The Value and Future of Patient-Centered Outcomes Research

2014 - 2 April – Patient- and Family-Centered Care
Ruth Kleinpell, PhD, RN, ACNP, FCCM; Timothy G. Buchman, PhD, MD, FACS, MCCM
With patient-centered outcomes taking center stage, two experts discuss the inherent value and future of patient-centered outcomes research.
Healthcare is no longer a disease-centric process. Modern healthcare is patient-centric, where patients (and their families) are active participants in care. This change in focus is part of the National Quality Agenda. A patient-centered process is seen in new programs implemented by the Centers for Medicare and Medicaid as mandated in the Patient Protection and Affordable Care Act.  Improving the patient experience of care is a component of the “Triple Aim” (“Better Health, Better Care, Lower Cost”) of healthcare in the United States.(1) Patient-centered processes of care embrace the idea that patients (and their families) know themselves best and that optimal outcomes arise from integration of patients and families into those processes.(2) For example, patient participation in medical decision making has been associated with improved patient satisfaction and, perhaps more importantly, with outcomes.(3)
Patient-centered outcomes – defined as results of medical care that are important to patients – have taken center stage. Patient-centered outcomes research – investigation that leads to clarity about outcomes that matter to patients and how to efficiently achieve those outcomes – is an important discussion catalyst for patients and their clinicians.(4)  Thus, bedside caregivers must be knowledgeable of the findings of that research. Correspondingly, they must be prepared to use that knowledge to assist patients and families in making informed healthcare decisions.
The Society of Critical Care Medicine (SCCM) principle of “Right Care, Right Now” embraces the notion that patient-centered outcomes research should shape the shared decision of what constitutes “Right Care.” However, the ongoing pressures of bedside care often make it difficult for the clinician to locate reliable sources of evidence to support patients and family members in decision making “Right Now.”
Clinicians are expected to implement the results of outcomes research to help patients and families identify care and treatment preferences.(5) Despite the emphasis on patient-centered care, medical decisions do not always reflect a high level of collaboration with patients and their families.(6) Current practice may not yet be meeting the challenge of ensuring that patient-centered care is consistently implemented.(7)
General Solutions

Several resources are useful for advancing awareness of patient-centered outcomes research and its translation to the bedside. The Patient-Centered Outcomes Research Institute (PCORI) supports studies to advance patient-centered comparative effectiveness research relevant to healthcare decisions confronting patients and their caregivers. It also provides engagement awards to support training and development of activities supporting outcomes research, including disseminating information and encouraging adoption of results ( The National Patient-Centered Clinical Research Network (PCORnet), a national network for conducting clinical outcomes research, is supported by PCORI.
The Patient Reported Outcomes Measurement Information System (PROMIS) provides a number of tools to measure patient-reported outcomes in several domains related to physical, mental and social health for both adults and children ( As part of the National Institutes of Health toolbox, PROMIS includes resources from research sites across the country.
Other organizations, including the National Quality Forum and the National Quality Measures Clearinghouse, are addressing the topic of patient-reported outcomes in a series of initiatives focusing on methodological issues, workshops and recommendations for performance measures.(8,9) The literature on patient-centered outcomes research is also expanding, providing additional resources for clinicians who seek to integrate findings into clinical practice.
Implications for Critical Care

The focus on patient-centered outcomes research is not new in critical care medicine. Recommendations were made in the late 1990s that clinical research in critical care should incorporate patient-assessed outcomes, such as quality of life, functional status, health status, satisfaction, process-of-care measures, and quality of death.(10) Patient-centered outcomes research can help determine how the delivery of healthcare can be improved. This can be done, for example, by alterations to the assembly of teams of health professionals or to the methods of communication.(11) Moreover, due to recent initiatives such as the formation of PCORI, patient-centered outcomes are being incorporated more consistently into clinical research, efforts that will improve that research.
SCCM’s Continuing Focus

Recently, SCCM led a multisociety task force tasked with defining a comprehensive agenda for critical care research.(12) Several key recommendations were patient-centric, including an emphasis on effectively linking translational and clinical research with an implementation plan, and the need to conduct, analyze, and report research focusing on improving the quality and safety of patient care and patient and family outcomes.
Project Dispatch is SCCM’s effort to ensure that patient-centered outcomes research relevant to the critically ill patient and family is transmitted efficiently to the membership. Web resources, webinars and topical presentations at SCCM educational events are all part of that effort.

The value of patient-centered outcomes research lies in insights from patients and their families that can be used to help guide clinical care and ensure that care needs and goals are met. The patient-centric perspective is essential in promoting optimal care. This is most important in critical care where the nature of critical illness often entails uncertainty about prognosis and outcomes.
Patient-centered outcomes research also stimulates further investigation to improve the critical care hospitalization experience. By assessing the impact of interventions, such as family presence, open visitation, family care conferences, and patient and family engagement on committees and in educational initiatives, improvements in critical care and best practices will surely follow.

The future of patient-centered outcomes research holds much potential. As clinicians, we must stay abreast of the research, assess its utility in our patients, and integrate the important advances into our care plans and processes.
1.  Berwick DM, Nolan TW, Whittington J. The triple aim: care, health, and cost. Health Aff (Millwood). 2008;27:759-769.
2.  Law M, Baptiste S, Mills J. Client-centred practice: what does it mean and does it make a difference? Can J Occup Ther. 1995;6:250-257.
3.  Tak HJ, Ruhnke GW, Meltzer DO. Association of patient preferences for participation in decision making with length of stay and costs among hospitalized patients. JAMA Intern Med. 2013;173:1195-1203.
4. Patient-Centered Outcomes Research Institute. Patient-centered outcomes research. November 7, 2013. Accessed February 1, 2014.
5. Agency for Healthcare Research and Quality. Building a national partnership network: advancing patient-centered outcomes research. Accessed January 30, 2014.
6. Fowler FJ, Gerstein SB, Barry JM. How patient centered are medical decisions? Results of a national study. JAMA Intern Med. 2013;173:1215-1221.
7. Epstein RM, Street RL. The values and value of patient-centered care. Ann Fam Med. 2011;9:100-103.
8. National Quality Forum. Patient reported outcomes (PRO) in performance measurement. January 10, 2013. Washington, DC: National Quality Forum; 2013.  Available at: Accessed April 1, 2014.
9. Lohr KN. Quality measures; patient-reported outcomes for quality improvement of clinical practice. May 14, 2012. Accessed February 1, 2014.
10. Curtis JR. The “patient-centered” outcomes of critical care: what are they and how should they be used? New Horiz. 1998;6:26-32. 
11. Brook RH. Can the Patient-Centered Outcomes Research Institute become relevant to controlling medical costs and improving value? JAMA. 2011;306(18):2020-2021.
12. Deutschman CS, Ahrens T, Cairns CG, et al. Multisociety task force for critical care research: key issues and recommendations. Crit Care Med. 2012;40:254-260.

For additional resources, please see:  Wikipedia. Patient centered outcomes. Accessed February 5, 2014.