Patient engagement in drug development
Dialogically Problematizing Participation
Bibliographic Data
| ID | 6451071 |
|---|---|
| Authors | Claudia Egher (0000-0003-3582-9217, Innovation Studies, Utrecht University, corresponding author), Tamás Bereczky (0000-0003-1314-556X, Independent researcher), Lisbeth Snede (Independent researcher), Olga Zvonareva (0000-0001-5548-7491, Health, Ethics, and Society, Maastricht University) |
| Year | 2024 |
| Volume | 34 |
| Issue | 1 |
| Pages | 31-51 |
| Publication date | 2024-10-28 |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Science as Culture (JOURNAL) |
| Journal identifiers | ISSN: 0950-5431 • E-ISSN: 1470-1189 |
| Publisher | Taylor & Francis (PUBLISHER • GB) |
| DOI | 10.1080/09505431.2024.2410719 |
| OpenAlex | W4403814518 |
| Language | NL |
| References cited | 39 |
For many years, the field of drug development remained insulated from patient engagement initiatives that became commonplace in healthcare, it is currently experiencing a participatory turn. This has been informed by a re-evaluation of the patients' insights and of the roles they can play in drug development, with both democratising and technocratic arguments invoked in support of their more substantial engagement. This article problematises the democratising potential of drug development through a knowledge co-production process between the authors of this paper - two scholars and two practitioners in this field. It scrutinises what patients can participate in drug development by zooming in on the Patient Expert Training provided by EUPATI, arguably the most influential and reputable patient education provider in Europe currently. Through their dialogue, the authors highlight the considerable epistemic requirements placed upon patients and warn about the risk of the emergence of participatory practices that rely exclusively on a narrow patient elite. They also reflect upon the benefits and challenges of close collaborations between researchers and practitioners and call for the systemic transformations needed for such knowledge co-production initiatives to become commonplace in academia
Political science · Sociology · Health Policy Implementation Science · Mental Health and Patient Involvement · Primary Care and Health Outcomes · Psychology
Inclusion
Phenomenology of Illness
Coping with Threatened Identities
Standardising Patient Engagement in Drug Development
Remaking Participation
The pasteurization of France
Epistemic Injustice and Illness
Knowledge Co-Production in Scientific and Activist Alliances
Evaluation of patient engagement in medicine development
Evaluating the “return on patient engagement initiatives” in medicines research and development
“It took a piece of me”
Patient engagement in drug development
Undone Science and Counter-Expertise
Progress, Innovation and Regulatory Science in Drug Development
Machineries for Making Publics
Institutional sources of legitimacy in multistakeholder global governance at Icann
Research "in the wild" and the shaping of new social identities
Misunderstood misunderstanding
Left of Ethnomethodology
Strongly Participatory Science and Knowledge Justice in an Environmentally Contested Region
Knowing Patients
Illness Is Work
The Pharmacology of Distributed Experiment - User-generated Drug Innovation
The Body Multiple
The challenge of institutionalised complicity
| Highly cited | No |
|---|