Challenges, Opportunities & Outcomes of Patient-Oriented Research in Learning Health Systems

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About this Research Topic

Submission deadlines

  1. Manuscript Summary Submission Deadline 15 February 2025 | Manuscript Submission Deadline 30 April 2025

  2. This Research Topic is still accepting articles.

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Background

Patient-oriented research engages patients, families, communities and/or the public in the scientific process. Patient-oriented research has many synonyms including patient and public involvement, community science, citizen science, peer research, and patient-led research. Learning health systems (LHSs) mobilize data, incentives, science, and culture towards the collaborative goal of continuous improvement and innovation. LHS institutionalizes evidence-based decision-making by prioritizing research and quality improvement alongside integrated knowledge translation. The infrastructure required for LHS targets data, community, and methodology. Patient-oriented research touches each of these infrastructures. However, health systems vary in how they execute their mandates to engage and include patients, families, and communities in the process, planning, and delivery of health care. The question arises as to how well patient-oriented research participates within, and impacts upon, the advancement of LHSs.

National science policies in the United States, European Union, and Australia spotlight patient engagement in research. Various prominent, academic journals feature and prioritize patient-oriented research publications, including Science, Nature, and Bioscience. Globally, there are networks to effect this collaborative research including the Association for the Advancement of Participatory Sciences (US), Wellesely Centre; the HIV Networks in BC and Ontario; Zamplo Platform, Alberta; the Patient and Community Engagement Researchers (PaCERs), Alberta; The Self-Research Network (ZOON), Netherlands; Patient-Led Research Hub, Cambridge University, UK; the Patient-Led Research Collaborative (Long COVID); European Citizen Science Association. Many health systems have framed themselves as patient-first or patient-centered, with organizational policies that set vision statements that action the adage of “nothing about me, without me.”

To date, there has been substantial research across all categories of patient-oriented research. But, the impact, embeddedness, and value of patient-oriented research to advance the goals of LHS is less well-known and discussed. There is a need to clarify the process, methods, impact, challenges, and opportunities of mobilizing patient-oriented research to advance LHS. Examples of the nexus between LHS and patient-oriented research could be demonstrated through examples that have gone well, or where barriers have gotten in the way of impact. Where patient-oriented research has successfully (partially, completely) or not at all effected change in the health system, there is a need for: understanding the types of methods used; clarifying the role of patients and health systems in problem definition, study design, implementation and/or translation; understanding the theoretical frameworks undergirding the approaches; understanding relationships, processes and integrated knowledge translation techniques to support impactful citizen science; and ultimately recommendations and evidence on how to advance citizen science that directly impacts LHS.

This Research Topic will include manuscripts that aim to address some of the priority areas for the nexus of patient-oriented research and LHSs. This may include empirical work presenting quantitative, qualitative, or mixed methods research; commentary submissions; as well as scoping and systematic reviews. We welcome research from a broad range of settings and populations, including from low- and middle-income countries. Submissions led or co-authored by citizen-patients are especially welcome.

Examples of topic areas include, but are not limited to, the following:
• Empirically test models of engagement or integrated knowledge translation in patient and public involvement research
• Describe methods, roles, partnerships used to embed patient-oriented research in learning health systems
• Describe (protocol papers) and/or report (outcome papers) prospectively designed patient and public involvement in research that collaboratively define problems, conduct research, translate findings and/or implement change in health systems
• Systematically review learning health system or patient-oriented research literature on the impact of this type of engagement, and/or the most effective/impactful methods of patient-oriented research

Article types and fees

This Research Topic accepts the following article types, unless otherwise specified in the Research Topic description:

  • Brief Research Report
  • Case Report
  • Classification
  • Clinical Trial
  • Community Case Study
  • Data Report
  • Editorial
  • General Commentary
  • Hypothesis and Theory

Articles that are accepted for publication by our external editors following rigorous peer review incur a publishing fee charged to Authors, institutions, or funders.

Article types

This Research Topic accepts the following article types, unless otherwise specified in the Research Topic description:

  • Brief Research Report
  • Case Report
  • Classification
  • Clinical Trial
  • Community Case Study
  • Data Report
  • Editorial
  • General Commentary
  • Hypothesis and Theory
  • Methods
  • Mini Review
  • Opinion
  • Original Research
  • Perspective
  • Policy and Practice Reviews
  • Policy Brief
  • Review
  • Study Protocol
  • Systematic Review
  • Technology and Code

Keywords: Patient and Public Involvement, Patient Centered Health Systems, Patient researchers, Patient Engagement, Patient-Oriented Research, Peer research, Learning Health Systems, Health services policy and planning, Patient and community engagement

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