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Seeing Through the Eyes of Patients: The Patient-Centered Outcomes Research Institute Funding Announcements

Harlan M. Krumholz, MD, SM; Joe V. Selby, MD, MPH, on behalf of the Patient-Centered Outcomes Research Institute
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From Yale University School of Medicine, Yale School of Public Health, Center for Outcomes Research and Evaluation, Yale-New Haven Hospital, New Haven, Connecticut, and the Patient-Centered Outcomes Research Institute, Washington, DC.

Grant Support: Dr. Krumholz is supported by grant U01 HL105270-02 (Center for Cardiovascular Outcomes Research at Yale University) from the National Heart, Lung, and Blood Institute.

Potential Conflicts of Interest: Disclosures can be viewed at www.acponline.org/authors/icmje/ConflictOfInterestForms.do?msNum=M12-1503.

Requests for Single Reprints: Harlan M. Krumholz, MD, SM, 1 Church Street, Suite 200, New Haven, CT 06510; e-mail, harlan.krumholz@yale.edu.

Current Author Addresses: Dr. Krumholz: 1 Church Street, Suite 200, New Haven, CT 06510.

Dr. Selby: 1828 L Street NW, Suite 900, Washington, DC 20036.

Author Contributions: Conception and design: H.M. Krumholz, J.V. Selby.

Drafting of the article: H.M. Krumholz, J.V. Selby.

Critical revision of the article for important intellectual content: H.M. Krumholz, J.V. Selby.

Final approval of the article: H.M. Krumholz.

Administrative, technical, or logistic support: H.M. Krumholz, J.V. Selby.


Ann Intern Med. 2012;157(6):446-447. doi:10.7326/0003-4819-157-6-201209180-00519
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The Patient-Centered Outcomes Research Institute (PCORI), with resources provided through the Patient Protection and Affordable Care Act, will invest more than $3 billion between now and 2019 in research that addresses questions of relevance to patients, their caregivers, and clinicians. This commentary discusses PCORI's recently announced funding priorities and goals.

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PCORI Language Needs to be Revised to Focus on “Person-Centered” outcomes
Posted on October 16, 2012
Bradi B. Granger , RN, PhD, Amy P. Abernethy, MD, Inger Ekman RN, PhD
Duke, University of Gothenburg, Sweden. For more information on affiliations see below.
Conflict of Interest: None Declared

The purpose of the Patient-Centred Outcomes Research Institute (PCORI) is to assist patients, defined as “any individual with or at risk for a specific health condition”, in making informed decisions about preventing, diagnosing, treating, monitoring and managing disease and illness. PCORI funding was recently summarized in the journal (1). PCORI was based on the Patient Protection and Affordable Care Act (PPACA), which uses both patient-centered and person-centered care as keywords. By acknowledging the person as an independent decision-maker with regard to behavioral changes and health care decisions intended to improve long-term health, PCORI changes the social paradigm around what it means to be not only a patient, but a person.

In the recent PCORI report on methodology the concept of “patient-centered” and patient-centricity is used frequently (2,3).  In fact, the patient is referenced as a person, someone with opinions, thoughts, wills and wishes, who can also become a patient. Thus, as the intent of PCORI is to address the broader scope of prevention, health maintenance and engagement in life-long self-care, it is critical to define and specify the broader scope of person-centred care into the PCORI language (4). We must move from the concept of health care consumers as “patients” – to engaged individuals with intentions and influence as people – i.e. persons involved in the action at each step along the way.

This isn’t simply an exercise in semantics; the language we choose catalyzes a cascade of expectations and relationships. We strongly recommend that the PCORI language is revised to focus on “person-centered” outcomes for the following reasons:

1. In the care spectrum from prevention through chronic illness to palliative care and death, the recipient of care is considered, both by him/herself and by PPACA, as a person and actor in the health care process. The concept of “patient-hood” focuses attention on sickness; we need to focus on the needs of all people, in sickness and in health.

2. Health interventions effect and encompass more than just disease and illness; the use of the term person-centered care, while it relates to health, invites other disciplines such as economists, sociologists and others to participate.

3. The resources from PCORI should flow according to these goals. By limiting the focus to patient-centred care the money flows toward acute care settings and clinical trials. By extending to personhood, the scope of research and innovation is broadened towards the 5000 hours spent outside the healthcare setting (5).

Bradi B. Granger, RN, PhD, Director, Duke Heart Center Nursing Research ProgramAssociate Director, Duke Translational Nursing InstituteAssociate Professor, Duke University School of Nursing

Amy P. Abernethy, MD, Director Center for Learning Health Care, Duke Clinical Research InstituteDirector Duke Cancer Care Research Program, Duke Cancer Institute Associate Professor, Division of Medical Oncology, Department of Medicine Duke University School of Medicine

Inger Ekman RN, PhD, Institute of Health and Care Science, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Centre for Person-Centred Care (GPCC) University of Gothenburg, Gothenburg, Sweden, www.gpcc.gu.se

References

1. Krumholz HM, Selby JV. Seeing Through the Eyes of Patients: The Patient-Centered Outcomes Research Institute Funding Announcements. Annals of internal medicine 2012.

2. PCORI Methodology Committee. Public comment draft report of the Patient-Centered Outcomes Research Institute (PCORI) Methodology Committee presented on July 23, 2012, and revised thereafter.

3. Schmiemann G. [The preliminary draft of the methodology report by the Patient-Centered Outcomes Research Institute]. Zeitschrift fur Evidenz, Fortbildung und Qualitat im Gesundheitswesen 2012;106:496-9.

4. Ekman I, Swedberg K, Taft C, et al. Person-centered care--ready for prime time. European journal of cardiovascular nursing : journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology 2011;10:248-51.

5. Asch DA, Muller RW, Volpp KG. Automated hovering in health care--watching over the 5000 hours. The New England journal of medicine 2012;367:1-3.

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