Abstract
BackgroundGuidelines suggest the patient community should be consulted from the outset when designing and implementing basic biomedical research, but such patient communities may include conflicting views. We examined how engagement occurred in one such instance.ObjectiveOur objective was to scrutinize patient and public involvement (PPI) by a pan‐European biomedical consortium working to develop drugs to treat autism. We aimed to use this as an example to illustrate how PPI has been utilized in biomedical research.Setting, participants and analysisTwo public events, one in the UK and one in Denmark were conducted as part of the consortium's on‐going PPI activities in 2014 and 2015. Sixty‐six individuals submitted written comments on the consortium's research after these events. The textual data produced were analysed using a thematic approach. Approximately 71% of respondents reported themselves to be adults on the autism spectrum or parents of children with autism.ResultsThe themes identified illustrated major differences between some community concerns and the biomedical research agenda. While treating autism per se. was seen as problematic by some, treating specific co‐occurring problems was seen as helpful in some circumstances. The biomedical consortium selected PPI with a limited user viewpoint at its outset and more widely once basic research was on‐going.DiscussionThis case illustrates what we term “selective PPI” where only a sympathetic and/or limited patient viewpoint is included. Findings highlight the perils of using selective PPI to legitimise scientific endeavours, and the possibilities for constructive dialogue.
Highlights
While there is much research on engagement with patient communities in health services and clinical research, less attention has been paid to the role of patients in shaping biomedical research agendas.[1]
patient and public involvement (PPI) was woven into consortium activities from the start, with a parent-run charity that is a known supporter of treatment of autism (Autism Speaks) as a co-applicant on the grant
The findings show the autism community is an example of a patient community which holds diverse opinions about the promises and perils of biomedical research
Summary
While there is much research on engagement with patient communities in health services and clinical research, less attention has been paid to the role of patients in shaping biomedical research agendas.[1]. Objective: Our objective was to scrutinize patient and public involvement (PPI) by a pan-European biomedical consortium working to develop drugs to treat autism. Both events were advertised widely via Universities and EAB networks, and via networks in the autism community During these two events, a promotional video was used as a prompt to solicit comments about the consortium project agenda. The video consists of interviews with prominent scientists working on individual biomedical studies that make up the consortium These are upstream research projects focussed on discovering biological predispositions to autism and turning this knowledge into treatments. Our aim was to assess diversity of community views to illustrate how PPI was used in the biomedical context We analysed these data and report the extent to which community feedback was taken into account by the consortium
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