Showing posts with label patient-centered care. Show all posts
Showing posts with label patient-centered care. Show all posts

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


Monday, August 18, 2014

Analysis of Shifting Paradigms: Provider-Centered to Patient-Centered Care & Research


Doctors Know Best, but Doctors Sometimes Do NOT Know Best

—THE NEW YORK TIMES, 2012


In current clinical practice, providers focus on assessing disease severity and evaluating drug and treatment effectiveness. There is less emphasis on patient involvement in decisions about care or on the specific needs of patients that affect their quality of life. Despite expensive, highly specialized, and technologically advanced care practices; this disease-centered approach to care has resulted in poor quality outcomes. In terms of research, knowledge gained from clinical research does not directly answer the primary clinical questions of what is best for the patient at hand.

Physician centered practice developed from a system that allowed mounting utilization of diagnostic testing, prescriptions, hospitalizations, and referrals without regard for specific patient needs or desires. It is considered “depersonalized medicine” or “illness- oriented care”, with the aim to treat the illness, not the patients with the illness. The long held assumption that “Dr. knows best” is now being challenged as payers and consumers demand better bang (better outcomes) for the buck.

Assumptions
Provider Centered Care
Patient Centered Care
Disease focused
Patient focused
Physicians know best:  the experts
Physicians collaborate: the enablers
Physician oriented outcomes: What is best for the disease or illness
Patient oriented outcomes: What is best for individual patient
The best intervention for the typical patient
The best intervention under what conditions works for which patient
Patients as passive: complying with physician’s orders
Patients as active: “Nothing About Me Without Me”
Patients voice is ignored
Patient voice guides clinical decision making
“What’s the matter” with patients
“What matters” to patients
Fee for service, Shorter, more frequent visits, less reimbursement
A variety of qualified primary care providers – including nurse practitioners
Consumers unaware what healthcare $$ buys
Consumer informed – demanding better deal
Provider Centered Research
Patients Centered Research
Absolute efficacy
Comparative effectiveness
Homogeneity
Heterogeneity
Generality
Individualizations
Statistical significance
“What matters” to patients

Nothing About Me Without Me.”
--PATIENT'S VOICE

Consumers are demanding that the role of the healthcare professional should change “from experts who care for patients to enablers who support patients to make decisions.” Rapid advances in technology create a forum for improved health literacy and curiosity among the public. Health care consumers no longer are interested in playing passive roles, but rather expect to be listened to, respected and treated with dignity and earnestness. Published reports from regulatory agencies call out the health care industry to either improve morbidity and mortality or face consequences of limited reimbursement and penalties. Comparative effectiveness research (CER) moves scholarship in a direction that engages the population as partners, addressing diversity and creating personalized approaches. A consumer movement advocates that patient-centered care become a goal of most healthcare practitioners and researchers worldwide.

Effective partnership with patients has been reported being associated with a large variety of positive patient outcomes, such as adherence to treatment, improved health, and satisfaction. Today, patient-centered care is thus termed as one of six indicators of quality care. Patient-centered care requires more than a respectful attitude toward patients, it requires personalized clinical interventions.  It is not necessarily giving patients what they want regardless of values or costs, but rather requires knowing the patient as a person and engaging the patient as a partner in his or her own care. 

Similarly, patient-oriented research should not be based on the evaluation of medical interventions in the average patient, but “on the identification of the best intervention for every individual patient. Patient oriented research focuses on the study of heterogeneity and places greater value on observations and exceptions-especially as they occur in real life versus under experimental conditions”. The outcome measures should shift from what are most important to the doctors to what are most important to the patients.  “A difference, to be a difference, must make a difference”. The Patient Centered Outcomes Research Institute (PCORI) is a corporation authorized under the Affordable Care Act of 2010 that incorporates patient-centered principles in their goal.

Key drivers of this paradigm shift:

 

*      Personalized medicine and tailored therapeutics;
*      Advances in pharmacogenomics and technology;
*      Medical costs forecasted to be 20% of GDP in 2020;
*      Pressing shortage of primary care providers;
*      Growing chronic conditions and increased medical complexity;
*      Affordable Care Act- 16% of citizens uninsured
*      

“Be Careful Not To Assume”  
  --Légaré et al., 2010

Determining what patients want does not require complex scales or sophisticated statistical tests.   Instead, providers must move from “what’s the matter” with our patients to “what matters” to our patients.  Often what the patient craves is a listening ear, compassionate interactions, access to information, and attention to their care.  Other factors such as level of adherence to medication, degree of tolerance to an adverse effect, past experience, and health objectives can have a decisive influence on the patient’s preferences. When more engaged with care, patients and families can help prevent drastic mistakes or oversights, such as identifying a wrong drug or dose they get from the pharmacy or notifying a doctor about a strange medication side effects.

