Abstract
BackgroundIn April 2005, researchers based at the Medical Research Council Clinical Trials Unit, set out to involve women affected by cervical cancer in a systematic review and meta-analysis of individual patient data to evaluate treatments for this disease. Each of the women had previously been treated for cervical cancer. Following completion of the meta-analysis, we aimed to evaluate the process of involvement from the researcher and research partner perspective.MethodsAn advisory group was first established to give advice on recruiting, supporting and involving women and led to efforts to recruit women to take part in the systematic review using different approaches. Evaluation of the process and outcomes of the partnership between the systematic reviewers and the patients, in respect to what the partnership achieved; what worked well and what were the difficulties; what was learned and the resource requirements, took place during the conduct of the meta-analysis and again after completion of the project.ResultsSix women, each of whom had received treatments for cervical cancer, were recruited as Patient Research Partners and five of these women subsequently took part in a variety of activities around the systematic review. They attended progress meetings and all but one attended a meeting at which the first results of the review were presented to all collaborators and gave feedback. Three of the women also became involved in a further related research project which led to an editorial publication from the patient perspective and also participated, along with two lead researchers, in the evaluation of the process and outcomes. While they were generally positive about the experience, one Patient Research Partner questioned the extent of the impact patients could make to the systematic review process.ConclusionsIn general, researchers and patient research partners felt that they had learned a lot from the process and considered it to have been a positive experience. The researchers felt that because of resource implications, patient involvement in future systematic reviews would probably have to be prioritized to those in which the greatest impacts could be achieved.
Highlights
In April 2005, researchers based at the Medical Research Council Clinical Trials Unit, set out to involve women affected by cervical cancer in a systematic review and meta-analysis of individual patient data to evaluate treatments for this disease
Patient research partner participation and contribution to the individual patient data (IPD) meta-analysis Following the first meeting of the Patient Research Partners (October 2005) they became involved in a number of activities associated with the systematic review, including providing feedback on the detailed information folders; helping to trace contact details for trial investigators; learning about data management and analysis and contributing to regular project newsletters
Information from the completed questionnaires was supplemented with discussion at a follow-up evaluation meeting and with feedback obtained from four Patient Research Partners in June 2006
Summary
In April 2005, researchers based at the Medical Research Council Clinical Trials Unit, set out to involve women affected by cervical cancer in a systematic review and meta-analysis of individual patient data to evaluate treatments for this disease. Despite extensive literature searches, a recent narrative review of patient involvement [5] identified only seven published examples, only two of which had included a quantitative meta-analysis [6,7] of which only one formally evaluated the effects of a treatment intervention [7]. In September 2004, we initiated a systematic review and meta-analysis of chemoradiotherapy for the treatment of women with cervical cancer which aimed to collect and re-analyze individual patient data (IPD) from all relevant, eligible randomized controlled trials (RCTs) worldwide. Results of the systematic review and meta-analysis have been published elsewhere [8]
Sign-in/Register to view highlights & summary Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
