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Background <p>Patients require adequate and accurate information to make informed decisions about their treatment. Issues such as time constraints may limit the amount of information healthcare professionals (HCPs) can provide during clinical consultations. Patients may seek additional information from other sources including commercial drug websites, drug review sites, and social media platforms. Drug company pharmaceutical websites are an option for both patients and HCPs to access information about patient-reported outcomes (PROs) and benefits of drug therapy. However, there is limited information on how PRO information is provided by pharmaceutical companies on their websites. The aim of this study was to review the use of PRO and preference data in the marketing of oncology products with US Food and Drug Administration (FDA) approvals on publicly available pharmaceutical websites.</p> Methods <p>A ‘case study’ approach was taken for this study. Oncology products with FDA approvals including PRO data between 2010 and 2020 were identified using an article by Cella et al. as a source document. Two FDA-approved oncology drugs that included tolerability labelling claims assessed by PROs were purposively selected and included in this review as exemplars. Product websites targeting lay audiences and or HCPs for the identified drugs were independently searched for by two researchers using the Google search engine in January and March 2025. The search terms used were combinations of the generic and brand names for each drug. PRO-related information was checked for and extracted. Approaches taken by the websites to providing PRO-specific patient information, including graphical data visualisation and other audio-visual methods of providing information were summarised.</p> Results <p>Eleven oncology products with PRO or preference data within their FDA approved label were identified. Of these, only six products had PRO or preference data available to support shared decision making on patient and/or HCP websites. Content varied significantly across websites and no standardised format was used. Patient websites for fedratinib (PRO data), pertuzumab/trastuzumab/hyaluronidase-zzfx (preference data) and ruxolitinib (PRO data) provided more information referencing the actual clinical trials with Total Symptom Scores mentioned specifically for fedratinib and ruxolitinib.</p> Conclusions <p>PRO data provided by pharmaceutical companies need to have sufficient detail to inform patient decisions otherwise there is a probability they may seek information from other sources which may be inaccurate or misleading. Pharmaceutical companies should consider and adopt recommendations for PRO data presentation on their website for effective communications to patients and HCPs.</p>

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Maximising the impact of patient-reported outcome and patient preference data for drug marketing: a review of pharmaceutical websites

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  • 发表日期：

    2026年6月2日

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  • Olalekan Lee Aiyegbusi,
  • Paul Kamudoni,
  • Roger Wilson,
  • Melanie J. Calvert

摘要

Background

Patients require adequate and accurate information to make informed decisions about their treatment. Issues such as time constraints may limit the amount of information healthcare professionals (HCPs) can provide during clinical consultations. Patients may seek additional information from other sources including commercial drug websites, drug review sites, and social media platforms. Drug company pharmaceutical websites are an option for both patients and HCPs to access information about patient-reported outcomes (PROs) and benefits of drug therapy. However, there is limited information on how PRO information is provided by pharmaceutical companies on their websites. The aim of this study was to review the use of PRO and preference data in the marketing of oncology products with US Food and Drug Administration (FDA) approvals on publicly available pharmaceutical websites.

Methods

A ‘case study’ approach was taken for this study. Oncology products with FDA approvals including PRO data between 2010 and 2020 were identified using an article by Cella et al. as a source document. Two FDA-approved oncology drugs that included tolerability labelling claims assessed by PROs were purposively selected and included in this review as exemplars. Product websites targeting lay audiences and or HCPs for the identified drugs were independently searched for by two researchers using the Google search engine in January and March 2025. The search terms used were combinations of the generic and brand names for each drug. PRO-related information was checked for and extracted. Approaches taken by the websites to providing PRO-specific patient information, including graphical data visualisation and other audio-visual methods of providing information were summarised.

Results

Eleven oncology products with PRO or preference data within their FDA approved label were identified. Of these, only six products had PRO or preference data available to support shared decision making on patient and/or HCP websites. Content varied significantly across websites and no standardised format was used. Patient websites for fedratinib (PRO data), pertuzumab/trastuzumab/hyaluronidase-zzfx (preference data) and ruxolitinib (PRO data) provided more information referencing the actual clinical trials with Total Symptom Scores mentioned specifically for fedratinib and ruxolitinib.

Conclusions

PRO data provided by pharmaceutical companies need to have sufficient detail to inform patient decisions otherwise there is a probability they may seek information from other sources which may be inaccurate or misleading. Pharmaceutical companies should consider and adopt recommendations for PRO data presentation on their website for effective communications to patients and HCPs.