Skip to main content

Abstract

Aim: Person-centeredness shifts the focus of healthcare and research to the needs and priorities of patients and communities, and may improve health outcomes. There are no instruments available, however, with which we can assess the degree to which research is indeed person-centered. Our aim was to develop and validate a quantitative instrument to rate person-centeredness of research. Materials & methods: Scale development and validation entailed a multistep approach that led to the seven-item Person Centeredness of Research Scale (PCoR Scale) that uses a 5-point Likert rating scale. The scale was validated using ratings of the Patient-Centered Outcomes Research Institute-funded research abstracts or abstracts submitted to a translational science meeting. Results: Psychometric properties of the PCoR Scale showed high internal consistency (α = 0.96). All seven items were highly correlated with the total score (rs range from 0.63 to 0.90). An exploratory factor analysis demonstrated that all of the items loaded on a single factor, explaining 80% of the variance. The Patient-Centered Outcomes Research Institute-funded research abstracts had a mean PCoR Scale score of 6.52 (±8.01) that was significantly higher than the abstracts submitted to the translational science meeting (-2.56 (±9.18); t = 8.09; p < 0.0001). Inter-rater reliability in the validation of the revised instrument was high (Intraclass Correlation Coefficient [ICC](group1) = 0.89; ICC(group2) = 0.95). Conclusion: This brief, quantitative rating scale is the first to assess the main constructs that describe person-centeredness of research products. The PCoR Scale can be used to assess person-centeredness in research products; for example, by funders evaluating proposals, data networks evaluating data requests or researchers evaluating their research designs.

Supplementary Material

File (supplementary_material.docx)

References

Papers of special note have been highlighted as: • of interest
1.
McWhinney IR. Patient-centred and doctor-centred models of clinical decision-making [Internet]. In: Decision-Making in General Practice. Sheldon M, Brooke J, Rector A (Eds). MacMillan Education, London, UK, 31–46 (1985). https://doi.org/10.1007/978-1-349-07159-3_4.
2.
Sherer JL, Anderson HJ, Lumsdon K. Putting patients first. Hospitals work to define patient-centered care. Hospitals 67(3), 14–24, 26 (1993).
3.
Rathert C, Wyrwich MD, Boren SA. Patient-centered care and outcomes: a systematic review of the literature. Med. Care Res. Rev. 70(4), 351–379 (2013).
4.
Lewin SA, Skea ZC, Entwistle V, Zwarenstein M, Dick J. Interventions for providers to promote a patient-centred approach in clinical consultations. Cochrane Database Syst. Rev. (4), CD003267 (2001).
5.
Mead N, Bower P. Patient-centred consultations and outcomes in primary care: a review of the literature. Patient Educ. Couns. 48(1), 51–61 (2002).
6.
Dwamena F, Holmes-Rovner M, Gaulden CM et al. Interventions for providers to promote a patient-centred approach in clinical consultations. Cochrane Database Syst. Rev. 12, CD003267 (2012).
7.
Stewart M, Brown JB, Weston WW, McWhinney IR, McWilliam CL. Patient-Centered Medicine: Transforming the Clinical Method (2nd Ed.). Radcliffe Medical Press, Abingdon, UK (2003).
8.
WHO | WHO global strategy on people-centred and integrated health services. www.who.int/servicedeliverysafety/areas/people-centred-care/global-strategy/en/.
9.
Santana MJ, Manalili K, Jolley RJ, Zelinsky S, Quan H, Lu M. How to practice person-centred care: a conceptual framework. Health Expect. 21(2), 429–440 (2017).
10.
Morgan S, Yoder LH. A concept analysis of person-centered care. J. Holist. Nurs. 30(1), 6–15 (2012).
• Comprehensive review of person-centeredness.
11.
Calisi R, Boyko S, Vendette A, Zagar A. What is person-centred care? A qualitative inquiry into oncology staff and patient and family experience of person-centred care. J. Med. Imaging Radiat. Sci. 47(4), 309–314 (2016).
12.
Baker A. Crossing the quality chasm: a new health system for the 21st century. Br. Med. J. Lond. 323(7322), 1192 (2001).
• Outlines the need for person-centeredness to improve health system.
13.
14.
Berwick DM. A user's manual for the IOM's “Quality Chasm” report. Health Aff. Proj. Hope. 21(3), 80–90 (2002).
15.
Frank L, Basch E, Selby JV, The Patient-Centered Outcomes Research Institute. The PCORI perspective on patient-centered outcomes research. JAMA 312(15), 1513–1514 (2014).
16.
Crowley WF, Sherwood L, Salber P et al. Clinical research in the United States at a crossroads: proposal for a novel public-private partnership to establish a national clinical research enterprise. JAMA 291(9), 1120–1126 (2004).
17.
Fleurence R, Selby JV, Odom-Walker K et al. How the Patient-Centered Outcomes Research Institute is engaging patients and others in shaping its research agenda. Health Aff. (Millwood). 32(2), 393–400 (2013).
18.
Krumholz HM. Seeing through the eyes of patients: the Patient-Centered Outcomes Research Institute Funding Announcements. Ann. Intern. Med. 157(6), 446–447 (2012).
19.
Pignone M. Challenges to implementing patient-centered research. Ann. Intern. Med. 157(6), 450–451 (2012).
20.
Edvardsson D, Koch S, Nay R. Psychometric evaluation of the English language Person-Centered Climate Questionnaire – Patient Version. West. J. Nurs. Res. 31(2), 235–244 (2009).
21.
Coyle J, Williams B. Valuing people as individuals: development of an instrument through a survey of person-centredness in secondary care. J. Adv. Nurs. 36(3), 450–459 (2001).
22.
Suhonen R, Välimäki M, Leino-Kilpi H. Individualized care, quality of life and satisfaction with nursing care. J. Adv. Nurs. 50(3), 283–292 (2005).
23.
Edvardsson D, Koch S, Nay R. Psychometric evaluation of the English language Person-Centered Climate Questionnaire – Patient Version. West. J. Nurs. Res. 31(2), 235–244 (2009).
24.
Kost RG, Lee LM, Yessis J, Wesley RA, Henderson DK, Coller BS. Assessing participant-centered outcomes to improve clinical research. N. Engl. J. Med. 369(23), 2179–2181 (2013).
25.
PCORI (Patient-Centered Outcomes Research Institute). PCORI Engagement Rubric (2015). www.pcori.org/sites/default/files/Engagement-Rubric.pdf.