Quality Equals Reduced Cost, Better Outcomes and Patient Satisfaction

The National Quality Strategy (NQS) promotes quality health care in which the needs of patients, families, and communities guide the actions of all those who deliver and pay for care; there are three broad aims: Better care; healthy people/healthy communities; and affordable careTo advance these aims, they propose six priorities, of which “ensuring that each person and family is engaged as partners in their care” is one that pertains to patient centeredness. This priority is based on the latest research, input from a broad range of stakeholders, and examples from around the country and has great potential for rapidly improving health outcomes and increasing the effectiveness of care for all populations.

Healthcare Providers: "Nice, But Not Necessary"
Patients: "That's What I'm Paying You For"
--NURS 7106-001

It is important to explore tensions that lie between the margins of traditional medical models and stakeholder engagement models. As patients advocate for better care, providers may feel justified in taking a patriarchal stance given level of education and training. There has to be a change in how health care providers are educated in order to make this shift. Not only are schools of medicine and nursing going to need to teach how to recognize and treat diseases but also they are going to have to be innovative in their curriculum in order to teach their students how to enable their patients.

Some patients may expect the provider, who has the expertise, to take the lead in patient care. This expectation is summed up by the idea of "that's what I'm paying you for". If patients are to be taking charge of their own care, there needs to be a change in expectations. Responsibility should be shared in appropriate ways. The goals of the provider may be disparate from those of the patient when there is a misalignment in worldviews between provider and patient. A common challenge is one of respecting religious/cultural values. It is important to honor the patient's wishes as part of providing evidence based care.

There are myths about patient-centered care models - such as it is more expensive, takes more time, and really falls into that "nice but not necessary" category. As more evidence accumulates, these myths will be challenged. However, time constraints pose a real threat in the current environment. Patients or family members may be afraid to request something of the provider because they feel like they are rushed or the provider does not have time for them. Transparent communication about the time constraints and the need to schedule multiple appointments, using other team members as indicated, and prioritizing the patient's concerns can occur up front and mitigate this tension.

Fundamentally, a key challenge going forward will be the ability to demonstrate that positive patient-centered outcomes correlate with positive general health outcomes. One elephant in the room is reimbursement. Primary care provider (PCP) visits do not generate high levels of reimbursement so providers compensate by seeing as many patients as they can per day. Some would argue that to keep afloat until the major stakeholders - insurance and CMS gets behind this—patient centered care is not possible. New payment models are coming however –as soon as 2015 for patients with complex chronic conditions.

Patient-Centered Care is NOT Only the Job of Nurses,
But Will Transcend Across Disciplines.
--NURS 7106-001

Patient-centeredness must transcend across disciplines. Achieving this level of collaboration poses the greatest challenge. As care becomes more focused on populations, across the episodes of care and including prevention, interdisciplinary team care will become the norm and the entire team will need to partner with patients and families.  Not only will disciplines need to be able to communicate better, but also specialties will need to be able to communicate better with the primary care team. All will be challenged to communicate differently in a patient-centric model.

References
Boult, C., & Wieland, G. D. (2010). Comprehensive primary care for older patients with multiple chronic conditions:“nobody rushes you through”. JAMA, 304(17), 1936-1943.

Clayton, M. F., Latimer, S., Dunn, T. W., & Haas, L. (2011). Assessing patient-centered communication in a family practice setting: how do we measure it, and whose opinion matters? Patient Education and Counseling, 84(3), 294-302. doi: 10.1016/j.pec.2011.05.027

Epstein, Ronald M, Fiscella, Kevin, Lesser, Cara S, & Stange, Kurt C. (2010). Why the nation needs a policy push on patient-centered health care. Health Affairs, 29(8), 1489-1495.

Findley, L.J., & Baker, M.G. (2002). Treating neurodegenerative diseases. British Medical Journal, 324(7352), 1466-1467.

Godlee, Fiona. (2012). Outcomes that matter to patients. BMJ, 344.

