Skip to main content
Top
Published in: The Patient - Patient-Centered Outcomes Research 2/2012

01-06-2012 | Commentary

Patient and Public Involvement in Developing Patient-Reported Outcome Measures

Indispensable, Desirable, Challenging

Author: Dr Oliver Groene, PhD

Published in: The Patient - Patient-Centered Outcomes Research | Issue 2/2012

Login to get access

Excerpt

In their article ‘Patient and public involvement in patient-reported outcome measures: evolution not revolution,’ Staniszewska et al. review the potentials for patient and public involvement (PPI) in the development, application, evaluation, and interpretation of patient-reported outcome measures (PROMs).[1] They argue that the development of PROMs should embrace more collaborative forms of PPI with patients as partners in the research process. This should ensure the acceptability, relevance, and quality of the research. While many of the messages presented in their article can be endorsed, it needs to be emphasized that PPI is not a panacea: in some areas evidence supports PPI, others relate to more innovative and perhaps challenging applications. …
Literature
1.
go back to reference Staniszewska S, Haywood KL, Brett J, et al. Patient and public involvement in patient-reported outcome measures: evolution not revolution. Patient 2012; 5(2): 79–87PubMedCrossRef Staniszewska S, Haywood KL, Brett J, et al. Patient and public involvement in patient-reported outcome measures: evolution not revolution. Patient 2012; 5(2): 79–87PubMedCrossRef
2.
go back to reference Streiner DL, Norman GR. Health measurement scales. 3rd edition. New York (NY): Oxford University Press, 2003 Streiner DL, Norman GR. Health measurement scales. 3rd edition. New York (NY): Oxford University Press, 2003
3.
go back to reference Boivin A, Currie K, Fervers B, et al. Patient and public involvement in clinical guidelines: international experiences and future perspectives. Qual Saf Health Care 2010; 19(5): e22PubMedCrossRef Boivin A, Currie K, Fervers B, et al. Patient and public involvement in clinical guidelines: international experiences and future perspectives. Qual Saf Health Care 2010; 19(5): e22PubMedCrossRef
4.
go back to reference World Health Organization. Patients for patient safety — statement of case: how patient engagement became a priority. Geneva: WHO, 2011 [online]. Available from URL: http://www.who.int/patientsafety/patients_for_patient/statement/en/index.html [Accessed 2011 Sep 1] World Health Organization. Patients for patient safety — statement of case: how patient engagement became a priority. Geneva: WHO, 2011 [online]. Available from URL: http://​www.​who.​int/​patientsafety/​patients_​for_​patient/​statement/​en/​index.​html [Accessed 2011 Sep 1]
5.
go back to reference Conway J. Patients and families: powerful new partners for healthcare and caregivers. Healthc Exec 2008; 23: 60–2 Conway J. Patients and families: powerful new partners for healthcare and caregivers. Healthc Exec 2008; 23: 60–2
6.
go back to reference Levinson W, Kao A, Kuby A, et al. Not all patients want to participate in decision making: a national study of public preferences. J Gen Intern Med 2005; 20: 531–5PubMedCrossRef Levinson W, Kao A, Kuby A, et al. Not all patients want to participate in decision making: a national study of public preferences. J Gen Intern Med 2005; 20: 531–5PubMedCrossRef
7.
go back to reference Institute for Family-Centered Care. Developing and sustaining a patient and family advisory council. Washington, DC: IFCC, 2009 Institute for Family-Centered Care. Developing and sustaining a patient and family advisory council. Washington, DC: IFCC, 2009
8.
go back to reference Hildon ZH, Allwood D, Black N. Impact of format and content of visual display of data on comprehension, choice and preference: a systematic review. Int J Qual Health Care 2012; 24(1): 55–64PubMedCrossRef Hildon ZH, Allwood D, Black N. Impact of format and content of visual display of data on comprehension, choice and preference: a systematic review. Int J Qual Health Care 2012; 24(1): 55–64PubMedCrossRef
9.
go back to reference Peters E, Hibbard J, Slovic P, et al. Numeracy skill and the communication, comprehension, and use of risk-benefit information. Health Aff (Millwood) 2007; 26: 741–8CrossRef Peters E, Hibbard J, Slovic P, et al. Numeracy skill and the communication, comprehension, and use of risk-benefit information. Health Aff (Millwood) 2007; 26: 741–8CrossRef
10.
go back to reference Marcus EN. The silent epidemic: the health effects of illiteracy. New Engl J Med 2006; 355: 339–41PubMedCrossRef Marcus EN. The silent epidemic: the health effects of illiteracy. New Engl J Med 2006; 355: 339–41PubMedCrossRef
11.
go back to reference Lipkus IM, Samsa G, Rimer BK. General performance on a numeracy scale among highly educated samples. Med Decis Making 2001; 21: 37–44PubMedCrossRef Lipkus IM, Samsa G, Rimer BK. General performance on a numeracy scale among highly educated samples. Med Decis Making 2001; 21: 37–44PubMedCrossRef
12.
go back to reference Sunstein CR, Thaler RH. Libertarian paternalism is not an oxymoron. U Chicago Law Rev 2003; 70: 1159–202CrossRef Sunstein CR, Thaler RH. Libertarian paternalism is not an oxymoron. U Chicago Law Rev 2003; 70: 1159–202CrossRef
Metadata
Title
Patient and Public Involvement in Developing Patient-Reported Outcome Measures
Indispensable, Desirable, Challenging
Author
Dr Oliver Groene, PhD
Publication date
01-06-2012
Publisher
Springer International Publishing
Published in
The Patient - Patient-Centered Outcomes Research / Issue 2/2012
Print ISSN: 1178-1653
Electronic ISSN: 1178-1661
DOI
https://doi.org/10.2165/11597370-000000000-00000

Other articles of this Issue 2/2012

The Patient - Patient-Centered Outcomes Research 2/2012 Go to the issue
Live Webinar | 27-06-2024 | 18:00 (CEST)

Keynote webinar | Spotlight on medication adherence

Live: Thursday 27th June 2024, 18:00-19:30 (CEST)

WHO estimates that half of all patients worldwide are non-adherent to their prescribed medication. The consequences of poor adherence can be catastrophic, on both the individual and population level.

Join our expert panel to discover why you need to understand the drivers of non-adherence in your patients, and how you can optimize medication adherence in your clinics to drastically improve patient outcomes.

Prof. Kevin Dolgin
Prof. Florian Limbourg
Prof. Anoop Chauhan
Developed by: Springer Medicine
Obesity Clinical Trial Summary

At a glance: The STEP trials

A round-up of the STEP phase 3 clinical trials evaluating semaglutide for weight loss in people with overweight or obesity.

Developed by: Springer Medicine

Highlights from the ACC 2024 Congress

Year in Review: Pediatric cardiology

Watch Dr. Anne Marie Valente present the last year's highlights in pediatric and congenital heart disease in the official ACC.24 Year in Review session.

Year in Review: Pulmonary vascular disease

The last year's highlights in pulmonary vascular disease are presented by Dr. Jane Leopold in this official video from ACC.24.

Year in Review: Valvular heart disease

Watch Prof. William Zoghbi present the last year's highlights in valvular heart disease from the official ACC.24 Year in Review session.

Year in Review: Heart failure and cardiomyopathies

Watch this official video from ACC.24. Dr. Biykem Bozkurt discusses last year's major advances in heart failure and cardiomyopathies.