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Informing patients about placebo effects: using evidence, theory, and qualitative methods to develop a new website

Informing patients about placebo effects: using evidence, theory, and qualitative methods to develop a new website
Informing patients about placebo effects: using evidence, theory, and qualitative methods to develop a new website
Background: According to established ethical principles and guidelines, patients in clinical trials should be fully informed about the interventions they might receive. However, information about placebo-controlled clinical trials typically focuses on the new intervention being tested and provides limited and at times misleading information about placebos.

Objective: We aimed to create an informative, scientifically accurate and engaging website that could be used to improve understanding of placebo effects among patients who might be considering taking part in a placebo-controlled clinical trial.

Methods: Our approach drew on evidence-based, theory-based, and person-based intervention development. We used existing evidence and theory about placebo effects to develop content that was scientifically accurate. We used existing evidence and theory of health behaviour to ensure our content would be communicated persuasively, to an audience who might currently be ignorant or misinformed about placebo effects. A qualitative ‘think aloud’ study was conducted in which 10 participants viewed prototypes of the website and spoke their thoughts out loud in the presence of a researcher.

Results: The website provides information about 10 key topics and uses text, evidence summaries, quizzes, audio-clips of patients’ stories, and a short film to convey key messages. Comments from participants in the think aloud study highlighted occasional misunderstandings and off-putting/confusing features. These were addressed by modifying elements of content, style, and navigation to improve participants’ experiences of using the website.

Conclusions: We have developed an evidence-based website that incorporates theory-based techniques to inform members of the public about placebos and placebo effects. Qualitative research ensured our website was engaging and convincing for our target audience who might not perceive a need to learn about placebo effects. Before using the website in clinical trials it is necessary to test its effects on key outcomes, including patients’ knowledge and capacity for making informed choices about placebos.
1929-0748
Greville-Harris, Maddy
15fdf3ab-d129-4191-bfd4-9c14c910bfef
Bostock, Jennifer
209fe50a-0710-4023-aa51-5582b8b0eca5
Din, Amy
90f6f38e-8b75-413b-ac0e-b2eb50beeea7
Graham, Cynthia A.
ac400331-f231-4449-a69b-ec9a477224c8
Lewith, George
0fc483fa-f17b-47c5-94d9-5c15e65a7625
Liossi, Christina
fd401ad6-581a-4a31-a60b-f8671ffd3558
O'Riordan, Tim
d6ba191a-e432-41f8-b3da-176d28355579
White, Peter
f33829fd-24c9-4b44-a148-24eca9d52253
Yardley, Lucy
64be42c4-511d-484d-abaa-f8813452a22e
Bishop, Felicity L.
1f5429c5-325f-4ac4-aae3-6ba85d079928
Greville-Harris, Maddy
15fdf3ab-d129-4191-bfd4-9c14c910bfef
Bostock, Jennifer
209fe50a-0710-4023-aa51-5582b8b0eca5
Din, Amy
90f6f38e-8b75-413b-ac0e-b2eb50beeea7
Graham, Cynthia A.
ac400331-f231-4449-a69b-ec9a477224c8
Lewith, George
0fc483fa-f17b-47c5-94d9-5c15e65a7625
Liossi, Christina
fd401ad6-581a-4a31-a60b-f8671ffd3558
O'Riordan, Tim
d6ba191a-e432-41f8-b3da-176d28355579
White, Peter
f33829fd-24c9-4b44-a148-24eca9d52253
Yardley, Lucy
64be42c4-511d-484d-abaa-f8813452a22e
Bishop, Felicity L.
1f5429c5-325f-4ac4-aae3-6ba85d079928

Greville-Harris, Maddy, Bostock, Jennifer, Din, Amy, Graham, Cynthia A., Lewith, George, Liossi, Christina, O'Riordan, Tim, White, Peter, Yardley, Lucy and Bishop, Felicity L. (2016) Informing patients about placebo effects: using evidence, theory, and qualitative methods to develop a new website. Journal of Medical Internet Research (JMIR) Research Protocols, 5 (2). (doi:10.2196/resprot.5627).

Record type: Article

Abstract

Background: According to established ethical principles and guidelines, patients in clinical trials should be fully informed about the interventions they might receive. However, information about placebo-controlled clinical trials typically focuses on the new intervention being tested and provides limited and at times misleading information about placebos.

Objective: We aimed to create an informative, scientifically accurate and engaging website that could be used to improve understanding of placebo effects among patients who might be considering taking part in a placebo-controlled clinical trial.

Methods: Our approach drew on evidence-based, theory-based, and person-based intervention development. We used existing evidence and theory about placebo effects to develop content that was scientifically accurate. We used existing evidence and theory of health behaviour to ensure our content would be communicated persuasively, to an audience who might currently be ignorant or misinformed about placebo effects. A qualitative ‘think aloud’ study was conducted in which 10 participants viewed prototypes of the website and spoke their thoughts out loud in the presence of a researcher.

Results: The website provides information about 10 key topics and uses text, evidence summaries, quizzes, audio-clips of patients’ stories, and a short film to convey key messages. Comments from participants in the think aloud study highlighted occasional misunderstandings and off-putting/confusing features. These were addressed by modifying elements of content, style, and navigation to improve participants’ experiences of using the website.

Conclusions: We have developed an evidence-based website that incorporates theory-based techniques to inform members of the public about placebos and placebo effects. Qualitative research ensured our website was engaging and convincing for our target audience who might not perceive a need to learn about placebo effects. Before using the website in clinical trials it is necessary to test its effects on key outcomes, including patients’ knowledge and capacity for making informed choices about placebos.

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More information

Accepted/In Press date: 30 March 2016
e-pub ahead of print date: 10 June 2016
Published date: June 2016
Organisations: Faculty of Health Sciences

Identifiers

Local EPrints ID: 391101
URI: https://eprints.soton.ac.uk/id/eprint/391101
ISSN: 1929-0748
PURE UUID: 37d8ed1d-b5bb-46e4-a340-95222d00af3d
ORCID for Maddy Greville-Harris: ORCID iD orcid.org/0000-0001-8191-9614
ORCID for Cynthia A. Graham: ORCID iD orcid.org/0000-0002-7884-599X
ORCID for Christina Liossi: ORCID iD orcid.org/0000-0003-0627-6377
ORCID for Tim O'Riordan: ORCID iD orcid.org/0000-0003-4905-7430
ORCID for Lucy Yardley: ORCID iD orcid.org/0000-0002-3853-883X
ORCID for Felicity L. Bishop: ORCID iD orcid.org/0000-0002-8737-6662

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Date deposited: 08 Apr 2016 09:33
Last modified: 19 Jun 2019 00:37

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Contributors

Author: Maddy Greville-Harris ORCID iD
Author: Jennifer Bostock
Author: Amy Din
Author: George Lewith
Author: Tim O'Riordan ORCID iD
Author: Peter White
Author: Lucy Yardley ORCID iD

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