By Madeline White and Jennifer Stephens
While essential hospitals recognize the value of patient-centered outcomes research (PCOR) and comparative effectiveness research (CER), social risk factors and limited resources can impede the use and development of these tools, new research from Essential Hospitals Institute shows. The findings highlight the value of creating a person-centered culture; call for including diverse, vulnerable patients in research; and share effective tools for engaging vulnerable patients in future research.
Vulnerable Populations Underrepresented in Research
Essential hospitals provide high-acuity care to vulnerable patients and communities, many of which face high poverty rates and other socioeconomic barriers to good health. In communities essential hospitals served in 2017, 23.9 million individuals lived below the federal poverty line, 17.1 million were uninsured, and three-quarters of essential hospitals’ patients were uninsured or covered by Medicaid or Medicare. Additionally, racial and ethnic minorities accounted for 53 percent of inpatient discharges at essential hospitals.
Often underrepresented in medical research, these populations are less likely to have access to evidence as part of informed, shared decision-making with their care provider. With a contract from the Patient-Centered Outcomes Research Institute (PCORI), the Institute investigated the use and development of PCOR and CER approaches in essential hospitals.
Using quantitative, qualitative, and deliberative methods, this research aimed to establish how essential hospitals view the utility of evidence — namely PCOR and CER — in their work, identify current implementation activities, and target future needs. Data collection activities included:
- a literature review;
- interviews with leaders from America’s Essential Hospitals members;
- an electronic survey for chief quality officers and chief medical officers; and
- small group interviews with patients and caregivers.
Additionally, three stakeholder advisory groups contributed to the project planning and implementation and met in person for a deliberation to help shape the project’s final product.
Driving Person-Centered Care at Essential Hospitals
Throughout our research, essential hospital representatives emphasized a deep commitment to providing person-centered care. This approach strives to include patients, families, and caregivers in the care process, focusing on what is most important to the patient during clinical visits and in making treatment decisions. Patients expressed a need for a team-based approach that includes providers working in partnership with patients, enlisting patients in a dialogue, and educating patients to make decisions. Patients, providers, and caregivers alike recognized that creating a hospital culture that recognizes patients’ preferences, challenges, and opinions can improve care quality and health outcomes.
Essential Hospitals Face Barriers to Implementation
While virtually all research participants recognized the value of PCOR and CER, many also were confused by this terminology. Interview and survey results suggest hospitals and clinicians do not differentiate between types of evidence they use in clinical or shared decision-making. Eighty percent of survey respondents reported using evidence at least half of the time as part of clinical and shared decision-making, but less than 30 percent reported using PCOR at least half the time. Almost universally across participant type, evidence — particularly, patient-centered and tailored to the patients’ conditions — was perceived as highly useful, but applying the labels PCOR or CER created greater confusion.
Institute researchers were not surprised to find time and resources constraints pose a major barrier to essential hospitals’ creation of a person-centered culture and evidence-based shared decision-making — essential hospitals operate with an average margin of 1.6 percent, one-fifth that of other U.S. hospitals. Further, nonacademic medical centers struggle to engage in or with PCOR and CER because research expertise tends to be housed within academic centers, excluding some vulnerable populations and other types of hospitals.
No two essential hospitals are the same, and, despite similarities in scope of work, each requires a tailored approach to generate or use research evidence. Besides lack of time and resources, serving a complex patient population impeded using PCOR evidence in treatment plans. Social risk factors, including low health literacy, limited access to health care, limited English proficiency, and comorbidities posed challenges to sharing evidence with patients. While 79 percent of survey respondents acknowledged current PCOR evidence applied to their patient population, several patients perceived a lack of evidence pertaining to their specific condition or co-occurring conditions.
Creating Resources for Essential Hospitals
Responding to the need for a tailored strategy, the Institute developed a road map: Integrating Person-Centered Care & Evidence-Based Research. The road map aims to encourage and facilitate the integration of person-centered care and evidence-based research while considering the unique socioeconomic and chronic conditions essential hospitals’ patients and communities face. While the road map serves as a resource for integrating a person-centered culture, greater investment in tools and resources is needed to include more diverse patients with complex care needs in research.
Hospital leaders, providers, and patients highly value the development of PCOR pertaining to their needs and the use of evidence as part of a patient-centered care approach. But gaps exist in engaging vulnerable populations with complex care needs in research and shared decision-making.
Essential hospitals seek additional resources that recognize the complex health and social needs of the vulnerable populations they serve while considering organizational constraints. Evidence and information should continue to be created and disseminated to further establish patient-centered cultures in hospitals serving diverse patients. When hospital care is person-centered and integrates the patient in all aspects, the provider, patient, hospital, and community-at-large benefit.