Note, 2024

Empowering patients as co-researchers in social pharmacy: Lessons learned and practical tips for meaningful partnership and impact

Research in Social and Administrative Pharmacy, ISSN 1551-7411, Volume 20, 3, Pages 372-376, 10.1016/j.sapharm.2023.12.006

Contributors

Cantarero-Arevalo L. 0000-0001-7734-2090 (Corresponding author) [1] Kaae S. 0000-0002-8187-365X [1] Jacobsen R. 0000-0002-8142-9807 [1] Nielsen A. Slyngborg L. Smistrup N. Kastrup L.M. Hameen-Anttila K. [2] Stromberg A. Stig Norgaard L. [1]

Affiliations

  1. [1] University of Copenhagen
  2. [NORA names: KU University of Copenhagen; University; Denmark; Europe, EU; Nordic; OECD];
  3. [2] University of Eastern Finland
  4. [NORA names: Finland; Europe, EU; Nordic; OECD]

Abstract

Engaging patients as co-researchers in health service research, involving them in the design, planning, and implementation rather than treating them as mere participants, can yield positive outcomes and generate value for patients' health. It also increases patients' health literacy and empowerment, leading to more meaningful studies and substantial research impact. However, deeper levels of engagement as partners throughout the research lifecycle come with ethical and methodological challenges. This commentary provides actionable advice for Patient Engagement and Involvement (PEI) in social pharmacy research through a rapid review of models, frameworks, and guidelines and by gathering lessons from four recent social pharmacy research initiatives conducted in Nordic settings. It also identifies and discusses ethical and methodological challenges to conducting authentic and sustained patient-driven research. Deeper levels of engagement where patients take the lead in shaping the social pharmacy research question(s) are rare due to the intensity of resources required. With these 24 tips and the lessons learned, we aim to make this approach more accessible to social pharmacy researchers interested in PEI.

Keywords

Citizen science, Co-creation, Co-design, Patient engagement, Patient involvement

Data Provider: Elsevier