Background <p>Evaluation of patient and public involvement (PPI) is crucial to ensuring it is conducted with quality. However, determining how best to evaluate the experience of those doing involvement activities remains challenging, particularly given the complex landscape of diverse terminology and wide range of methods. There is a need for robust and accessible tools, grounded in established standards, that reflect the perspectives of patients and public contributors involved in PPI activities. To address this, we developed a questionnaire (4Pi Questionnaire) based on the 4Pi National Involvement Standards, a project that developed a framework around good practice and measurement, monitoring and evaluation of involvement activities.</p> Methods <p>The questionnaire was developed through an iterative process involving literature review, experts’ input and extensive consultation with PPI contributors. Initial items were generated deductively from the five domains of the 4Pi National Involvement Standards framework (i.e., Principle, Purpose, Presence, Process and Impact). Subsequent versions of the questionnaire were refined using a face validity workshop, a Questionnaire Appraisal System, and focus group-based cognitive interviewing (CI) with PPI contributors. Feedback focussed on clarity, relevance, accessibility and questionnaire structure. There was a final round of testing to assess accessibility and usability.</p> Results <p>The 4Pi Questionnaire is a structured measure designed to capture experiences of involvement in diverse contexts across healthcare and research. The questionnaire consists of an introduction followed by 31 items grouped into two sections A and B. Section A (“Your experience of involvement”) includes 22 items relating to a single recent involvement activity and cover the five domains of the 4Pi National Involvement Standards framework. Respondents rate their agreement with 19 statements using a five-point Likert scale, and answer two open-ended questions. Section B (“About you”) collects demographic information. Completion time is approximately 15–30&#xa0;min. Involvement of subject-matter experts and PPI contributors ensured clarity of language, relevance of each question, and usability of the questionnaire.</p> Conclusions <p>Grounded in the 4Pi National Involvement Standards, the 4Pi Questionnaire provides an accessible and acceptable tool to measure the experiences and perceptions of patients and public contributors doing involvement activities. Systematically developed with and for people with lived experience, the 4Pi Questionnaire addresses a gap in the availability of standardised, meaningful measures and supports efforts to embed inclusive involvement practices across healthcare and research settings.</p>

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Development of a 4Pi national involvement standards-based questionnaire to evaluate patient and public involvement

  • Kathryn Watson,
  • Richard Morton,
  • Maria Milenova,
  • Hema Chaplin,
  • Erin Letbe-Holder,
  • Fiona Hackett,
  • Bernadette Khoshaba,
  • Kia-Chong Chua,
  • Manuela Russo

摘要

Background

Evaluation of patient and public involvement (PPI) is crucial to ensuring it is conducted with quality. However, determining how best to evaluate the experience of those doing involvement activities remains challenging, particularly given the complex landscape of diverse terminology and wide range of methods. There is a need for robust and accessible tools, grounded in established standards, that reflect the perspectives of patients and public contributors involved in PPI activities. To address this, we developed a questionnaire (4Pi Questionnaire) based on the 4Pi National Involvement Standards, a project that developed a framework around good practice and measurement, monitoring and evaluation of involvement activities.

Methods

The questionnaire was developed through an iterative process involving literature review, experts’ input and extensive consultation with PPI contributors. Initial items were generated deductively from the five domains of the 4Pi National Involvement Standards framework (i.e., Principle, Purpose, Presence, Process and Impact). Subsequent versions of the questionnaire were refined using a face validity workshop, a Questionnaire Appraisal System, and focus group-based cognitive interviewing (CI) with PPI contributors. Feedback focussed on clarity, relevance, accessibility and questionnaire structure. There was a final round of testing to assess accessibility and usability.

Results

The 4Pi Questionnaire is a structured measure designed to capture experiences of involvement in diverse contexts across healthcare and research. The questionnaire consists of an introduction followed by 31 items grouped into two sections A and B. Section A (“Your experience of involvement”) includes 22 items relating to a single recent involvement activity and cover the five domains of the 4Pi National Involvement Standards framework. Respondents rate their agreement with 19 statements using a five-point Likert scale, and answer two open-ended questions. Section B (“About you”) collects demographic information. Completion time is approximately 15–30 min. Involvement of subject-matter experts and PPI contributors ensured clarity of language, relevance of each question, and usability of the questionnaire.

Conclusions

Grounded in the 4Pi National Involvement Standards, the 4Pi Questionnaire provides an accessible and acceptable tool to measure the experiences and perceptions of patients and public contributors doing involvement activities. Systematically developed with and for people with lived experience, the 4Pi Questionnaire addresses a gap in the availability of standardised, meaningful measures and supports efforts to embed inclusive involvement practices across healthcare and research settings.