Patient involvement in questionnaire design: tackling response error and burden.

Questionnaires capture patient perspectives succinctly and at relatively low cost, making them a popular data collection tool for health researchers. However, questionnaire data can be affected by response error and response burden. Patient involvement during questionnaire design can help reduce the effect of response error and burden. This paper describes a novel approach for patient involvement during questionnaire design, combining methods from cognitive interviewing (Think Aloud Tasks) with an open-ended follow-up discussion to collate and act on patient feedback, while also taking account of the common challenges in questionnaire design (i.e. response error and burden). The strengths and limitations of this approach are discussed, and recommendations are made for future use.

Involving the public in decision-making about large-scale changes to health services: A scoping review.

BACKGROUND: Public involvement in large-scale changes (LSC) to health services is strongly promoted - and even mandated - in several health systems. This scoping review aimed to describe the evidence about how public involvement is conceptualised and conducted in LSC, with what impact, and how different stakeholders perceived this process. METHODS: After searching eight databases, 34 publications were included. Data were extracted and charted using a standardised form. Findings from the literature were discussed with frontline stakeholders. RESULTS: Public involvement remains poorly defined and its aims lack clarity in LSC. Public meetings are most often used to gather public views but raise the issue of representativeness. However, evidence in the literature is scarce about which involvement methods - informative and deliberative - are appropriate for the different stages of the LSC and with what impact. In several cases, the involved public felt they had no influence on decision-making regarding LSC proposals, sometimes leading to an environment of mistrust. In those instances, the public understood the technical arguments for change and actively questioned them, opposed LSC plans and sought alternative routes to voice their views. CONCLUSION: More research and consideration are needed regarding who should be involved, with what purpose and how. We argue that in practice two models of involvement, invited and uninvited participation, coexist and therefore interactions between the two should be given further consideration in LSC.