Current Practice of Public Involvement Activities in Biomedical Research and Innovation: A Systematic Qualitative Review

Abstract

BackgroundA recent report from the British Nuffield Council on Bioethics associated ‘emerging biotechnologies’ with a threefold challenge: 1) uncertainty about outcomes, 2) diverse public views on the values and implications attached to biotechnologies and 3) the possibility of creating radical changes regarding societal relations and practices. To address these challenges, leading international institutions stress the need for public involvement activities (PIAs). The objective of this study was to assess the state of PIA reports in the field of biomedical research.MethodsPIA reports were identified via a systematic literature search. Thematic text analysis was employed for data extraction.ResultsAfter filtering, 35 public consultation and 11 public participation studies were included in this review. Analysis and synthesis of all 46 PIA studies resulted in 6 distinguishable PIA objectives and 37 corresponding PIA methods. Reports of outcome translation and PIA evaluation were found in 9 and 10 studies respectively (20% and 22%). The paper presents qualitative details.DiscussionThe state of PIAs on biomedical research and innovation is characterized by a broad range of methods and awkward variation in the wording of objectives. Better comparability of PIAs might improve the translation of PIA findings into further policy development. PIA-specific reporting guidelines would help in this regard. The modest level of translation efforts is another pointer to the “deliberation to policy gap”. The results of this review could inform the design of new PIAs and future efforts to improve PIA comparability and outcome translation.

Patient and public involvement in the design of clinical trials: An overview of systematic reviews

“…Reviewers were not blinded to author, institution, or journal. The agreement was 100% before discussion and 6051 records were excluded leaving n = 39 potentially eligible articles for full‐text screening.…”

Do Public Involvement Activities in Biomedical Research and Innovation Recruit Representatively? A Systematic Qualitative Review

“…A previously published analysis on the same sample of PIA reports revealed that translation of PIA results into policy and practice is currently little documented [24]. A more precise reporting of representation objectives, achieved levels of representation and its limitations could contribute to more successful translation of PIA results, since representation ensures that the views, interests and preferences of the population at large are reflected [15].…”

“…material, see www.karger.com/doi/10.1159/000444478). For details on the search strategy see [24]. For the subsequent thematic text analysis of selected reports, an assessment matrix was developed based on a literature review of PIA-specific guidelines and frameworks [25,26,27,28].…”

“…These were coded to allow for qualitative and quantitative synthesis of the results. More details on the development of the analysis matrix and on data analysis have been published elsewhere [24]. …”

“A waste of time without patients”: The views of patient representatives attending a workshop in evidence‐based practice

“…Patient involvement and participation have been advocated for public health reasons, and found to improve quality of life and health outcomes . Many patients today participate on a system level, as activists involved in political processes, as board members in decisions about organization of health care or in prioritization of new treatments or technologies, in formal education of health professionals, and as researchers in biomedical research …”