Wednesday, August 26, 2015

Patient Centered Research: “Facing ambiguity and touching discovery”

Echo L. Warner MPH
PhD Student, University of Utah College of Nursing

Photo courtesy of the CDC
History of PCR: Healthcare has been informed, historically, by empirical evidence-based medicine. Evidence-based medicine is focused on clinical guidelines, protocols, and best practices that are identified using population based approaches (i.e., the best approach for the biggest group of people) (Romana, 2006).  However, a paradigm shift has occurred over the last few decades as healthcare providers and administrators have begun to realize the integral nature and value of patient centered care. In contrast to evidence-based medicine, patient centered care and research prioritizes the voice of the patient and supports clinical discretion (Romana, 2006). Dr. John Noble first described the need for patient centered research (PCR) in 1989 (Noble, 1989). Noble (1989) described PCR as an approach to discovering new knowledge and identifying strategies to improve the patient experience by engaging patients and clinicians in the study of the social, psychological, and individual factors that influence the healthcare experience (Noble, 1989).

PCORI PCR Focused Funding Announcements
Funds Available
Application Dates
$18 million
9/30/2015
$12 million
11/3/2015
Varies
10/1/2015

Example of PCR:
In an effort to provide the best and most appropriate patient centered care there has become an increasing focus on PCR over the last few decades. In 2010, the Obama administration devised the Patient Centered Outcomes Research Initiative (PCORI), in an effort to allocate funding toward studying what kind of healthcare is most effective for certain patients. PCORI also prioritized four domains of research: improving healthcare systems, communication and dissemination, health care disparities, and accelerating patient-centered and methods research (Sox, 2012). Specifically, the goal of this priority is to develop an informed community of patients, a focus on patient preferences, and development of innovative methodologies that engage and emancipate patient perspectives to improve the healthcare experience (Sox, 2012). A major focus of PCR is patient involvement from conception and design of a study throughout interpretation and dissemination. PCR focuses on questions and outcomes that matter to patients. Currently the PCORI initiative is engaged in funding innovative PCR. Examples of funded PCR studies are described on the PCORI website. In an effort to adhere to their mission of patient centeredness, PCORI also publishes a public blog encompassing a range of topics from new funding announcements to research results (Table 1).  PCORI is one example of the burgeoning new research that is patient-centric and that aims to improve the patient experience from birth through death.

Challenges of PCR: It has yet to be examined whether and how PCR improves upon prior research approaches. In other words, research is needed that measures the effectiveness, cost-efficiency, and ultimately the power of PCR to change patient experiences while still preserving utmost clinical care. That being said, similar to other research methods and frameworks, PCR has its drawbacks. Challenges to conducting PCR include foundational differences between researchers and patients including focusing on outcome metrics that are not prioritized among both groups equally, limited and differing availability and desire to engage in PCR, and language barriers (Perez, 2013). Moreover, unintended consequences of PCR such as unequal power relations between researchers and patients may limit the depth and breadth of PCR. Lastly, the long-term impact of PCR is unknown. Additional research is needed to more fully understand the practical application of PCR and how this type of research approach influences patient care.


Photo courtesy of the CDC
Future Directions: In his TEDx talk at the University of Minnesota, The Future of Patient-Centered Care, Dr. Dave Moen, MD describes his journey from working as an emergency medicine physician to rediscovering the value of patient centered care while caring for victims of domestic violence. Like Dr. Moen, as healthcare professionals and researchers, we are all on a journey to understand the future of patient centered care, and the PCR that will ultimately guide the implementation of this care. In the future, we can undoubtedly learn more by exploring new research methodologies that extend beyond the bounds of evidence-based medicine. In other words, by directly involving patients in PCR, we may be more fully able to improve the patient centered care experience. While the transition from evidence-based medicine to patient centered care represents an evolving change in the way that healthcare providers and patients make decisions, we are still left with unanswered questions about PCR.

References and Additional Recommended Links:

Noble J. Patient-centered Research: Through the Looking Glass in Search of a Paradigm. Journal of General Internal Medicine. 1989;4:555-557.

Perez B, Cummings L, Schrag J, Mead H, Jewers M. Facilitators and Barriers to Providing Patient-Centered Chronic Disease Care to Patient Populations at Risk for Health and Health Care Disparities in Safety Net Settings. America’s Essential Hospitals. 2013.

Romana H. Is Evidence-Based Medicine Patient-Centered and Is Patient-Centered Care Evidence-Based? Health Services Research. 2006;41(1):1-8.

Sox H. The Patient-Centered Outcomes Research Institute Should Focus on High-Impact Problems That Can Be Solved Quickly. Health Affairs. 2012;31(10):2176-2182.




This work is by Echo Warner is licensed under a Creative Commons Attribution 4.0 International License


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