{"title":"Patient-led research and displacements of biomedical knowledge production, distribution, and consumption.","authors":"Dixi Louise Strand, Mari Holen","doi":"10.1177/13634593241249096","DOIUrl":null,"url":null,"abstract":"<p><p>Patient and Public Involvement in Research (PPIR) has become an increasingly prevalent and integral part of biomedical research. In this paper, we focus on patient-led research, taking as our case the construction of new biomedical knowledge regarding the rare disease ADNP syndrome. Specifically, we seek to understand how concepts of experiential knowledge and lay expertise become integral to rather than separate from scientific expertise. In the case of ADNP, the parent-led research \"mimes\" biomedical knowledge practices in a way that, on the one hand, enhances the legitimacy of science and scientific expertise, and on the other displaces and transforms science by the fact that other knowledge agents (patients, next-of-kin) enter these practices.</p>","PeriodicalId":12944,"journal":{"name":"Health","volume":" ","pages":"13634593241249096"},"PeriodicalIF":1.9000,"publicationDate":"2024-04-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Health","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1177/13634593241249096","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH","Score":null,"Total":0}
引用次数: 0
Abstract
Patient and Public Involvement in Research (PPIR) has become an increasingly prevalent and integral part of biomedical research. In this paper, we focus on patient-led research, taking as our case the construction of new biomedical knowledge regarding the rare disease ADNP syndrome. Specifically, we seek to understand how concepts of experiential knowledge and lay expertise become integral to rather than separate from scientific expertise. In the case of ADNP, the parent-led research "mimes" biomedical knowledge practices in a way that, on the one hand, enhances the legitimacy of science and scientific expertise, and on the other displaces and transforms science by the fact that other knowledge agents (patients, next-of-kin) enter these practices.
期刊介绍:
Health: is published four times per year and attempts in each number to offer a mix of articles that inform or that provoke debate. The readership of the journal is wide and drawn from different disciplines and from workers both inside and outside the health care professions. Widely abstracted, Health: ensures authors an extensive and informed readership for their work. It also seeks to offer authors as short a delay as possible between submission and publication. Most articles are reviewed within 4-6 weeks of submission and those accepted are published within a year of that decision.