ReviewHealth expectations : an international journal of public participation in health care and health policy2020
Including the patient voice in the development and implementation of patient-reported outcomes in cancer clinical trials.
Review in Health expectations : an international journal of public participation in health care and health policy, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 25 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
25 citing papers in PubMed.
- Quality of life in cemiplimab-treated patients with locally advanced basal cell carcinoma in a Phase II clinical trial.Future oncology (London, England) · 2024Trial
- Patients' experience of using online interventions for the management of late effects following completion of cancer treatment-protocol for a qualitative systematic review.Systematic reviews · 2026Article
- Incorporating patients' input in the development and validation of patient-reported outcome measures in oncology: a comprehensive scoping review.Health and quality of life outcomes · 2026Review
- Improving Collaborative Engagement in Health State Valuation: A Scoping Review of Current Practices and Emerging Recommendations.PharmacoEconomics · 2026Review
- Identifying facilitators, barriers and areas of opportunity in diabetic retinopathy screening: quality improvement through qualitative methods.BMJ open quality · 2025Article
- Understanding the Role of Patient-Reported Outcomes for Decision-Making in Early-Phase Dose-Finding Clinical Trials.Current oncology (Toronto, Ont.) · 2025Article
- A rare partnership: patient community and industry collaboration to shape the impact of real-world evidence on the rare disease ecosystem.Orphanet journal of rare diseases · 2024Review
- MASCC 2023 Patient-Centered Antiemetic Guidelines and Education Statements: an evidence-based and consensus resource for patients.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2024Article
- From Innovator Result-driven to Multi-actor Impact-oriented Public-Private Partnerships: Integrating the Patient Perspective.Handbook of experimental pharmacology · 2024Review
- Leveraging patient experience data to guide medicines development, regulation, access decisions and clinical care in the EU.Frontiers in medicine · 2024Review
- Achieving Diagnostic Excellence: Roadmaps to Develop and Use Patient-Reported Measures With an Equity Lens.International journal of health policy and management · 2024Article
- Evidence-based consensus guidelines for ALS genetic testing and counseling.Annals of clinical and translational neurology · 2023Article
- Patient and clinician-reported experiences of using electronic patient reported outcome measures (ePROMs) as part of routine cancer care.Journal of patient-reported outcomes · 2023Article
- The importance of patient-reported outcomes in pragmatic clinical trials.Journal of the National Cancer Institute · 2023Article
- Adopting recommendations for implementing patient involvement in cancer research: a funder's approach.Research involvement and engagement · 2023Article
- Listening to the Patient Voice Adds Value to Cancer Clinical Trials.Journal of the National Cancer Institute · 2022Article
- Innovative Designs and Logistical Considerations for Expedited Clinical Development of Combination Disease-Modifying Treatments for Type 1 Diabetes.Diabetes care · 2022Review
- Saving time and effort: Best practice for adapting existing patient-reported outcome measures in hepatology.World journal of hepatology · 2022Review
- Reaching beyond maximum grade: progress and future directions for modernising the assessment and reporting of adverse events in haematological malignancies.The Lancet. Haematology · 2022Review
- Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
contextPatient-reported outcomes (PROs) are used in parallel with clinical evidence to inform decisions made by industry, clinicians, regulators, health technology assessment bodies and other health-care decision-makers. In addition, PRO data can also guide shared decision making and individual patient choice. Yet, the quality of many PROs in cancer clinical trials is suboptimal and requires improvement to add value to health care and policy decision making.
objectiveTo show how the integration of the patient and/or patient advocate at all stages of PRO development can help to realize the full potential of PROs.
methodsWe examined the literature to show that the patient voice is often absent from the planning and implementation of PROs in cancer clinical trials. Good practice examples from the literature were combined with guideline recommendations, training or educational resources, and our own experience to create detailed practical steps for the inclusion of patients and/or patient advocates throughout PRO development.
resultsPatient or patient advocates can play an active role in shaping PROs that are meaningful to the patient. They can contribute to content, choice of medium and implementation in a way that may support PRO completion and minimize missing data. Patients and their advocates can work to ensure PRO findings are disseminated appropriately in a way that is accessible to patients.
conclusionThis practical guidance aims to optimize PRO development and implementation in clinical trials, resulting in robust, relevant data that reflect the patient experience and that support decisions made by all stakeholders involved in research and health care.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.