Important
Listening to patients’ perspectives should be an essential part of the health care encounter. But in many instances, the patient’s point of view—on what matters to them, their health goals, their preferred treatment options, and the impact of treatment plans—is not taken fully into account.
This situation is starting to change. Policymakers, payers, providers, and the public all recognize the importance of integrating the patient voice more formally into how care is delivered and how quality is measured. Significant federal investment in patient-reported outcome measures (PROMs) is likely to lead to their broader adoption over time.
Recent Encouraging Steps on the Continued Uptake of PROMs
- With support from the National Institutes of Health, the Patient-Reported Outcomes Measurement Information System (PROMIS) has produced and validated a set of assessment tools that has become the standard for measuring outcomes in federally funded research
- The National Quality Forum, Patient-Centered Outcomes Research Institute, National Committee for Quality Assurance, and other groups are exploring ways that PROMs can be used to measure relevant health outcomes in national reporting and value-based payment programs such as Medicare’s new Merit-based Incentive Payment System
- The Centers for Medicare and Medicaid Services’ bundled payment initiative for hip and knee replacement surgery is now providing financial incentives for PROMs use at baseline and post-surgery
While there is a high level of interest in and growing work on developing tools to collect and use patient reported information, little attention has been paid to the tools’ implementation issues and to their potential value in primary care. UHF’s Quality Institute chose to advance the use of patient-reported outcomes to better engage patients and amplify their voices in the delivery of high-quality primary care in New York.
Supported by a $300,000 grant from The Engelberg Foundation, the PROPC-NY initiative, an 18-month learning collaborative, explored the feasibility of integrating PROMs into primary care. The project brought together three New York City organizations—the Institute for Family Health, Montefiore Health System, and Northwell Health—as well as a faculty of nationally recognized experts in patient engagement and patient reported outcomes. The PROPC-NY initiative had several goals:
- Test the feasibility of routine collection and use of patient-reported outcomes to improve care planning and so that it aligned to patient goals, especially patients facing complex health challenges and difficult socioeconomic circumstances
- Identify best practices related to utilizing patient-reported information—when and how to collect information from patients, how to use responses to create care plans, how to best monitor patients based on patient feedback
- Advance knowledge of PROMs among primary care providers in New York and nationally as the field of patient-reported measurement grows and their use in value-based payment policies spreads
The Bottom Line
PROPC-NY participants were early adopters, willing to test the value of seeking patient-reported information despite numerous obstacles: uncertainty; the dominance of a traditional, well-established, transactional way of practicing medicine; and considerable disincentives to change. The pilot successfully highlighted benefits and challenges and provided a roadmap for continuing this work. The use of PROMs by PROPC-NY participants was largely associated with a positive experience for practice staff and their patients.
Summaries of the PROPC-NY Participants’ Experience
The use of patient-reported outcome questionnaires:
- Focused on the whole patient and the root causes of health concerns.
- Uncovered important information patients would not have brought up freely and that clinicians would otherwise not have been aware of.
- Exposed the interdependencies among team members and helped them work together more effectively.
- Provided a common vocabulary for discussing the nature and source of patient complaints.
- Supported patient involvement in shared care planning.
- Improved team and patient communication, coordination, and consistency in managing care and assessing the impact of interventions.
Achieving the Most from PROs: Special Considerations for Primary Care Practices
Although participants identified numerous benefits, focusing on outcomes was still quite challenging. The PROPC-NY collaborative identified several key lessons than can help practitioners realize the value of PROs in primary care:
- Create a clear outcomes pathway, which includes a series of outcomes and milestones that are made visible to the patient and care team and can be monitored and managed over time.
- Do not lose sight of the story in search of the scores.
- Invest in strong interdisciplinary teams with a special focus on developing effective staff interdependencies and complementary roles.
- Consider adopting a growth mindset in setting goals and outcomes.
- Think “out-of-the practice.” An outcomes-based care model that transcends the clinic visit requires nurturing the community’s trust.
- Close the outcomes loop. Health information technology is important, yet not sufficient. The most critical and often missing link is the patient.
Findings from the PROPC-NY Collaborative are available as a collection of resources and reports that include:
- What’s the Upshot? A report that discusses the implications of the PROPC-NY findings for policy and practice (view pdf)
- Using Patient-Reported Outcomes in Primary Care: An Implementation Guide. A practical toolkit that provides resources to primary care practice teams on how to identify and incorporate patients’ needs and goals. (view pdf)
- A series of three field reports that describe the work of each of the PROPC-NY’s three participating organizations:
- Bolstering Interdisciplinary Teams through the Use of Patient-Reported Outcomes: Findings from Northwell Health System (view pdf)
- Goal Achievement as a Patient Reported Outcome Related to Social Determinants of Health: Findings from the Institute for Family Health (view pdf)
- Stress Level as Patient-Reported Outcome in Safety-Net Primary Care Practice: Findings from Montefiore Health System (view pdf)
Other Resources: Presentations, Webinars, and More
These resources include presentations by experts at PROPC-NY collaborative meetings and webinars. A bibliography of resources used in developing the PROPC-NY toolkit is also available.
Guest Speaker Presentations
Selected readings relevant to the development of the PROPC toolkit. (Included in Using Patient-Reported Outcomes in Primary Care: An Implementation Guide, and available here as a separate, stand-alone pdf.)
Hearing from the Participants
- A short video featuring comments from clinicians who participated in the program. They briefly discuss why they chose to participate in the collaborative, what they learned from their patients, and what benefit they gained as health care professionals.
Ongoing UHF Work on What Matters to Patients