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Public and patient engagement


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Workshop PPIE Steering commitee, 04.04.2019
LBG Open Innovation in Science Center

Published in: Science
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Public and patient engagement

  1. 1. Levels of “participation“ Arnstein, ladder of participation, 1969 White et al., Stufenmodell der Partizipation, 2010 EMPOWERMENT CONTROL information consultation participation collaboration partnerships decision-making self-organisation
  2. 2. How to involve? National Institute of Health Research PARTICIPATION INVOLVEMENT ENGAGEMENT Citizens and patients take part in research studies. e.g., being recruited in clinical trials, completing questionnaires, participating in focus groups. Information & knowledge about research is provided & disseminated. e.g., dissemination of research results to public (via media, social media), raising awareness of research through media, science festivals/open day at universities/research centres. Citizens and patients are actively involved in research. e.g., as grant holders or co-applicants, identifying research priorities, agenda setting, members of a project advisory or steering group, co-developing of patient information or materials, undertaking interviews with participants, carrying out research.
  3. 3. Involvement in the research process Tell Us! Crowdsourcing on Mental Health & Accidential injuries (OIS Center 2015, 2018) Collaborative writing Crowd research @MIT (Vaish, 2017) Dissemination Research agenda Study design Data collection Data analysis Peer evaluation designing & conducting interviews with/by youth (Powers & Tiffany, 2006) Stallcatchers gamified approach Alzheimer (Wired, 2017, SciStarter 2019) Advisory board public & patient representatives