Public involvement in health outcomes research: lessons learnt from the development of the recovering quality of life (ReQoL) measures

Abstract

Background To provide a model for Public involvement (PI) in instrument development and other research based on lessons learnt in the co-production of a recently developed mental health patient reported outcome measure called Recovering Quality of Life (ReQoL). While service users contributed to the project as research participants, this paper focuses on the role of expert service users as research partners, hence referred to as expert service users or PI. Methods At every stage of the development, service users influenced the design, content and face validity of the measure, collaborating with other researchers, clinicians and stakeholders who were central to this research. Expert service users were integral to the Scientific Group which was the main decision-making body, and also provided advice through the Expert Service User Group . Results During the theme and item generation phase (stage 1) expert service users affirmed the appropriateness of the seven domains of the Patient Reported Outcome Measure (activity, hope, belonging and relationships, self-perception, wellbeing, autonomy, and physical health). Expert service users added an extra 58 items to the pool of 180 items and commented on the results from the face and content validity testing (stage 2) of a refined pool of 88. In the item reduction and scale generation phase (stage 3), expert service users contributed to discussions concerning the ordering and clustering of the themes and items and finalised the measures. Expert service users were also involved in the implementation and dissemination of ReQoL (stage 4). Expert service users contributed to the interpretation of findings, provided inputs at every stage of the project and were key decision-makers. The challenges include additional work to make the technical materials accessible, extra time to the project timescales, including time to achieve consensus from different opinions, sometimes strongly held, and extra costs. Conclusion This study demonstrates a successful example of how PI can be embedded in research, namely in instrument development. The rewards of doing so cannot be emphasised enough but there are challenges, albeit surmountable ones. Researchers should anticipate and address those challenges during the planning stage of the project.

An emerging framework for fully incorporating public involvement (PI) into patient-reported outcome measures (PROMs)

“…Advice on what would be the most appropriate data collection method (i.e. interviews vs. focus groups), the timing of interviews, the location, and on who should conduct the interviews can all be incorporated [16,28]. The most appropriate data collection method may differ from one perspective to anotherwhilst focus groups can be more efficient and cost-effective than interviews, they are not suitable for every topic.…”

“…The most appropriate data collection method may differ from one perspective to anotherwhilst focus groups can be more efficient and cost-effective than interviews, they are not suitable for every topic. Peer (or lay) interviewing has been used in PROM development [16]. Furthermore, input on the content of topic guides, information sheets, consent forms, and all other patient-facing documents and guidance on any ethical implications of the study (including potential risks) are all key areas for PI.…”

“…PI allows for items, response options, and instructions for questionnaire completion to be considered. As with Stage 3, PI may include input on study design and methodology, recruitment, design and content of the public facing documents, and conducting the interviews themselves [16]. Further PI may involve analysing or interpreting the results of the interviews to select the items to include in the psychometric survey (Stage 7).…”

“…PI in this phase of PROM development can be useful for the interpretation of results. The different perspectives offered by PI partners may identify issues missed by researchers, and help to ensure the validity of the findings from the patient and/or public perspective [16].…”

“…The importance of involving the public in PROM development to increase the quality of the developed PROM has been highlighted by many authors [12,15,16]. PI and public engagement in PROM development and/or health outcomes research is encouraged by a range of institutions [17,18], however this practice is not widespread.…”