Institute of Medicine Committee on Quality of Health Care in America. (2001) Crossing the quality chasm: a new health system for the 21st century. Washington (DC): National Academies Press (US).

Katon, W., Russo, J., Lin, E. H., Schmittdiel, J., Ciechanowski, P., Ludman, E., Von Korff, M. (2012). Cost-effectiveness of a multicondition collaborative care intervention: a randomized controlled trial. Archives of General Psychiatry, 69(5), 506-514. doi: 10.1001/archgenpsychiatry.2011.1548

Marshall, M., & Bibby, J. (2011). Supporting patients to make the best decisions. British Medical Journal, 342(d2117), 10.1136.

Picker Institute. (2008). About the patient-centered care improvement guide. Retrieved from http://www.patient-centeredcare.org/inside/abouttheguide.html

Rickert, J. (2012). Patient-centered care: what it means and how to get there. Retrieved from http://healthaffairs.org/blog/2012/01/24/patient-centered-care-what-it-means-and-how-to-get-there/

Sacristan, J. A. (2011). [Patient-centered medicine and comparative effectiveness research]. Medicina Clínica (Barc), 136(10), 438-440. doi: 10.1016/j.medcli.2010.11.014

Sacristan, J. A. (2013). Patient-centered medicine and patient-oriented research: improving health outcomes for individual patients. BMC Medical Informatics and Decision Making, 13, 6. doi: 10.1186/1472-6947-13-6

The National Quality Strategy. (n.d.). The national quality strategy overview. Retrived from http://www.ahrq.gov/workingforquality/toolkit.htm

Van der Eijk, M., Nijhuis, F. A., Faber, M. J., & Bloem, B. R. (2013). Moving from physician-centered care towards patient-centered care for Parkinson's disease patients. Parkinsonism & Related Disorders, 19(11), 923-927. doi: 10.1016/j.parkreldis.2013.04.022

Wynia, M., & Matiasek, J. (2006). Promising practices for patient-centered communication with vulnerable populations: examples from eight hospitals. The Commonwealth Fund, 1-94.


Key Links and Resources
1.        Agency for Healthcare Research and Quality. (n.d.). Working for quality. Retrieved from http://www.ahrq.gov/workingforquality/index.html
2.        Agency for Healthcare Research and Quality. Retrieved from http://www.ahrq.gov/research/findings/factsheets/patient-centered/ria-issue5/index.html
3.        Patient-Centered Outcomes Research Institute. Retrieved from http://www.pcori.org/
4.        Wen, L. (2012). From doctor-centered to patient-centered care. Psychology Today. Retrieved from http://www.psychologytoday.com/blog/the-doctor-is-listening/201211/doctor-centered-patient-centered-care
5.        Zickmund, S. (n.d). Incorporating stakeholder engagement into VA research: What can we learn from the patient-centered outcomes research institute (PCORI)? Retrieved from http://www.hsrd.research.va.gov/for_researchers/cyber_seminars/archives/777-notes.pdf
6.        Institute of patient-and family centered care center at http://www.ipfcc.org/advance/topics/videos.html
7.        The National Quality Strategy (NQS): six priorities at http://www.ahrq.gov/workingforquality/toolkit.htm
8.        The Doctor is Listening by Leana Wen. (2012, November).  Psychology Today at http://www.psychologytoday.com/blog/the-doctor-is-listening/201211/doctor-centered-patient-centered-care
9.        Patient- and Family-Centered Care: Why it Matters and How to Practice It. At https://www.youtube.com/watch?v=7g-5I7DO1rQ&feature=related   
10.    Patient-Centered Care: What It Means And How To Get There at http://healthaffairs.org/blog/2012/01/24/patient-centered-care-what-it-means-and-how-to-get-there/
11.    The Values and Value of Patient-Centered Care. At http://www.annfammed.org/content/9/2/100
12.    The Ideal Medical Practice Model: Improving Efficiency, Quality and the Doctor-Patient Relationship at http://www.aafp.org/fpm/2007/0900/p20.html
13.    About the patient-centered care improvement guide at http://www.patient-centeredcare.org/inside/abouttheguide.html

Created by Participants in Nursing 7106 Context for Advancing Science (and Improving Health)
University of Utah College of Nursing PhD Program Summer 2014 
Submitted by: By Sara Hawkins RN MSN & Rumei Yang RN MS

(Lead Authors)